Sorry it has been a while - I wanted to update with some new information. I have discovered the names of a couple of pieces of equipment I had heard of in passing, but could not investigate due to knowing nothing about it and therefore having no search terms. Most of my information is serendipitous in this way.
Farrell Bag
This is used to prevent reflux when a person is being tube fed. Reflux is when acid, stomach gas and contents flow back up into the throat, often causing pain and a risk of aspiration (food entering the lungs), which in turn can be a pneumonia risk. Think of it a bit like a full carton of juice, with the straw stuck in the top. Reflux is like what happens when you squeeze the carton and juice comes up the straw. Farrell bags help reduce this, by providing an place other than the throat for the contents to flow into, i.e. like providing a more desirable straw for the juice to flow into.
The bag is connected to a tube, which has several valves which clip onto the person's feeding tube extension. During a feeding, air and stomach contents that would have refluxed end up going into this bag. The air is released through a valve in the top of the bag, and when the http://www.blogger.com/img/blank.gifstomach is empty enough, the refluxed food flows slowly back into the stomach, there to be digested. Because it is a closed system it is hygeinic, and one bag can be used, unrefridgerated, for twenty four hours. They can be used with G-tubes (tubes going straight into the stomach), or GJ tubes (tubes with one part in the stomach and one part in the small intestine. They can be used with IV-pole style tube feeding, or pump-in-a-backpack style feeding.
If your loved one with leukodystrophy is having trouble with reflux or vomiting, it might be worth asking your consultant about using farrell bags to help with this. If these are cleared with your doctor you will probably be provided with them, and tuition in using them. If you need a reminder, having gone down this route, there is a very good youtube video at: http://www.youtube.com/watch?v=2yi9K0ENrIM
Hensinger Head Support
I have been trying to find out more about this head support for some time now, and only recently stumbled on the name of it. It provides full head support when sitting up, using points on the chin and jaw to prop the head up. Unlike travel neck pillows, it is fastened at the front, making it much harder for it to slip or for the head to flop forwards when it is being worn. It is also thicker than most travel horse-shoe pillows, meaning that better support is provided if the person has a longer neck. They don't seem to be available in the UK without being imported from the US, but I will include a US link:
http://www.especialneeds.com/helmets-headsupports-hensinger-head-support.html
E-Z-on harness
This is an essential piece of equipment if your loved one with leukodystrophy is child-sized and travels lying down across the back seat of a car. It is a harness specially adapted to this purpose.http://www.blogger.com/img/blank.gif
This is a link to a UK page which describes the harness more fully and shows a cartoon drawing of the harness in use:
http://www.livingmadeeasy.org.uk/children/belts-%26-harnesses-for-vehicles-p/e_z_on-harness-0032864-2824-information.htm
For illustrative purposes here is a link to a photo of one of the E-Z-on harness types on the E-Z-on website:
http://www.ezonpro.com/products/schoolBus/adjustableVest/103z.shtml
If your doctor or physiotherapist thinks your loved one with leukodystrophy may breath better (less stomach compression and improved drainage of saliva and mucus out the mouth onto a towel or muslin square), have better posture (less pressure on the back so possibly less likelihood of aggravating scoliosis) or have better bladder and bowel function (less compression which might possibly make emptying easier), they might recommend your loved one with leukodystrophy is kept horizontal. If so, you may choose to use a harness and have them lie on a mattress across the back seat of the car.
If your loved one with leukodystrophy needs to be kept horizontal, the physiotherapist might well decide a wheelchair with tilt and recline function might be required too, possibly with a reversible seat so that you can keep your eye on their facial expressions and movements, and hear any sounds they make to communicate better. If your wheelchair services can't provide or recommend such a chair then it may be worth doing some research yourself, and then pushing for the funding (and/or assistance) to obtain one. To name drop, some suitable strollers for children that might - and I only say might as I am not a physiotherapist or specialist - be suitable: JazzeasyS, Tom Cross Country Stroller, Ormesa New Bug.
Here is a UK link where you can see photos, read about features and gain an estimated cost of each of these strollers: http://www.livingmadeeasy.org.uk/featurescompare.php?groupid=2776
Tuesday, 28 June 2011
Wednesday, 1 September 2010
September - Leukodystrophy Awareness Month
The colour for raising leukodystrophy awareness is apparently navy blue so if we could all wear something of that colour that might encourage people to ask questions, thereby giving us a way to broach the subject. Find out if any places in the area e.g. schools, hospitals etc. will let you speak publicly about the leukodystrophies or put out information. Of course, these are just two ideas!
Wednesday, 28 July 2010
More Useful Charity Links
Angel Flights:
This is a small American charity that, in some parts of the USA (mostly the heartland), gives free private flights for seriously ill patients, usually children. This would be in a situation where, for instance, the patient needs to travel long distances for medical treatment, and it would be too slow/uncomfortable for them to travel on land, and public air flight is not practical/possible/feasible. It is run entirely by volunteers.
http://www.angelflight.com/
Songs of love:
This is run by a group of professional singer/song writers. They write special, personalised, loving songs for children of up to 21 years old facing life limiting or life threatening physical, emotional or medical problems. This is to help the child recover/cope or just to give an emotional lift and some encouragement. The style, vocals, tune and lyrics are all personal to the child in question.
http://www.songsoflove.org/
Caringbridge:
This is a website where people facing serious/complex medical challenges can easily keep select friends and family up to date about their condition. You can create your own web page for free, giving it its own design, and name. You can upload about 60 photos, and you have a guest book that visitors to the page can sign. There is a space for you to write about your life/hobbies/personality/ etc. and the process leading up to diagnosis, along with medical history. There is also a space where you can post links/resources, and another space where you can post medical/life updates/thoughts in the form of a blog.
http://www.caringbridge.org/
Torbay Holiday Helpers Network:
This is a British network of hotels and resorts that offer free holiday stays to families with children who are seriously/terminally ill or who have been recently bereaved.
http://www.thhn.co.uk/
Starlight:
You may have heard of Make-A-Wish in America. This is the British version. The charity grants wishes to seriously or terminally ill children. Such wishes might include objects of desire (e.g. swing set), holiday, extra special activity (e.g. swimming with dolphins), meeting a revered celebrity, or fulfilling an ambition (e.g. to join the fire fighters).
http://www.starlight.org.uk/
Ronald McDonald House:
This is free accommodation near hospitals throughout the UK, for families with children facing hospital treatment. It aims to create a home from home environment, and as such part of this involves parents of children staying there sharing small ‘normal’ household tasks.
http://www.rmhc.org.uk/
Songdrops:
An archive (frequently updated) of cheerful, innocent, fun, loving and uplifting songs that can be loved by adults and children alike.
www.songdrops.com
This is a small American charity that, in some parts of the USA (mostly the heartland), gives free private flights for seriously ill patients, usually children. This would be in a situation where, for instance, the patient needs to travel long distances for medical treatment, and it would be too slow/uncomfortable for them to travel on land, and public air flight is not practical/possible/feasible. It is run entirely by volunteers.
http://www.angelflight.com/
Songs of love:
This is run by a group of professional singer/song writers. They write special, personalised, loving songs for children of up to 21 years old facing life limiting or life threatening physical, emotional or medical problems. This is to help the child recover/cope or just to give an emotional lift and some encouragement. The style, vocals, tune and lyrics are all personal to the child in question.
http://www.songsoflove.org/
Caringbridge:
This is a website where people facing serious/complex medical challenges can easily keep select friends and family up to date about their condition. You can create your own web page for free, giving it its own design, and name. You can upload about 60 photos, and you have a guest book that visitors to the page can sign. There is a space for you to write about your life/hobbies/personality/ etc. and the process leading up to diagnosis, along with medical history. There is also a space where you can post links/resources, and another space where you can post medical/life updates/thoughts in the form of a blog.
http://www.caringbridge.org/
Torbay Holiday Helpers Network:
This is a British network of hotels and resorts that offer free holiday stays to families with children who are seriously/terminally ill or who have been recently bereaved.
http://www.thhn.co.uk/
Starlight:
You may have heard of Make-A-Wish in America. This is the British version. The charity grants wishes to seriously or terminally ill children. Such wishes might include objects of desire (e.g. swing set), holiday, extra special activity (e.g. swimming with dolphins), meeting a revered celebrity, or fulfilling an ambition (e.g. to join the fire fighters).
http://www.starlight.org.uk/
Ronald McDonald House:
This is free accommodation near hospitals throughout the UK, for families with children facing hospital treatment. It aims to create a home from home environment, and as such part of this involves parents of children staying there sharing small ‘normal’ household tasks.
http://www.rmhc.org.uk/
Songdrops:
An archive (frequently updated) of cheerful, innocent, fun, loving and uplifting songs that can be loved by adults and children alike.
www.songdrops.com
Tuesday, 13 July 2010
Another Link - Samuel's Formula
This is a link about tube feeding formula. It is about a family with a kid called Sam, who was fed through a G-tube due to heart problems. His parents were very uneasy about feeding Sam commercial formula as it is basically just water, corn syrup and fortified milk powder. Therefore they came up with their own formula which tastes good, runs smoothly through tube feeding equipment, and is nutirionally complete and optimal. They have a website:
http://www.samuelsformula.com
On the website is a detailed, and I mean detailed(!), video narrated by Sam's father about how, and why, they came up with this formula, as well as how to make your own variations of this. He also talks about why each ingredient is used and Samuel's own story, and, most importantly, he teaches you how to experiment safely until you find the nutritious and tasty formula that works for your loved one with leukodystrophy.
If green goo or power juice (both described earlier in this blog) do not work well for your loved one with leukodystrophy, or you want something to supplement them, then, as always, talk to a nutritionist or other specialist (as I'm not one!) and mabye this formula or a variation will be suitable.
