Symptom management
Symptom management
My loved one seems uncomfortable and the medical team has suggested so many medications. What should we do?
Given how quickly the disease progresses in younger patients, here is the typical list of medications leukodystrophy specialists suggest when managing the neurological symptoms of the late-infantile and juvenile forms of the disease. Adult patients may be more focused on therapies that help with cognition, memory loss, behavior, socialization, managing work and school. See guidance for Adult-MLD patients.
Prilosec, Gas-X or other similar medications
To treat GERD (or gastroesophageal reflux disease), and gas.
Baclofen
For spasms, nerve pain and seizures.
Senna
For motility (to get the gut moving).
Culturelle
An over-the-counter probiotic to aid digestion and maintains balance of good bacteria in the intestine.
Gabapentin
For nerve pain.
Valium
For muscle tone and seizures.
Keppra
For seizure activity.
Miralax, enemas, and suppositories
For constipation and moving bowels. Over the counter medications are quite effective.
Avoid opioids unless absolutely necessary since they cause more constipation.
Many families report that working with a nutritionist and medical team (including a complex care pediatrician) can ensure your loved one is getting proper nutrition, hydration, and moving their bowels regularly. Nutritionists who work closely with MLD families have had success using MCT oil, adding it to your loved one's diet can help with energy and weight gain. Managing a healthy gut is crucial for MLD patients, you should also have your medical teams check your loved one's gallbladder regularly. It is not uncommon for doctors to remove the gallbladder because of polyps and other complications.
When your loved one vomits or has trouble keeping down feed, it is tempting to assume the problem is caused by the food they are eating. In fact, many "gut" issues are caused by constipation and gas.
"I was focussed on what we fed our daughter but when we worked with our nurse and nutritionist, we found she was so much better when we did a daily suppository, ensured she got lots of fluids, had her electrolytes managed, and just pooped every day. I was giving her valium and other medications and what she needed to do was poop and stay hydrated."
— MLD family
A note on CBD oil
We have not included CBD oil in this list. While some families believe CBD oil is helpful, at present, there is no published medical research to suggest its effectiveness with MLD patients. Doctors report concerns about how CBD oil will interact with other medications and damage the brain when the disease is already doing so much harm to the myelin. However, many MLD families work with their medical teams to use CBD oil even though there is no scientific data at this time to suggest such products help MLD patients.
