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
Wednesday, 2 December 2009
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.
Monday, 17 August 2009
Useful Items of Clothing
This is not meant to be a means of advertising, just providing links so the things that I mention can be easily found and seen.
- Tummy Tunnels - For children. Iron on patches for clothing that allow easy access to gastrostomy tubes.
http://www.tummytunnels.com/
- Special needs all-in-one body vests. Prevent draughty gaps. These vests have options that allow access to gastrostomy tubes, and are good for older children who use nappies.
http://www.tanniandanni.com/kidsclothing/poppervests.htm
- Slipper socks. These are good for people who may want shoes off in the house or when in wheelchair, and need footwear that will be both comfortable and warm. The trouser legs can be tucked into them to avoid draughty gaps.
Adult slipper socks: http://www.sockshop.co.uk/by_type/shop-socks/bed_slipper_sogcks/index.html
Child slipper socks: https://www.socksolutions.co.uk/sess/utn;jsessionid=154a892e63b2979/shopdata/0040_Bed+Socks+=26amp=3B+Slipper+Socks/product_details.shopscript?article=0030_FALKE%2B%3D27Catspads%3D27%2BSlipper%2BSocks%2B%3D28Young%2BChildren%3D29%2B%3D28FCATC%3D29
- Muslin squares - good if the person drools saliva. They avoid getting clothes too wet, and getting chaffed skin from too much wiping of the mouth. They are also good if there is a tendency to vomit
http://www.amazon.co.uk/Muslin-squares-pack-of-10/dp/B000Z7BJ8K
- Special needs swim nappy - for incontinent children, teens and adults
http://www.incywincy.net/acatalog/Swimwear_for_Older_Children_Special_Needs__.html
- A crewsaver with a neck support, and a couple of pairs of armbands (one pair for the arms, one for the legs) should enable the person to float unaided in a swimming pool, even if they can't move
- All-in-one UV resistant swim suit. May keep the person warmer in water. This site is American, but the suits are sold in Britain too. Also they are aimed at children but go up to adult size
http://www.funsunwear.com.au/index.php
- Tummy Tunnels - For children. Iron on patches for clothing that allow easy access to gastrostomy tubes.
http://www.tummytunnels.com/
- Special needs all-in-one body vests. Prevent draughty gaps. These vests have options that allow access to gastrostomy tubes, and are good for older children who use nappies.
http://www.tanniandanni.com/kidsclothing/poppervests.htm
- Slipper socks. These are good for people who may want shoes off in the house or when in wheelchair, and need footwear that will be both comfortable and warm. The trouser legs can be tucked into them to avoid draughty gaps.
Adult slipper socks: http://www.sockshop.co.uk/by_type/shop-socks/bed_slipper_sogcks/index.html
Child slipper socks: https://www.socksolutions.co.uk/sess/utn;jsessionid=154a892e63b2979/shopdata/0040_Bed+Socks+=26amp=3B+Slipper+Socks/product_details.shopscript?article=0030_FALKE%2B%3D27Catspads%3D27%2BSlipper%2BSocks%2B%3D28Young%2BChildren%3D29%2B%3D28FCATC%3D29
- Muslin squares - good if the person drools saliva. They avoid getting clothes too wet, and getting chaffed skin from too much wiping of the mouth. They are also good if there is a tendency to vomit
http://www.amazon.co.uk/Muslin-squares-pack-of-10/dp/B000Z7BJ8K
- Special needs swim nappy - for incontinent children, teens and adults
http://www.incywincy.net/acatalog/Swimwear_for_Older_Children_Special_Needs__.html
- A crewsaver with a neck support, and a couple of pairs of armbands (one pair for the arms, one for the legs) should enable the person to float unaided in a swimming pool, even if they can't move
- All-in-one UV resistant swim suit. May keep the person warmer in water. This site is American, but the suits are sold in Britain too. Also they are aimed at children but go up to adult size
http://www.funsunwear.com.au/index.php
Saturday, 15 August 2009
Potential Curative and Palliative Treatments, Scientific and Non-Scientific
I am not actively advocating any of these, and you should definitely talk to a doctor (or even more than one - it is your right to be able to do this), and/or homeopathic expert, and do more research before considering pursuing any of these. The purpose of these being here is to give parents, carers and in some cases patients, the widest range of choices. Leukodystrophy and the secondary problems arisinf from it are tricky to treat, and quality rather than quantity is the most important thing - but that does not always have to mean just taking a person home and loving them.