***
BASIC OVERVIEW OF HOW TO MAKE SAMUEL'S FORMULA
Full List of Ingredients
Organic pork chops
Organic pork liver
Organic banana
Organic eggs
Organic rewer’s yeast
NOW full spectrum minerals
Organic coconut oil
Organic wheat germ oil
Organic flax seed oil
Organic strawberries
Organic honey
Organic cod liver oil
Grape seed antioxidant
Optibac probiotic
Organic cranberries
Organic bio yoghurt natural flavour
Fybogel
Organic butter
Organic vinegar
Spring or tap water
Acerola berry juice
BEFOREHAND
1. Cook Broth
Ingredients:
Pork chops (low in thiols - sulphur containing chemicals that may aggravate some forms of leukodystrophy)
2 pints (4 cups) natural mineral water
2 tablespoons organic vinegar
Cut off the wings and remove the neck, fat glands and the gizzards from the cavity. Cut chicken parts into several pieces, especially neck and chicken wings. Place chicken or chicken pieces in a large stainless steel pot with water, let stand 30 minutes to 1 hour. Bring to a boil, and remove scum that rises to the top. Reduce heat, cover and simmer for up to 36 hours. Remove carcass. Let cool and remove chicken meat from the carcass, saving for other purposes. Strain the stock into a large bowl and reserve in your refrigerator until the fat rises to the top and congeals. Skim off this fat and reserve the stock.
2. Cook Liver
Ingredients:
4 oz pork liver (again low in thiols)
Organic butter
Saute quickly in butter.
3. Combine Liver and Broth
Blend cooked liver with 1 pint broth and combine with the rest of the broth. Freeze into separate half pint portions until ready to use in formula.
4. Soft Boil 3 organic Eggs
5. Extract the yolks and discard whites
6. Blend the yolks with 1 banana
7. Freeze in a small container until ready to use in formula
8. Repeat until 12 portions of egg-yolk/banana are made
Making the Formula Each Day
9. Get a frozen portion of liver/broth mix and mix in a frozen portion of egg/banana mix
10. Stir in 1 tablespoon nutritional yeast, 1 tablespoon coconut oil, 1 tablespoon flax seed oil, 1 teaspoon cod liver oil, 2 teaspoons wheat germ oil, 1 teaspoon acerola juice, half a crushed NOW full spectrum mineral tablet, one grape seed antioxidant tablet, some optibac and one sachet of fybogel
11. Blend
12. Stir in bio yoghurt – 1/2 a pint
13. Cut strawberries in half and add with cranberries and 2 tablespoons of honey. Blend
http://www.samuelsformula.com
On the website is a detailed, and I mean detailed(!), video narrated by Sam's father about how, and why, they came up with this formula, as well as how to make your own variations of this. He also talks about why each ingredient is used and Samuel's own story, and, most importantly, he teaches you how to experiment safely until you find the nutritious and tasty formula that works for your loved one with leukodystrophy.
If green goo or power juice (both described earlier in this blog) do not work well for your loved one with leukodystrophy, or you want something to supplement them, then, as always, talk to a nutritionist or other specialist (as I'm not one!) and mabye this formula or a variation will be suitable.
***
BASIC OVERVIEW OF HOW TO MAKE SAMUEL'S FORMULA
Full List of Ingredients
Organic pork chops
Organic pork liver
Organic banana
Organic eggs
Organic rewer’s yeast
NOW full spectrum minerals
Organic coconut oil
Organic wheat germ oil
Organic flax seed oil
Organic strawberries
Organic honey
Organic cod liver oil
Grape seed antioxidant
Optibac probiotic
Organic cranberries
Organic bio yoghurt natural flavour
Fybogel
Organic butter
Organic vinegar
Spring or tap water
Acerola berry juice
BEFOREHAND
1. Cook Broth
Ingredients:
Pork chops (low in thiols - sulphur containing chemicals that may aggravate some forms of leukodystrophy)
2 pints (4 cups) natural mineral water
2 tablespoons organic vinegar
Cut off the wings and remove the neck, fat glands and the gizzards from the cavity. Cut chicken parts into several pieces, especially neck and chicken wings. Place chicken or chicken pieces in a large stainless steel pot with water, let stand 30 minutes to 1 hour. Bring to a boil, and remove scum that rises to the top. Reduce heat, cover and simmer for up to 36 hours. Remove carcass. Let cool and remove chicken meat from the carcass, saving for other purposes. Strain the stock into a large bowl and reserve in your refrigerator until the fat rises to the top and congeals. Skim off this fat and reserve the stock.
2. Cook Liver
Ingredients:
4 oz pork liver (again low in thiols)
Organic butter
Saute quickly in butter.
3. Combine Liver and Broth
Blend cooked liver with 1 pint broth and combine with the rest of the broth. Freeze into separate half pint portions until ready to use in formula.
4. Soft Boil 3 organic Eggs
5. Extract the yolks and discard whites
6. Blend the yolks with 1 banana
7. Freeze in a small container until ready to use in formula
8. Repeat until 12 portions of egg-yolk/banana are made
Making the Formula Each Day
9. Get a frozen portion of liver/broth mix and mix in a frozen portion of egg/banana mix
10. Stir in 1 tablespoon nutritional yeast, 1 tablespoon coconut oil, 1 tablespoon flax seed oil, 1 teaspoon cod liver oil, 2 teaspoons wheat germ oil, 1 teaspoon acerola juice, half a crushed NOW full spectrum mineral tablet, one grape seed antioxidant tablet, some optibac and one sachet of fybogel
11. Blend
12. Stir in bio yoghurt – 1/2 a pint
13. Cut strawberries in half and add with cranberries and 2 tablespoons of honey. Blend
Sunday, 4 July 2010
Beckman Oral Motor Therapy
I owe so much to Brad Fisher, father to five year old Shira Fisher (SMA type 1, which also causes progressive movement loss) in terms of information for this site. He and his wife Maxine are parents that had to advocate and lobby and bully the stubborn health officials to get what Shira needed, and have largely created their own (very effective) care plan for Shira. Brad has posted so many videos about how he cares for Shira, and they have also put together Shira's website with many care links:
www.asonginthisworld.com
He has posted videoes on Youtube of Shira's Beckman Oral Motor Therapy routine. Since it is difficult to describe I am going to link you first to the Youtube videos of the therapy Brad and Shira do, and then (hopefully) to the page on his site where you can read the brochure describing the exercises.
As I mentioned before, Beckman Oral Motor Therapy keeps the jaw and lips loose and supple, which is important for keeping as much movement as possible. Movement is important as it might help communication to some extent, teeth brushing, suctioning, smiling and many other functions.
Here is the link to the first Youtube video (you should be able to access the others through the suggested thumbnail videos to the right of the main one):
http://www.youtube.com/watch?v=KKxbexuV804&feature=related
The second link is the link to the diagrams for the Beckman Oral Motor Therapy that are posted in PDF format on Shira's website.
http://www.asonginthisworld.com/images/client_pics/Beckman%20Motor%20Oral%20Therapy.PDF
I know the diagrams may be hard to follow as they aren't that clear, but printing it out should make it clearer. It is also worth looking at the care page the Fishers have compiled as there is a wealth of links and information provided about so many important areas and there are bound to be important points that I have not heard of or forgotten to mention in the blog.
http://www.asonginthisworld.com/caring_for_sma.php
And last, as always, a speech therapist, physiotherapist or GP is (or should be) able to provide more crucial information and recommendations, and it is always best to consult a specialist before adopting these kinds of regimes.
www.asonginthisworld.com
He has posted videoes on Youtube of Shira's Beckman Oral Motor Therapy routine. Since it is difficult to describe I am going to link you first to the Youtube videos of the therapy Brad and Shira do, and then (hopefully) to the page on his site where you can read the brochure describing the exercises.
As I mentioned before, Beckman Oral Motor Therapy keeps the jaw and lips loose and supple, which is important for keeping as much movement as possible. Movement is important as it might help communication to some extent, teeth brushing, suctioning, smiling and many other functions.
Here is the link to the first Youtube video (you should be able to access the others through the suggested thumbnail videos to the right of the main one):
http://www.youtube.com/watch?v=KKxbexuV804&feature=related
The second link is the link to the diagrams for the Beckman Oral Motor Therapy that are posted in PDF format on Shira's website.
http://www.asonginthisworld.com/images/client_pics/Beckman%20Motor%20Oral%20Therapy.PDF
I know the diagrams may be hard to follow as they aren't that clear, but printing it out should make it clearer. It is also worth looking at the care page the Fishers have compiled as there is a wealth of links and information provided about so many important areas and there are bound to be important points that I have not heard of or forgotten to mention in the blog.
http://www.asonginthisworld.com/caring_for_sma.php
And last, as always, a speech therapist, physiotherapist or GP is (or should be) able to provide more crucial information and recommendations, and it is always best to consult a specialist before adopting these kinds of regimes.
Wednesday, 31 March 2010
Superior Disinfectants and Books about Leukodystrophy
These are some links to disinfectants that are used in the lab that may be of use to people with leukodystrophy, particularly in the winter time. Many people with leukodystrophy have to avoid infections (rife in winter, as we all know!), as the outcome could be catastrophic.
