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