Potentially Curative
- Bone Marrow Transplant: This may be an option for very mildly symptomatic or asymptomatic metachromatic or adrenoleukodystrophy. Involves killing all the bone marrow in the body using aggressive chemotherapy (this will cause hair loss, vomiting, diahorrea, possibly fevers and rashes, immune reactions, and severe susceptibility to infections). Some young children may be at risk from just the chemotherapy. Then the donor bone marrow is dripped in through an IV line in the chest, and encouraged to grow. Infection susceptibility, graft vs. host disease, and rejection of the donor marrow can be risks for months afterwards, and the child's appearence will be very much altered (although those constantly nearby will not notice so much). Furthermore, the disease may progress for some months afterwards until the marrow cells have grown more, and in some cases transplant will fail to stop disease progression. A specific bone marrow match must also be found, either from within the family, or in the general population. However, if the procedure works, the disease will be slowed or even halted for the time being. The long term effects are not known.
- Cord blood transplant: This is in many ways similar to bone marrow transplant and is used to treat asymptomatic Krabbes Disease. The main difference is that instead of bone marrow being donated, stem cells and blood from the umbillical cord of a newborn infant donor are used. Most children who undergo this kind of transplant have been diagnosed with Krabbes Disease prenatally.
- Lorenzo's Oil: This is used to treat asymptomatic adrenoleukodystrophy, and is a blend of purified oleic acid (found in olive oil) and erucic acid (found in rapeseed oil). It stops the body producing the fatty acids it can't break down, because the same chemical that produces them breaks down oleic and erucic acid - in effect the chemical is 'distracted'. The long term effects of the oil are not known and usually if symptoms of the disease have already begun, the oil does not work. However its efficacy in treating asymptomatic ALD has been fully proven scientifically.
Palliative
- Dimethyl Sulphoxide: Studied Scientifically and reported as somewhat protecting nerves and decreasing inflammation in Krabbes disease
- Nitrizepam: Studied Scientifically and reported as being helpful in reducing irritability and increasing comfort in Krabbes disease
- Gelsemium 30: This is a homeopathic medication sometimes used in the treatment of unspecified leukodystrophies.
- Equal volumes of tincture of myrrh and olive oil, mixed in a teaspoon, heated over a small flame, and once cooled to body temperature, rubbed immediately down the muscles either side of the spine every day. It can't be stored and must be mixed fresh every time. This a supposed treatment for neurological dysfunction, but its efficacy has in no way been proven. However myrrh has long been used as a painkiller, and olive oil rubs easily into skin, because the skin is very fatty. Therefore some insulation of nerves may occur - though the effect, if any, would be extremely slight.
Potentially Curative
- Bone Marrow Transplant: This may be an option for very mildly symptomatic or asymptomatic metachromatic or adrenoleukodystrophy. Involves killing all the bone marrow in the body using aggressive chemotherapy (this will cause hair loss, vomiting, diahorrea, possibly fevers and rashes, immune reactions, and severe susceptibility to infections). Some young children may be at risk from just the chemotherapy. Then the donor bone marrow is dripped in through an IV line in the chest, and encouraged to grow. Infection susceptibility, graft vs. host disease, and rejection of the donor marrow can be risks for months afterwards, and the child's appearence will be very much altered (although those constantly nearby will not notice so much). Furthermore, the disease may progress for some months afterwards until the marrow cells have grown more, and in some cases transplant will fail to stop disease progression. A specific bone marrow match must also be found, either from within the family, or in the general population. However, if the procedure works, the disease will be slowed or even halted for the time being. The long term effects are not known.