The below is a website that makes a range of products called 'Biocleanse' - which is proven effective against MRSA amongst other things. Their range includes wipes, disinfectant specifically for cleaning things like cough assists, bipap machines and suction machines - but on the website under 'application guide' it tells you what each product is best used for. I think you may have to contact them to get prices and information on ordering. The website is UK based.
http://www.dentisan.co.uk/index.html
The next link is to a disinfectant against viruses. It is marketed towards laboratories and livestock, but is effective against 18 viruses known to man and animals and might help some people with leukodystrophy to stay infection free in the winter.
http://www.rmsupply.co.uk/Virkon_lab_products.htm
The next link is the link to some books that are sold on Amazon about myelin. As can be seen many of them are pretty expensive, but at the least the link will give you names of books you can possibly find in a hospital library. The may also be good birthday or Christmas presents, or the money could be raised by fundraising.
http://www.amazon.co.uk/s/ref=nb_sb_noss?url=search-alias%3Dstripbooks&field-keywords=myelin&x=13&y=18
There don't seem to be many reader-friendly books on leukodystrophy, which is not surprising, even if it is disappointing. However, the closest scientific ones that may help are linked here. They are mainly internet guides to sourcing more information:
Leukodystrophy - A Medical Dictionary, Bibliography, and Annotated Research Guide to Internet References
http://www.amazon.co.uk/Leukodystrophy-Dictionary-Bibliography-Annotated-References/dp/0497006545/ref=sr_1_1?ie=UTF8&s=books&qid=1270037258&sr=1-1
The Official Parent's Sourcebook on Leukodystrophy: A Revised and Updated Directory for the Internet Age
http://www.amazon.co.uk/Official-Parents-Sourcebook-Leukodystrophy-Directory/dp/0497009943/ref=sr_1_2?ie=UTF8&s=books&qid=1270037258&sr=1-2
This one is specifically for Metachromatic leukodystrophy:
The Official Parent's Sourcebook on Metachromatic Leukodystrophy: A Revised and Updated Directory for the Internet Age (Paperback)
http://www.amazon.co.uk/Official-Parents-Sourcebook-Leukodystrophy-Directory/dp/0497009943/ref=sr_1_2?ie=UTF8&s=books&qid=1270037258&sr=1-2
This next book is not about leukodystrophy but if you ever have to advocate to get your loved one with leukodystrophy the equipment, care and (legal) support they need whether in hospital or out of it, this is apparently an invaluable book:
How Doctors Think
http://www.amazon.co.uk/How-Doctors-Think-Jerome-Groopman/dp/0547053649/ref=sr_1_1?ie=UTF8&s=books&qid=1270038126&sr=8-1
Finally, some moving, honest and unsentimental accounts from parents of caring for children with leukodystrophy:
"Without a Word" - Jill Kelly, founder of Hunter's Hope. A memoire of her time with her son Hunter, who had Krabbes leukodystrophy
http://www.jillk.org/author/without-a-word/
"Eyes That See" - Christina Levasheff - parent of Judson Levasheff who had Krabbes leukodystrophy
http://www.storyofjudson.com/eyesthatsee
I also hear that Augusto Odone plans to write a book to commemorate his son, Lorenzo, who died from aspiration pneumonia as an indirect effect of adrenoleukodystrophy. Augusto founded the Myelin project and he and his late wife Michaela concocted "Lorenzo's Oil" - a blend of 4 parts Triglyceride monounsaturated oleic acid and 1 part Triglyceride monounsaturated erucic acid that prevents the body making the very long fats that build up in ALD. Links to the myelin project are in my blog entry "Useful Organisations".
The below is a website that makes a range of products called 'Biocleanse' - which is proven effective against MRSA amongst other things. Their range includes wipes, disinfectant specifically for cleaning things like cough assists, bipap machines and suction machines - but on the website under 'application guide' it tells you what each product is best used for. I think you may have to contact them to get prices and information on ordering. The website is UK based.
http://www.dentisan.co.uk/index.html
The next link is to a disinfectant against viruses. It is marketed towards laboratories and livestock, but is effective against 18 viruses known to man and animals and might help some people with leukodystrophy to stay infection free in the winter.
http://www.rmsupply.co.uk/Virkon_lab_products.htm
The next link is the link to some books that are sold on Amazon about myelin. As can be seen many of them are pretty expensive, but at the least the link will give you names of books you can possibly find in a hospital library. The may also be good birthday or Christmas presents, or the money could be raised by fundraising.
http://www.amazon.co.uk/s/ref=nb_sb_noss?url=search-alias%3Dstripbooks&field-keywords=myelin&x=13&y=18
There don't seem to be many reader-friendly books on leukodystrophy, which is not surprising, even if it is disappointing. However, the closest scientific ones that may help are linked here. They are mainly internet guides to sourcing more information:
Leukodystrophy - A Medical Dictionary, Bibliography, and Annotated Research Guide to Internet References
http://www.amazon.co.uk/Leukodystrophy-Dictionary-Bibliography-Annotated-References/dp/0497006545/ref=sr_1_1?ie=UTF8&s=books&qid=1270037258&sr=1-1
The Official Parent's Sourcebook on Leukodystrophy: A Revised and Updated Directory for the Internet Age
http://www.amazon.co.uk/Official-Parents-Sourcebook-Leukodystrophy-Directory/dp/0497009943/ref=sr_1_2?ie=UTF8&s=books&qid=1270037258&sr=1-2
This one is specifically for Metachromatic leukodystrophy:
The Official Parent's Sourcebook on Metachromatic Leukodystrophy: A Revised and Updated Directory for the Internet Age (Paperback)
http://www.amazon.co.uk/Official-Parents-Sourcebook-Leukodystrophy-Directory/dp/0497009943/ref=sr_1_2?ie=UTF8&s=books&qid=1270037258&sr=1-2
This next book is not about leukodystrophy but if you ever have to advocate to get your loved one with leukodystrophy the equipment, care and (legal) support they need whether in hospital or out of it, this is apparently an invaluable book:
How Doctors Think
http://www.amazon.co.uk/How-Doctors-Think-Jerome-Groopman/dp/0547053649/ref=sr_1_1?ie=UTF8&s=books&qid=1270038126&sr=8-1
Finally, some moving, honest and unsentimental accounts from parents of caring for children with leukodystrophy:
"Without a Word" - Jill Kelly, founder of Hunter's Hope. A memoire of her time with her son Hunter, who had Krabbes leukodystrophy
http://www.jillk.org/author/without-a-word/
"Eyes That See" - Christina Levasheff - parent of Judson Levasheff who had Krabbes leukodystrophy
http://www.storyofjudson.com/eyesthatsee
I also hear that Augusto Odone plans to write a book to commemorate his son, Lorenzo, who died from aspiration pneumonia as an indirect effect of adrenoleukodystrophy. Augusto founded the Myelin project and he and his late wife Michaela concocted "Lorenzo's Oil" - a blend of 4 parts Triglyceride monounsaturated oleic acid and 1 part Triglyceride monounsaturated erucic acid that prevents the body making the very long fats that build up in ALD. Links to the myelin project are in my blog entry "Useful Organisations".
Thursday, 18 March 2010
More Links to Equipment, and Some to Experimental Treatments
http://www.child-disability.co.uk/Index.html
For anyone in the UK, the link above goes to a fantastic website aimed at giving a range of suggestions on how to make life easier and richer for a child with a disability. From things like fun at home to days out and holidays, as well as a brilliant page about equipment types. It gives the names, photos and sometimes links as well to different pieces of equipment. The tiltrite chair, portable hoists and moulded mattresses designed to help with a twisted posture particularly spring to mind.
Here are some links to more experimental treatments I have read about. Some of these may be dated but appeared to produce small improvements in the child. These reports were purely anecdotal, and so I can't validate or invalidate them. I am also not a doctor, and doctors would be more up to date about where this research has led, or at least point you in the right direction to somebody who would know.
Clorazepate - This drug belongs to a group of drugs called the benzodiazepines, and has been used experimentally in the treatment of metachromatic leukodystrophy. Its brand names are tranxene and novo-clopate, and it is also known as clorazepate dipotassium. It is a skeletal muscle relaxant, meaning it can make a person relaxed and supple. It is also an anxiolytic (reduces anxiety), anticonvulsant (reduces seizures) and sedative. It can't be used in people with impaired kidney or liver function. You may need to wait a few months to see the effects if you do end up using this drug. Tolerance and dependence do occur with frequent use, and withdrawal symptoms can occur if use is decreased suddenly. However, clorazepate has breakdown products that are still active in the body, and tolerance to these is slower. If the person takes any other sedatives these are likely to enhance the sedative effects of clorazepate. If the person having clorazepate is a child or takes any other medicines, special precautions should be taken.
Gamma globulin - This a blood protein, given in the form of injections normally to people who have been exposed to measles or hepatitis A, but has been used as an experimental treatment for metachromatic leukodystrophy. It can also be given through an IV drip. The injections or infusions temporarily boost immunity to disease which is very important in people with leukodystrophy, since small infections can quickly become life-threatening. Gamma globulin injections are also used to treat immune disorders including an auto-immune disease where the body's immune system attacks its own blood cells. It has been postulated that demyelination (which is what happens leading to loss of movement in leukodystrophy) may occur because abnormal accumulation of chemicals in the nerve insulation causes the person's immune system to attack and destroy it. Some leukodystrophies also appear to be due to the loss of the cells themselves that insulate nerves. Since gamma globulin also causes the spleen to ignore antibody tagged blood cells, it may be possible to prevent auto-immune attack of the cells that insulate nerves using gamma globulin injections, if they have been tagged by the immune system in the same way.
Hydrocortisone - This might be useful in some cases as a short term way of reducing inflammation in the brain. This may relieve to some degree, problems such as convulsions, fevers and nerve pain.
For anyone in the UK, the link above goes to a fantastic website aimed at giving a range of suggestions on how to make life easier and richer for a child with a disability. From things like fun at home to days out and holidays, as well as a brilliant page about equipment types. It gives the names, photos and sometimes links as well to different pieces of equipment. The tiltrite chair, portable hoists and moulded mattresses designed to help with a twisted posture particularly spring to mind.
Here are some links to more experimental treatments I have read about. Some of these may be dated but appeared to produce small improvements in the child. These reports were purely anecdotal, and so I can't validate or invalidate them. I am also not a doctor, and doctors would be more up to date about where this research has led, or at least point you in the right direction to somebody who would know.
