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.
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