- Cord blood transplant: This is in many ways similar to bone marrow transplant and is used to treat asymptomatic Krabbes Disease. The main difference is that instead of bone marrow being donated, stem cells and blood from the umbillical cord of a newborn infant donor are used. Most children who undergo this kind of transplant have been diagnosed with Krabbes Disease prenatally.
- Lorenzo's Oil: This is used to treat asymptomatic adrenoleukodystrophy, and is a blend of purified oleic acid (found in olive oil) and erucic acid (found in rapeseed oil). It stops the body producing the fatty acids it can't break down, because the same chemical that produces them breaks down oleic and erucic acid - in effect the chemical is 'distracted'. The long term effects of the oil are not known and usually if symptoms of the disease have already begun, the oil does not work. However its efficacy in treating asymptomatic ALD has been fully proven scientifically.
Palliative
- Dimethyl Sulphoxide: Studied Scientifically and reported as somewhat protecting nerves and decreasing inflammation in Krabbes disease
- Nitrizepam: Studied Scientifically and reported as being helpful in reducing irritability and increasing comfort in Krabbes disease
- Gelsemium 30: This is a homeopathic medication sometimes used in the treatment of unspecified leukodystrophies.
- Equal volumes of tincture of myrrh and olive oil, mixed in a teaspoon, heated over a small flame, and once cooled to body temperature, rubbed immediately down the muscles either side of the spine every day. It can't be stored and must be mixed fresh every time. This a supposed treatment for neurological dysfunction, but its efficacy has in no way been proven. However myrrh has long been used as a painkiller, and olive oil rubs easily into skin, because the skin is very fatty. Therefore some insulation of nerves may occur - though the effect, if any, would be extremely slight.
Useful Organisations
- Stennis Foundation: Research Metachromatic and other Leukodystrophies
http://www.stennisfoundation.org/web/
- Bethany's Hope: Research Metachromatic and other Leukodystrophies
http://www.bethanyshope.org/
- Brianne's LEAP (Leukodystrophy Education and Awareness Project) of Hope
http://www.briannesleapofhope.org/
- Hunter's Hope: Reseach Krabbes and other types, and push for newborn screening
http://www.huntershope.org/site/PageServer
- MLD Foundation: All things to do with metachromatic leukodystrophy
http://www.mldfoundation.org/
- Adrenoleukodystrophy (ALD) Foundation: All things to do with adrenoleukdystrophy
http://www.aldfoundation.org/
- The myelin project: Research cure and treatment of all de-myelinating disease
http://www.myelin.org/
- CLIMB (Children Living with Inherited MetaBolic disease)
www.climb.org.uk
- Childrens' Hospice UK
www.childhospice.org
- United Leukodystrophy Foundation
www.ulf.org
- Evanosky Foundation - fights metachromatic leukodystrophy and other leukodystrophies:
http://www.evanoskyfoundation.org/
http://www.stennisfoundation.org/web/
- Bethany's Hope: Research Metachromatic and other Leukodystrophies
http://www.bethanyshope.org/
- Brianne's LEAP (Leukodystrophy Education and Awareness Project) of Hope
http://www.briannesleapofhope.org/
- Hunter's Hope: Reseach Krabbes and other types, and push for newborn screening
http://www.huntershope.org/site/PageServer
- MLD Foundation: All things to do with metachromatic leukodystrophy
http://www.mldfoundation.org/
- Adrenoleukodystrophy (ALD) Foundation: All things to do with adrenoleukdystrophy
http://www.aldfoundation.org/
- The myelin project: Research cure and treatment of all de-myelinating disease
http://www.myelin.org/
- CLIMB (Children Living with Inherited MetaBolic disease)
www.climb.org.uk
- Childrens' Hospice UK
www.childhospice.org
- United Leukodystrophy Foundation
www.ulf.org
- Evanosky Foundation - fights metachromatic leukodystrophy and other leukodystrophies:
http://www.evanoskyfoundation.org/
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