Clorazepate - This drug belongs to a group of drugs called the benzodiazepines, and has been used experimentally in the treatment of metachromatic leukodystrophy. Its brand names are tranxene and novo-clopate, and it is also known as clorazepate dipotassium. It is a skeletal muscle relaxant, meaning it can make a person relaxed and supple. It is also an anxiolytic (reduces anxiety), anticonvulsant (reduces seizures) and sedative. It can't be used in people with impaired kidney or liver function. You may need to wait a few months to see the effects if you do end up using this drug. Tolerance and dependence do occur with frequent use, and withdrawal symptoms can occur if use is decreased suddenly. However, clorazepate has breakdown products that are still active in the body, and tolerance to these is slower. If the person takes any other sedatives these are likely to enhance the sedative effects of clorazepate. If the person having clorazepate is a child or takes any other medicines, special precautions should be taken.
Gamma globulin - This a blood protein, given in the form of injections normally to people who have been exposed to measles or hepatitis A, but has been used as an experimental treatment for metachromatic leukodystrophy. It can also be given through an IV drip. The injections or infusions temporarily boost immunity to disease which is very important in people with leukodystrophy, since small infections can quickly become life-threatening. Gamma globulin injections are also used to treat immune disorders including an auto-immune disease where the body's immune system attacks its own blood cells. It has been postulated that demyelination (which is what happens leading to loss of movement in leukodystrophy) may occur because abnormal accumulation of chemicals in the nerve insulation causes the person's immune system to attack and destroy it. Some leukodystrophies also appear to be due to the loss of the cells themselves that insulate nerves. Since gamma globulin also causes the spleen to ignore antibody tagged blood cells, it may be possible to prevent auto-immune attack of the cells that insulate nerves using gamma globulin injections, if they have been tagged by the immune system in the same way.
Hydrocortisone - This might be useful in some cases as a short term way of reducing inflammation in the brain. This may relieve to some degree, problems such as convulsions, fevers and nerve pain.
Thursday, 11 March 2010
Some More Links
Waterless ltd. is an online store where you can buy hair and body personal hygeine products that do not require water. For example, soap that you just rub on and it cleans and then evaporates. Hand sanitiser gel that you just rub on and it disinfects and then evaporates after a minute or so. Shampoo and conditioner that is massaged in and then towel-dried as normal, with no rinsing required. These could be very useful in hospital or bedridden at home, as well as when travelling. Here is the link:
http://www.waterlessltd.co.uk
I have added a link for cpaps and bipaps because if you can't get funding to buy a bipap machine it can be extremely difficult to find them, and even more difficult to get one at even a semi-affordable price. So here is a link to a website that sells second-hand cpap and bipap machines. A person with leukodystrophy will probably benefit best from a bipap machine because they assist with breathing out as well as breathing in. The link is American, but it should be possible to order it - though you may need to contact the seller for importation tax rates and delivery costs.
http://www.secondwindcpap.com/Used_CPAP.html
When using a bipap giving the person dry air can cause a dry nose and mouth, and sometimes bleeding from the nose. To get around this problem a heater-humidifier can be bought which delivers heated, humidified air. Some bipap machines come with a built in heater-humidifier. Distilled, deionised water should be used rather than tap water, otherwise you'll get problems like limescale. Another problem is rainout - where water collects in the mask and pools on the face. This can be overcome by making sure the hose tubing through which the air flows into the mask doesn't get so cold that condensation can form on it. This can be done by purchasing a bipap hose insulator, which is reasonably cheap and they can be attractive looking. They are easy enough to find on ebay and amazon among other places, but here is a link to start with:
http://www.eu-pap.co.uk/6ft-fleece-tube-wrap-white.html
My last link is to an oxygen concentrator. If the person with leukodystrophy is suffering from a respiratory infection or any other thing that makes their oxygen levels drop despite using a bipap, a relatively cheap and portable way of providing that oxygen is by using a concentrator, rather than a cylinder. This takes air from the room and modifies it in such a way that the oxygen content is increased. Here is the link. Again it is American, rather than British, but it may help nevertheless.
http://www.oxygenconcentrators.org/info/eclipse/
http://www.waterlessltd.co.uk
I have added a link for cpaps and bipaps because if you can't get funding to buy a bipap machine it can be extremely difficult to find them, and even more difficult to get one at even a semi-affordable price. So here is a link to a website that sells second-hand cpap and bipap machines. A person with leukodystrophy will probably benefit best from a bipap machine because they assist with breathing out as well as breathing in. The link is American, but it should be possible to order it - though you may need to contact the seller for importation tax rates and delivery costs.
http://www.secondwindcpap.com/Used_CPAP.html
When using a bipap giving the person dry air can cause a dry nose and mouth, and sometimes bleeding from the nose. To get around this problem a heater-humidifier can be bought which delivers heated, humidified air. Some bipap machines come with a built in heater-humidifier. Distilled, deionised water should be used rather than tap water, otherwise you'll get problems like limescale. Another problem is rainout - where water collects in the mask and pools on the face. This can be overcome by making sure the hose tubing through which the air flows into the mask doesn't get so cold that condensation can form on it. This can be done by purchasing a bipap hose insulator, which is reasonably cheap and they can be attractive looking. They are easy enough to find on ebay and amazon among other places, but here is a link to start with:
http://www.eu-pap.co.uk/6ft-fleece-tube-wrap-white.html
My last link is to an oxygen concentrator. If the person with leukodystrophy is suffering from a respiratory infection or any other thing that makes their oxygen levels drop despite using a bipap, a relatively cheap and portable way of providing that oxygen is by using a concentrator, rather than a cylinder. This takes air from the room and modifies it in such a way that the oxygen content is increased. Here is the link. Again it is American, rather than British, but it may help nevertheless.
http://www.oxygenconcentrators.org/info/eclipse/
Wednesday, 27 January 2010
Getting Help
Caring for a person with leukodystrophy will most likely be, in one way or another, a twenty-four hour job. As such, nobody reasonable could expect one or even two parents/relatives to be physically and mentally able to carry out the entire care of their loved one with leukodystrophy. Because of budgets and stringent rules about who gets help and when, the hours of home nursing provided by the council will probably not come anywhere close to what you actually need. You’ll probably get only a few hours a week, and possibly a night aid.
Because of this lack of help versus need for help, you as parents may be pressured by doctors, council or even family members to put your child with leukodystrophy into a hospice hospital, home or other institution. There is nothing at all wrong with this if you and the person with leukodystrophy are happy with it, but it should be your decision and must not be forced upon you.
For this reason, if your wish is for your loved one with leukodystrophy to be cared for at home, I think it’s important to advertise a need for volunteers. This can be done in a local paper, by circulated email or a website, advertised in a doctor’s surgery, school (whether special needs or not) or in the window of the post office. Several volunteers may reply, but a proportion of volunteers will probably not turn up. Sadly one can’t simply assume everyone who says they will help actually will. Some people just volunteer to make themselves feel good and are too apprehensive or (pre)occupied to actually follow it through. But of those who do follow through, it may be possible for a rota to be drawn up. Some people may even volunteer/be willing to help you with cleaning, gardening or cooking, which I am sure would be invaluable, especially as a treat!
If your loved one with leukodystrophy is a child, then whether they go to a mainstream or special needs school, class-mates will probably be fascinated by how your child is cared for, and eager to learn and help. If you let them help at weekends or after school, this is not exploitation! It is merely eagerness to be a friend and to learn – classmates can potentially be an enormous help, and a great entertainment for your child.
You may be thinking that you just couldn’t blatantly ask for people to give up their time to work for nothing. This is an understandable worry, but I think it is probably unfounded in most communities. If people are at all reasonable they will see that you didn’t want to be in this situation, and would give anything for your loved one to return to full health and not need all this extra care. If they are fully informed of the nature of leukodystrophy, they should be able to see that your child being disabled is something that you could not have prevented, and that you are simply being creative in finding ways to make a good quality of life for them. They will probably be glad of an opportunity to do something to help, even if it’s much smaller than the sample rota implies. Furthermore, if they have ever met your loved one, many of them will have been deeply moved by their personality and ‘plight.’
In the case of a child, ‘plight’ probably need not be the way they see their situation. For a child - even one who struggles daily, their physical condition will likely become to them in time just their way of life. Surrounded by cheerful, honest, determined people who show compassion but do not over-pity them, they may well learn to just take the rough with the smooth.
Another great source of help is a hospice association (I have provided a link in the 'Useful Organisations' post. These provide volunteer helpers who can come out on home visits. They also provide hospice facilities with activities aimed specially for people of all ages and abilities (including relatives of the loved one with leukodystrophy), and helpers specifically trained to work with profoundly disabled people. Going into a hospice does not mean waiting for the end – rather, a stabilisation of symptoms and/or a break for parents and carers.
Certain family holidays are of a nature such that the loved one with leukodystrophy might not get any fun out of them. Arranging a week at a hospice or care home for the loved while you go off is not abandoning them. With research into an appropriate place to spend that time, they will be in capable, caring, experienced hands, and they will almost certainly get a lot of pleasure and probably make several friends. Furthermore, it allows you to come back from your family holiday much less frayed and well rested, ready to take up the challenges of caring for the loved one with leukodystrophy again.
Similarly to a hospice, there are respite care centres for people with disabilities, that can take your loved one with leukodystrophy in for just the day, or for a short stay. Again, these provide one-to-one care and stimulation, with highly trained and experienced carers.
The final help option, particularly for children, is partial fostering. This may sound like admitting defeat at first glance, or as though I’m implying you should give the loved one up, but this is far from the truth. The loved one simply spends stretches of time at (a) trained foster parent/parents’ house, and is made a full and valued part of the family while they are there. The period when your loved one with leukodystrophy is at the foster parents’ house gives you a chance to devote yourself to your other children, your house, your friends, your pets, your relatives or your spouse. This option is obviously much more personal than a hospice or respite care centre can be, so it’s essential that both you as a carer/relative, and the loved one with leukodystrophy, get on well with the foster parent(s), and that he and/or she is/are committed and devoted.
http://www.thefca.co.uk/placement.php
Because of this lack of help versus need for help, you as parents may be pressured by doctors, council or even family members to put your child with leukodystrophy into a hospice hospital, home or other institution. There is nothing at all wrong with this if you and the person with leukodystrophy are happy with it, but it should be your decision and must not be forced upon you.
For this reason, if your wish is for your loved one with leukodystrophy to be cared for at home, I think it’s important to advertise a need for volunteers. This can be done in a local paper, by circulated email or a website, advertised in a doctor’s surgery, school (whether special needs or not) or in the window of the post office. Several volunteers may reply, but a proportion of volunteers will probably not turn up. Sadly one can’t simply assume everyone who says they will help actually will. Some people just volunteer to make themselves feel good and are too apprehensive or (pre)occupied to actually follow it through. But of those who do follow through, it may be possible for a rota to be drawn up. Some people may even volunteer/be willing to help you with cleaning, gardening or cooking, which I am sure would be invaluable, especially as a treat!
If your loved one with leukodystrophy is a child, then whether they go to a mainstream or special needs school, class-mates will probably be fascinated by how your child is cared for, and eager to learn and help. If you let them help at weekends or after school, this is not exploitation! It is merely eagerness to be a friend and to learn – classmates can potentially be an enormous help, and a great entertainment for your child.
You may be thinking that you just couldn’t blatantly ask for people to give up their time to work for nothing. This is an understandable worry, but I think it is probably unfounded in most communities. If people are at all reasonable they will see that you didn’t want to be in this situation, and would give anything for your loved one to return to full health and not need all this extra care. If they are fully informed of the nature of leukodystrophy, they should be able to see that your child being disabled is something that you could not have prevented, and that you are simply being creative in finding ways to make a good quality of life for them. They will probably be glad of an opportunity to do something to help, even if it’s much smaller than the sample rota implies. Furthermore, if they have ever met your loved one, many of them will have been deeply moved by their personality and ‘plight.’
In the case of a child, ‘plight’ probably need not be the way they see their situation. For a child - even one who struggles daily, their physical condition will likely become to them in time just their way of life. Surrounded by cheerful, honest, determined people who show compassion but do not over-pity them, they may well learn to just take the rough with the smooth.
Another great source of help is a hospice association (I have provided a link in the 'Useful Organisations' post. These provide volunteer helpers who can come out on home visits. They also provide hospice facilities with activities aimed specially for people of all ages and abilities (including relatives of the loved one with leukodystrophy), and helpers specifically trained to work with profoundly disabled people. Going into a hospice does not mean waiting for the end – rather, a stabilisation of symptoms and/or a break for parents and carers.
Certain family holidays are of a nature such that the loved one with leukodystrophy might not get any fun out of them. Arranging a week at a hospice or care home for the loved while you go off is not abandoning them. With research into an appropriate place to spend that time, they will be in capable, caring, experienced hands, and they will almost certainly get a lot of pleasure and probably make several friends. Furthermore, it allows you to come back from your family holiday much less frayed and well rested, ready to take up the challenges of caring for the loved one with leukodystrophy again.
Similarly to a hospice, there are respite care centres for people with disabilities, that can take your loved one with leukodystrophy in for just the day, or for a short stay. Again, these provide one-to-one care and stimulation, with highly trained and experienced carers.
The final help option, particularly for children, is partial fostering. This may sound like admitting defeat at first glance, or as though I’m implying you should give the loved one up, but this is far from the truth. The loved one simply spends stretches of time at (a) trained foster parent/parents’ house, and is made a full and valued part of the family while they are there. The period when your loved one with leukodystrophy is at the foster parents’ house gives you a chance to devote yourself to your other children, your house, your friends, your pets, your relatives or your spouse. This option is obviously much more personal than a hospice or respite care centre can be, so it’s essential that both you as a carer/relative, and the loved one with leukodystrophy, get on well with the foster parent(s), and that he and/or she is/are committed and devoted.
http://www.thefca.co.uk/placement.php
Ketogenic Diet
Background Information
This is a diet used to control seizures that won't go away no matter what drugs/therapy/surgery have been used. You may have heard of it - but it's often labelled as maverick, unpalatable or old fashioned. Obviously there is a degree of potential truth in each of these things, but the negative connotations these descriptions conjure should not put people off as there are few disadvantages that can't be overcome with information, imagination and careful management.
The Diet
The diet centres around using extremely high fats, adequate protein and very, very low carbohydrates. The ratio of fat to carbohydrate and protein combined is usually 4:1 but can be lower or higher, depending on what the dietician recommends. Most peoples' bodies use glucose from carbohydrates to keep the brain supplied with energy. However, the ketogenic diet removes these carbohydrates and replaces them with fat, forcing the body to use this as energy instead. Because the body cannot burn fat completely when we take out the carbohydrates, it produces 'ashes' - called ketones. These can take the place of glucose in providing energy to the brain. It is thought that the use of ketones instead of glucose changes the structure of cell membranes in the brain, making them more electrically stable.
The diet sounds like the Atkins diet, and in a sense it is like that, except that the ratio of fat to carbohydrate is much higher than in the Atkins diet. Also the ketogenic diet requires much more rigorous adherence and you need to work more closely with a dietician than for Atkins.
Side Effects of the ketogenic Diet
Contrary to what one might think, this doesn't make a person fat, nor does it usually increase their chances of heart disease. That said, everything must be consumed according to a strict plan: no more, no less. It is absolutely essential that you find a dietician willing to work with you, because the diet will not work unless it is followed to the letter. There is a slightly higher risk of kidney stones, and a slightly higher risk of constipation. Some people feel extra hunger and thirst in the first few days of starting the diet, but usually these go away within a few days/weeks.
Evidence for the Diet
Most evidence for the ketogenic diet is anecdotal, but there have been some studies validating the claims that the diet works. There have been reported hugely positive effects - reports of intractable seizures being brought completely under control and sometimes even eradicated within a matter of months - to the extent that the patient was weaned off all medication. Whilst this may not be the case for every person, there was one study in which 50% of people claimed some improvements from the diet. Also the diet need not be adhered to permenantly - if it is stuck to through the vulnerable stages (e.g. growth spurts, childhood), there is a good chance that the person can come off the diet and remain seizure free.
If you think this diet could help then talk to your dietician about it. Some dieticians have not heard of it, or have heard the stereotypical view of it, or don't believe in it. Whilst they are experts and I am not, I would highly recommend getting a second opinion before dismissing the idea of the diet.
Links
A complete nutrition ketogenic oral/tube feeding formula
http://www.shs-nutrition.com/products/ketocal
A family who have a daughter following the ketogenic diet. They demonstrate how to make tasty ketogenic recipes, whilst following the strict diet.
http://www.youtube.com/user/tscottshell
A website about the use of the ketogenic diet, including recipes and testimonies
http://www.charliefoundation.org/
This is a diet used to control seizures that won't go away no matter what drugs/therapy/surgery have been used. You may have heard of it - but it's often labelled as maverick, unpalatable or old fashioned. Obviously there is a degree of potential truth in each of these things, but the negative connotations these descriptions conjure should not put people off as there are few disadvantages that can't be overcome with information, imagination and careful management.
The Diet
The diet centres around using extremely high fats, adequate protein and very, very low carbohydrates. The ratio of fat to carbohydrate and protein combined is usually 4:1 but can be lower or higher, depending on what the dietician recommends. Most peoples' bodies use glucose from carbohydrates to keep the brain supplied with energy. However, the ketogenic diet removes these carbohydrates and replaces them with fat, forcing the body to use this as energy instead. Because the body cannot burn fat completely when we take out the carbohydrates, it produces 'ashes' - called ketones. These can take the place of glucose in providing energy to the brain. It is thought that the use of ketones instead of glucose changes the structure of cell membranes in the brain, making them more electrically stable.
The diet sounds like the Atkins diet, and in a sense it is like that, except that the ratio of fat to carbohydrate is much higher than in the Atkins diet. Also the ketogenic diet requires much more rigorous adherence and you need to work more closely with a dietician than for Atkins.
Side Effects of the ketogenic Diet
Contrary to what one might think, this doesn't make a person fat, nor does it usually increase their chances of heart disease. That said, everything must be consumed according to a strict plan: no more, no less. It is absolutely essential that you find a dietician willing to work with you, because the diet will not work unless it is followed to the letter. There is a slightly higher risk of kidney stones, and a slightly higher risk of constipation. Some people feel extra hunger and thirst in the first few days of starting the diet, but usually these go away within a few days/weeks.
Evidence for the Diet
Most evidence for the ketogenic diet is anecdotal, but there have been some studies validating the claims that the diet works. There have been reported hugely positive effects - reports of intractable seizures being brought completely under control and sometimes even eradicated within a matter of months - to the extent that the patient was weaned off all medication. Whilst this may not be the case for every person, there was one study in which 50% of people claimed some improvements from the diet. Also the diet need not be adhered to permenantly - if it is stuck to through the vulnerable stages (e.g. growth spurts, childhood), there is a good chance that the person can come off the diet and remain seizure free.
If you think this diet could help then talk to your dietician about it. Some dieticians have not heard of it, or have heard the stereotypical view of it, or don't believe in it. Whilst they are experts and I am not, I would highly recommend getting a second opinion before dismissing the idea of the diet.
Links
A complete nutrition ketogenic oral/tube feeding formula
http://www.shs-nutrition.com/products/ketocal
A family who have a daughter following the ketogenic diet. They demonstrate how to make tasty ketogenic recipes, whilst following the strict diet.
http://www.youtube.com/user/tscottshell
A website about the use of the ketogenic diet, including recipes and testimonies
http://www.charliefoundation.org/
Green Goo
Background information
Thank you to Kim Behnken, mother of Reese (metachromatic leukodystrophy), who has given me details about Green Goo (passed on to her by Charlotte Logan, another MLD parent). Kim and many other families who care for a loved one with leukodystrophy use this recipe to keep their loved ones who have leukodystrophy a good weight and in good health. In many respects it is very similar to the previous blog entry 'power juice', but with some ingredients added and some removed.
Reese uses vivonex (just like Shira!) as an overnight feed and starts green goo in the morning three hours after her overnight feed has finished. Vivonex is a complete oral/tube feeding formula that consists of free amino acids rather than whole protein, and so is easier to digest. Patients under stress may well tolerate free amino acids better than whole protein. Again, a dietician is the person to consult before starting or changing any feeding regimes, and they can also help determine how much of each of the green goo ingredients will be needed for the individual with leukodystrophy. Here is a link to vivonex:
http://www.nestle-nutrition.com/products/Family.aspx?FamilyId=345ae4e7-5dd3-4a5e-9abb-3eca340c3c3a
Equipment Needed to make green goo
Freezable storage containers
Juicer
Blender
Ingredients for green goo
Spinach
Carrots
2 Salmon (pouches)
Organic Smoothe Peanutbutter*
Avacados
Bananas*
Kiwi
Blueberries
Squash
Cucumbers
Broccoli
(Prune puree)
How to Make
Juice all the ingredients with the exception of the bananas, peanut butter, avocadoes and salmon
Add to the blender all juiced ingredients along with chopped avocado, chopped banana, peanut butter and salmon
Blend
Strain
Freeze individual servings in separate storage containers.
Use as required/directed by a dietician
* Elvis Presley loved the combination of peanut butter and bananas, apparently!
Thank you to Kim Behnken, mother of Reese (metachromatic leukodystrophy), who has given me details about Green Goo (passed on to her by Charlotte Logan, another MLD parent). Kim and many other families who care for a loved one with leukodystrophy use this recipe to keep their loved ones who have leukodystrophy a good weight and in good health. In many respects it is very similar to the previous blog entry 'power juice', but with some ingredients added and some removed.
Reese uses vivonex (just like Shira!) as an overnight feed and starts green goo in the morning three hours after her overnight feed has finished. Vivonex is a complete oral/tube feeding formula that consists of free amino acids rather than whole protein, and so is easier to digest. Patients under stress may well tolerate free amino acids better than whole protein. Again, a dietician is the person to consult before starting or changing any feeding regimes, and they can also help determine how much of each of the green goo ingredients will be needed for the individual with leukodystrophy. Here is a link to vivonex:
http://www.nestle-nutrition.com/products/Family.aspx?FamilyId=345ae4e7-5dd3-4a5e-9abb-3eca340c3c3a
Equipment Needed to make green goo
Freezable storage containers
Juicer
Blender
Ingredients for green goo
Spinach
Carrots
2 Salmon (pouches)
Organic Smoothe Peanutbutter*
Avacados
Bananas*
Kiwi
Blueberries
Squash
Cucumbers
Broccoli
(Prune puree)
How to Make
Juice all the ingredients with the exception of the bananas, peanut butter, avocadoes and salmon
Add to the blender all juiced ingredients along with chopped avocado, chopped banana, peanut butter and salmon
Blend
Strain
Freeze individual servings in separate storage containers.
Use as required/directed by a dietician
* Elvis Presley loved the combination of peanut butter and bananas, apparently!
Tuesday, 26 January 2010
Diaphragmatic Paralysis
A parent who has a child with metachromatic leukodystrophy recently raised this in her blog. Apparently people with leukodystrophy can develop something called diaphragmatic paralysis. This is when one half of the diaphragm becomes paralysed, which can lead to a lung collapsing. Needless to say this would be a serious complication during an illness for a person with leukodystrophy. To prevent this going unnoticed, if a chest X-ray is required during illness, it would be wise to tell the technician carrying out the X-ray that this is a possibility, and ask them to check for this during the procedure.
Friday, 15 January 2010
POWER JUICE
Rationale
‘Power Juice’ is taken from a recipe by Brad and Maxine Fisher, whose daughter, Shira, has SMA type 1. They follow an amino acid diet using vivonex. You can discuss with a dietician and/or doctor/neurologist whether the person with leukodystrophy would benefit or not from such a diet.
This recipe is the special ‘juice’ they add to Shira’s vivonex. Again a doctor or dietician or nutritionist can recommend amounts of different ingredients. The juice provides lots of fibre, a wide range vitamins and minerals as well as beneficial fatty acids, slow energy release and a good balance of sodium and potassium. The last of these can help prevent heart disease.
Because it is (mostly) raw, rather than unpasteurised (fruit juice is pasteurised too, like milk), the nutrients aren’t degraded. The resulting juice is therefore full of natural beneficial chemicals such as active enzymes (which are destroyed by heat), which can apparently really help digestion, possibly making the person with leukodystrophy less ‘sicky’ or reducing reflux.
Aside from this a good complement of natural nutrients, as well as probiotics, may help to dramatically reduce infections.
Foods used by the Fishers (check with doctor/dietician if possible):
Apples
Pears
Celery
Spinach
Avocado
Banana
Cooked yam (not sweet potato – sweet potatoes are orange inside – yams are white)
Organic, shop bought undiluted prune juice
Equipment
Juicer – preferably electric
Blender
Medium-fine strainer/sieve (some pulp getting through will be more nutricious)
Optional – grater (may help to blend the mixture better to grate it first)
Glass jars with lids
To Make:
Cut up all fruit to be juiced into small places
Place fruit and spinach in juicer and juice. If need be blend after juicing
Pour through strainer to take out large lumps that won’t go through a feeding tube.
Some sediment will still remain but this is fibre and is good.
Get the yam, wash and scrub it clean. Peel it and cut it into slices or chunks,
Boil the yam chunks until they are soft. Allow it to cool a little so it is not piping hot.
Open the avocado, scoop out the inside, and cut into chunks.
Add the yam chunks, along with the avocado to the juice, add prune juice, some water and the probiotic
Blend and strain again
Sterilise the glass jars either by boiling in water or microwaving (with the lids off!) half full of water for one minute.
Pour the mixture in to the jars, put the caps on tightly and store in the fridge for no more than four days. This can be added to tube feed or given as a supplemental drink.
Other Suggestions for foods to add (check with doctor/dietician if possible)
Royal jelly
Kale
Quinoa
Kiwi
Spirulina
Cranberries (help reduce the likelihood of urinary tract infections)
Actimel, yakkult or another probiotic
‘Power Juice’ is taken from a recipe by Brad and Maxine Fisher, whose daughter, Shira, has SMA type 1. They follow an amino acid diet using vivonex. You can discuss with a dietician and/or doctor/neurologist whether the person with leukodystrophy would benefit or not from such a diet.
This recipe is the special ‘juice’ they add to Shira’s vivonex. Again a doctor or dietician or nutritionist can recommend amounts of different ingredients. The juice provides lots of fibre, a wide range vitamins and minerals as well as beneficial fatty acids, slow energy release and a good balance of sodium and potassium. The last of these can help prevent heart disease.
Because it is (mostly) raw, rather than unpasteurised (fruit juice is pasteurised too, like milk), the nutrients aren’t degraded. The resulting juice is therefore full of natural beneficial chemicals such as active enzymes (which are destroyed by heat), which can apparently really help digestion, possibly making the person with leukodystrophy less ‘sicky’ or reducing reflux.
Aside from this a good complement of natural nutrients, as well as probiotics, may help to dramatically reduce infections.
Foods used by the Fishers (check with doctor/dietician if possible):
Apples
Pears
Celery
Spinach
Avocado
Banana
Cooked yam (not sweet potato – sweet potatoes are orange inside – yams are white)
Organic, shop bought undiluted prune juice
Equipment
Juicer – preferably electric
Blender
Medium-fine strainer/sieve (some pulp getting through will be more nutricious)
Optional – grater (may help to blend the mixture better to grate it first)
Glass jars with lids
To Make:
Cut up all fruit to be juiced into small places
Place fruit and spinach in juicer and juice. If need be blend after juicing
Pour through strainer to take out large lumps that won’t go through a feeding tube.
Some sediment will still remain but this is fibre and is good.
Get the yam, wash and scrub it clean. Peel it and cut it into slices or chunks,
Boil the yam chunks until they are soft. Allow it to cool a little so it is not piping hot.
Open the avocado, scoop out the inside, and cut into chunks.
Add the yam chunks, along with the avocado to the juice, add prune juice, some water and the probiotic
Blend and strain again
Sterilise the glass jars either by boiling in water or microwaving (with the lids off!) half full of water for one minute.
Pour the mixture in to the jars, put the caps on tightly and store in the fridge for no more than four days. This can be added to tube feed or given as a supplemental drink.
Other Suggestions for foods to add (check with doctor/dietician if possible)
Royal jelly
Kale
Quinoa
Kiwi
Spirulina
Cranberries (help reduce the likelihood of urinary tract infections)
Actimel, yakkult or another probiotic
Vitamin B12
I have just read in a personal web page that vitamin B12 is important in the formation and maintenence of myelin. This is the thing that is depleted in patients with leukodystrophy, multiple sclerosis, Charcot Marie Tooth and other diseases like these. It helps metabolise fatty acids from food to form the building blocks of myelin. It is also important for maintaining the nerves that the myelin insulates, so even if myelin is depleted, vitamin B12 is needed to make the most of what little function remains. It would certainly be worth looking for a vitamin B12 supplement to include in the person with leukodystrophy's diet (with doctor's approval preferably, of course). And don't forget to include it in your own either(!)
Thursday, 14 January 2010
Beckman Oral Motor Therapy
Me being absent minded, I can't remember if I have already blogged about this but in case not...this is a therapy of oral motor exercises for people with disorders like leukodystrophy, motor neurone disease and other disorders that affect nerves and movement of the body and face. It helps prevent their jaw from stiffening - through lack of movement - into a rigid position that is uncomfortable and/or affects day to day living. I don't know much about it, but I'll keep you posted. Meanwhile, here is the link:
http://www.beckmanoralmotor.com/
http://www.beckmanoralmotor.com/
A Warning About Artificial Ventilation
In a past post I talked about keeping airways clean and clear. Just to prove I am no doctor and that you should check with a pulmonary specialist about everything I say before doing it, there is a danger of over-ventilation with a bipap machine. This causes very low carbon dioxide levels which, believe it or not, can cause problems due to abnormal blood chemistry.
They are more expensive but if a doctor is refusing to treat the person with leukodystrophy, and won't point you in any direction, and you can't find any other advice (I have posted charity and organisation names in previous posts), it is probably best to seek out a bipap machine with a computer control. These machines can assess how much help the person needs with breathing, as well as monitor each breath, and deliver pressure changes accordingly. This makes it harder to over-ventilate or under-ventilate.
Philips Respironics supply such a machine. The link to their website is:
http://bipapsynchrony.respironics.com/
They are more expensive but if a doctor is refusing to treat the person with leukodystrophy, and won't point you in any direction, and you can't find any other advice (I have posted charity and organisation names in previous posts), it is probably best to seek out a bipap machine with a computer control. These machines can assess how much help the person needs with breathing, as well as monitor each breath, and deliver pressure changes accordingly. This makes it harder to over-ventilate or under-ventilate.
Philips Respironics supply such a machine. The link to their website is:
http://bipapsynchrony.respironics.com/
Wednesday, 2 December 2009
Multi Purpose Alarm
I have just discovered a new type of monitor manufactured by an Australian company called EC international. I am not sure if it is available in the UK but I'll post about it in case it helps someone. You may be able to contact them and have them supply it - there are no specifications on the website. The monitor is called My Angel iMonitor. The monitor and sensors clips onto a nappy or underwear, and there is a hand held wireless receiver that the carer takes with them that bleeps when an alarm in the monitor goes off. It has multiple functions:
- It can sense abnormal movements and muscles and bleep the carer - so muscle spasms, exercises, pain and seizures can be detected
- It can sense somebody falling and bleep
- It can bleep the carer when it is time to give feeds or medications
- It can sense multiple urinations and defecations and it bleeps when these occur. It can also display the time since the last urinations and defecations (it counts them separately from each other).
- It can allow the person wearing it to call a carer by pressing a button
- It can detect room temperature and bleep the carer when it gets too hot or too cold
- It can read the position of the person when they are lying in bed, which may prevent migration across the bed and falls.
- It can sense if the person wanders off or is abducted.
It doesn't touch the person's skin except possibly for a small piece of the clip that clips onto the nappy or underwear, and the urine and feces sensors are not placed inside the nappy or underwear; they are stuck onto the outside of it.
Here is the link for more information:
http://www.myangelmonitor.com/index.html
- It can sense abnormal movements and muscles and bleep the carer - so muscle spasms, exercises, pain and seizures can be detected
- It can sense somebody falling and bleep
- It can bleep the carer when it is time to give feeds or medications
- It can sense multiple urinations and defecations and it bleeps when these occur. It can also display the time since the last urinations and defecations (it counts them separately from each other).
- It can allow the person wearing it to call a carer by pressing a button
- It can detect room temperature and bleep the carer when it gets too hot or too cold
- It can read the position of the person when they are lying in bed, which may prevent migration across the bed and falls.
- It can sense if the person wanders off or is abducted.
It doesn't touch the person's skin except possibly for a small piece of the clip that clips onto the nappy or underwear, and the urine and feces sensors are not placed inside the nappy or underwear; they are stuck onto the outside of it.
Here is the link for more information:
http://www.myangelmonitor.com/index.html
Monday, 9 November 2009
Effective Infection Control
With winter and swine flu, I thought I'd post a general blog about controlling infections which, aside from apnea, are one of the main causes of death in leukodystrophy patients. You don't need to follow all of these unless there is a very vigorous need to control infections (such as immune system compromise after a bone marrow transplant). I am not a doctor, nurse or transplant advisor or anything - these were just ideas I collected from multiple sources and brought together.
General
- Sterilise all feeding equipment daily
- Give an antibacterial-antiviral such as sambucol, olive leaf extract or eccinacea at the first hint of any infection.
- Wash hands regularly throughout the day, using hot water and an antibacterial soap.
- Wash hands before handling the feeding tube, doing breathing treatments or doing anything near the person's mouth
- Use surgical gloves when dealing with breathing treatments or feeding tube, and wipe the feeding tube site with an antiseptic when changing it.
- Wear a facemask when giving breathing treatments or when dealing with the feeding tube
- Vaccume the floor and disinfect surfaces daily
- Have the person wear a facemask when outside in a crowded area. Give the person a full body scrub and put their clothes for laundry after being in a crowded area. Do the same for yourself.
- Do not allow anyone into your house or near you or the person, who has had an infection in the last week, or who has been in contact with someone who has had an infection in the last week.
- Get the person and yourself seasonal, and any other, flu vaccines
- Clean gastrostomy feeding tube sites in the morning and evening with warm water and TCP.
- If someone who was infected within a week ago, or was associated with someone with an infection in the last week has been in the house, vaccume all carpets, wash all carpetless floors with hot water and soap, wash and dry all curtains and seat covers/throws, disinfect all surfaces and allow the room to air for a day before allowing the person with leukodystrophy back into it.
Urinary Tract Infections
- When changing the nappy, ensure that the entire area covered by the nappy is wiped with baby wipes, and allowed to thoroughly dry before the new nappy is put on.
- Try to induce a bowel movement in the morning by giving a rectal wash out with warm water and glycerine, so that bowel movements come into minimal contact with the front area. This will also help prevent constipation.
- Try to catheterise the bladder four times a day, as this will ensure all the urine drains from the bladder and does not stagnate. However an indwelling catheter may increase the chance of infection by making it easier for infections to enter into the body from outside.
- Give adequate water through the tube to ensure proper hydration and flushing of the kidneys. The person's doctor should be able to recommend a good total volume to aim for.
Eye Infections
- Wash hands thoroughly and wear a face mask and surgical gloves when doing anything with the eyes.
- Use artificial tears to keep eyes moist and prevent fluid stagnating in them.
Ear, nose and throat infections
- Have a look in the ears, nose and throat each day with a small torch. If there is any redness or swelling in the throat, or any waxy build-up in the ears, see a doctor for antibiotics and/or to get ears syringed. Suck out mucus from the nose and throat, if there is any.
Gastrointestinal Infections
- Clean and disinfect cooking surfaces thoroughly before use
- Feed a probiotic such as yakkult or actimel.
- Wear an apron when cooking to prevent germs from getting from your clothes onto your hands and thus into food. Wash and dry apron after every cooking session.
- Ensure everything you use is within its best before, display until and use-by dates, and also smell/view it to ensure it has not gone bad prematurely.
- Do not re-freeze food after defrosting it once. Do not freeze cooked meat at all. In the fridge ensure raw meats are placed on the lowest shelf, so they cannot drip onto raw foods like cheese, pudding and vegetables.
- Use a clean dish towel every time you dry dishes - put each dish towel for the laundry after . Preferably allow them to drip dry.
- When washing up use water that is the hottest it can be, and an antibacterial washing up liquid. Alternatively use a dishwasher but check the dishes are clean and dry upon coming out.
- Do not sneeze, touch your face, cough or yawn near food
- Wash hands in hot water with soap and dry thoroughly before handling food or dishes, or after putting things in the bin.
- Tie back long hair before cooking.
- Wipe up any spillages immediately. After washing up or wiping up, place the dish cloth or sponge in the laundry and use a new one for next time.
Intravenous Sites
- Change the tape/dressing on these every three days at least. Wash hands in hot water and soap, dry them thoroughly and use a face mask and surgical gloves when dealing with an open IV site. Do not touch face. Always wipe site with an antiseptic swab to disinfect before immediately replacing tape/dressing. Keep the IV away from water, or the tape will peel off and site may become contaminated.
Cuts, Grazes and Open Sores
- Wear a surgical mask and gloves when cleaning these sites
- Wash hands thoroughly first with hot water and soap and dry thoroughly. Do not touch face in the process.
- Wash the site with TCP diluted in warm water, using cotton wool.
- Put antiseptic cream on the site, such as savlon
- Cover site with a waterproof sticking plaster, or sterile non-fluffy dressing if needed/preferred.
Lung Infections
- Carry out normal breathing treatments at an increased frequency throughout the day.
General
- Sterilise all feeding equipment daily
- Give an antibacterial-antiviral such as sambucol, olive leaf extract or eccinacea at the first hint of any infection.
- Wash hands regularly throughout the day, using hot water and an antibacterial soap.
- Wash hands before handling the feeding tube, doing breathing treatments or doing anything near the person's mouth
- Use surgical gloves when dealing with breathing treatments or feeding tube, and wipe the feeding tube site with an antiseptic when changing it.
- Wear a facemask when giving breathing treatments or when dealing with the feeding tube
- Vaccume the floor and disinfect surfaces daily
- Have the person wear a facemask when outside in a crowded area. Give the person a full body scrub and put their clothes for laundry after being in a crowded area. Do the same for yourself.
- Do not allow anyone into your house or near you or the person, who has had an infection in the last week, or who has been in contact with someone who has had an infection in the last week.
- Get the person and yourself seasonal, and any other, flu vaccines
- Clean gastrostomy feeding tube sites in the morning and evening with warm water and TCP.
- If someone who was infected within a week ago, or was associated with someone with an infection in the last week has been in the house, vaccume all carpets, wash all carpetless floors with hot water and soap, wash and dry all curtains and seat covers/throws, disinfect all surfaces and allow the room to air for a day before allowing the person with leukodystrophy back into it.
Urinary Tract Infections
- When changing the nappy, ensure that the entire area covered by the nappy is wiped with baby wipes, and allowed to thoroughly dry before the new nappy is put on.
- Try to induce a bowel movement in the morning by giving a rectal wash out with warm water and glycerine, so that bowel movements come into minimal contact with the front area. This will also help prevent constipation.
- Try to catheterise the bladder four times a day, as this will ensure all the urine drains from the bladder and does not stagnate. However an indwelling catheter may increase the chance of infection by making it easier for infections to enter into the body from outside.
- Give adequate water through the tube to ensure proper hydration and flushing of the kidneys. The person's doctor should be able to recommend a good total volume to aim for.
Eye Infections
- Wash hands thoroughly and wear a face mask and surgical gloves when doing anything with the eyes.
- Use artificial tears to keep eyes moist and prevent fluid stagnating in them.
Ear, nose and throat infections
- Have a look in the ears, nose and throat each day with a small torch. If there is any redness or swelling in the throat, or any waxy build-up in the ears, see a doctor for antibiotics and/or to get ears syringed. Suck out mucus from the nose and throat, if there is any.
Gastrointestinal Infections
- Clean and disinfect cooking surfaces thoroughly before use
- Feed a probiotic such as yakkult or actimel.
- Wear an apron when cooking to prevent germs from getting from your clothes onto your hands and thus into food. Wash and dry apron after every cooking session.
- Ensure everything you use is within its best before, display until and use-by dates, and also smell/view it to ensure it has not gone bad prematurely.
- Do not re-freeze food after defrosting it once. Do not freeze cooked meat at all. In the fridge ensure raw meats are placed on the lowest shelf, so they cannot drip onto raw foods like cheese, pudding and vegetables.
- Use a clean dish towel every time you dry dishes - put each dish towel for the laundry after . Preferably allow them to drip dry.
- When washing up use water that is the hottest it can be, and an antibacterial washing up liquid. Alternatively use a dishwasher but check the dishes are clean and dry upon coming out.
- Do not sneeze, touch your face, cough or yawn near food
- Wash hands in hot water with soap and dry thoroughly before handling food or dishes, or after putting things in the bin.
- Tie back long hair before cooking.
- Wipe up any spillages immediately. After washing up or wiping up, place the dish cloth or sponge in the laundry and use a new one for next time.
Intravenous Sites
- Change the tape/dressing on these every three days at least. Wash hands in hot water and soap, dry them thoroughly and use a face mask and surgical gloves when dealing with an open IV site. Do not touch face. Always wipe site with an antiseptic swab to disinfect before immediately replacing tape/dressing. Keep the IV away from water, or the tape will peel off and site may become contaminated.
Cuts, Grazes and Open Sores
- Wear a surgical mask and gloves when cleaning these sites
- Wash hands thoroughly first with hot water and soap and dry thoroughly. Do not touch face in the process.
- Wash the site with TCP diluted in warm water, using cotton wool.
- Put antiseptic cream on the site, such as savlon
- Cover site with a waterproof sticking plaster, or sterile non-fluffy dressing if needed/preferred.
Lung Infections
- Carry out normal breathing treatments at an increased frequency throughout the day.
Tuesday, 27 October 2009
Good Ways to Vary Posture
It is a good idea to change an immobile person's posture at least once every hour, day and night, not just to ease monotony, but to keep the body supple. Some different suggestions as to fun ways to position them are listed below:
Tilt in space dining chair: If you can get funding a tilt in space dining chair such as Lekkey Advance, will be useful for mealtimes, and a nice change from the wheelchair.
http://www.leckey.com/template.asp?parent=48&pid=218&webArea=1
Feeder seat and positioning wedge: particularly for children, the feeder seat allows the person to play with friends and siblngs at floor level.
http://www.sammonspreston.com/content/PDF/spr/Pediatrics/PediatricForms/FeederSeat_09.pdf
Hammock: Use only with supervision - a lying down alternative to the swing, relaxing and giving a sense of motion. They can be bought with stands as well, which allows them to be used indoors too.
http://www.hammocks.co.uk/hammock-stands.htm
Swing: Also provides a sense of motion. For the UK:
http://uk.specialneedstoys.com/swings/1201-full-support-swing-seats.html
For the US:
http://www.backyardcity.com/swingsets/accessories/JennSwing.htm
Wagon: If a car seat is used, this can be an alternative to a wheelchair. Or the person can lie supine like a mobile bed. It allows comfortable reclining position whilst someone uses the handle to pull the wagon, meaning the person gets an easy change of scene.
http://www.wagonworld.com
In the US:
www.westcoastwagons.com
Fold-out Chair-bed: This can be used in the living room, and folded away to make extra room. Provides comfortable, floor-level positioning for the person.
http://www.nextag.co.uk/fold-out-chair-bed/zzukzB1z38--products-html
Other Useful equipment includes:
-A neck pillow
-A draught excluder, which can be used to prop a person up on their side
-A small cushion for the person's feet
- A V-shaped pillow for propping a person up in bed
- A wedge-shaped pillow for keeping a person's head propped up when lying flat
- A bath/shower seat
http://www.smirthwaite.co.uk/bathing/index.html
- A Car seat
http://www.adaptivemall.com/colorseat.html
Tilt in space dining chair: If you can get funding a tilt in space dining chair such as Lekkey Advance, will be useful for mealtimes, and a nice change from the wheelchair.
http://www.leckey.com/template.asp?parent=48&pid=218&webArea=1
Feeder seat and positioning wedge: particularly for children, the feeder seat allows the person to play with friends and siblngs at floor level.
http://www.sammonspreston.com/content/PDF/spr/Pediatrics/PediatricForms/FeederSeat_09.pdf
Hammock: Use only with supervision - a lying down alternative to the swing, relaxing and giving a sense of motion. They can be bought with stands as well, which allows them to be used indoors too.
http://www.hammocks.co.uk/hammock-stands.htm
Swing: Also provides a sense of motion. For the UK:
http://uk.specialneedstoys.com/swings/1201-full-support-swing-seats.html
For the US:
http://www.backyardcity.com/swingsets/accessories/JennSwing.htm
Wagon: If a car seat is used, this can be an alternative to a wheelchair. Or the person can lie supine like a mobile bed. It allows comfortable reclining position whilst someone uses the handle to pull the wagon, meaning the person gets an easy change of scene.
http://www.wagonworld.com
In the US:
www.westcoastwagons.com
Fold-out Chair-bed: This can be used in the living room, and folded away to make extra room. Provides comfortable, floor-level positioning for the person.
http://www.nextag.co.uk/fold-out-chair-bed/zzukzB1z38--products-html
Other Useful equipment includes:
-A neck pillow
-A draught excluder, which can be used to prop a person up on their side
-A small cushion for the person's feet
- A V-shaped pillow for propping a person up in bed
- A wedge-shaped pillow for keeping a person's head propped up when lying flat
- A bath/shower seat
http://www.smirthwaite.co.uk/bathing/index.html
- A Car seat
http://www.adaptivemall.com/colorseat.html
Rice Cushions - Great for Aromatherapy and Fluctuating Temperatures
Many people in the late stages of leukodystrophy experience repeated infections that cause fever, but also temperature fluctuations due to damaged myelin in areas of the brain that regulate temperature. This is a little trick that may help.
1. Find four cotton cushion covers that are tightly woven, and fill two of them with dry, uncooked rice, corn or buckweat. Don't stuff them full, let there be some room for the filling to flow and the cushions to mould to desired shapes.
2. If you want, add some scent such as dried lavender, cammomile and lemon peel, and put these in the filled cushion covers too.
3. Sew the filled cushion covers firmly shut, place each in an empty cushion cover and sew these shut too. Now you have what look like two cushions.
4. If you want to use them you can either microwave them for a couple of minutes, or put them in the freezer for 45 minutes, depending on whether the person's temperature is too high or low. If the person's temperature is swinging between extremes, one can be microwaved and one can be put in the freezer, and as the temperature fluctuates, you can switch between the two.
WARNING: Make sure the rice does not overheat by heating it for a maximum of 20 seconds at a time in the microwave, then testing the temperature. Place a non-metal glass of water in with the sock to prevent a fire starting. Always test the temperature of the heated/chilled rice cushion on your own cheek or arm first, to make sure it is not uncomfortably hot or cold.
1. Find four cotton cushion covers that are tightly woven, and fill two of them with dry, uncooked rice, corn or buckweat. Don't stuff them full, let there be some room for the filling to flow and the cushions to mould to desired shapes.
2. If you want, add some scent such as dried lavender, cammomile and lemon peel, and put these in the filled cushion covers too.
3. Sew the filled cushion covers firmly shut, place each in an empty cushion cover and sew these shut too. Now you have what look like two cushions.
4. If you want to use them you can either microwave them for a couple of minutes, or put them in the freezer for 45 minutes, depending on whether the person's temperature is too high or low. If the person's temperature is swinging between extremes, one can be microwaved and one can be put in the freezer, and as the temperature fluctuates, you can switch between the two.
WARNING: Make sure the rice does not overheat by heating it for a maximum of 20 seconds at a time in the microwave, then testing the temperature. Place a non-metal glass of water in with the sock to prevent a fire starting. Always test the temperature of the heated/chilled rice cushion on your own cheek or arm first, to make sure it is not uncomfortably hot or cold.
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