Pediatric Familial Hemiplegic Migraines

by Eleanore
(Denver, CO)

I am the mother of a 3 1/2yr old boy who we believe is suffering from what we believe is FHM(familial hemiplegic migraine).

He was initially diagnosed with epilepsy at 14mos. It was found this past summer after he spent 3 days in and out of a coma that he does not in fact have epilepsy. It is now believed that he has FHM or Alternating Hemeplegia of Childhood.

I am having a really hard time finding someone to treat him. We've managed to reduce the number and severity of episodes by decreasing calcium in his diet but it's not enough. We are searching for a FHM Specialist. At this point we will travel anywhere in the country, I just need to find someone to help my little boy.

Eleanore

Answer:

Hi Eleanore,

I understand your frustration, especially as a parent.

I am glad your son is having less attacks. Calcium may play a role both in vascular tissue and in nerve conduction when it comes to the pathology of migraines.

Familial hemiplegic migraine as you know is a childhood migraine variant which is accompanied by fluctuating weakness that can last from minutes to hours. In children, the headache may not be as prominent as the weakness, nausea and vomiting.

I spoke to the neurologists that I work with and we all agree with what is currently accepted in the treatment of this condition:

At the present time there are two ways to treat for children:

Acute treatment: Anti-nausea drugs (reglan), mild sedatives, and pain relievers are generally safe (non-narcotic). Triptans, ergots and vasocontrictors of any type should not be used to abort familial hemiplegic migraine.

Prevention: There are several possibilities here. You did not mention what your son is taking so I will list each of them.

Low dose Elavil is quite good and dose is adjusted to his weight as are all medications. Low dose anti-convulsants that are used in regular migraine prophylaxsis and finally low dose calcium channel blockers are good. Calcium channel blockers are generally the drug of choice in this condition. There is a drug called Flunarizine, which is one of the most effective drugs for true alternating hemiplegia of childhood. It is a calcium channel blocker but unfortunately it is not available in the United States.

Alternative headache treatments included riboflavin and feverfew and magnesium supplementation. Watch the dosing on magnesium as its side effect can be diarrhea.

What you really need is a pediatric neurologist who is willing to work with you on dosing for your son. Many times we see that children tend to respond faster and best on alternative therapies first. This may be due to the fact that their brains are still "plastic" or growing. but there is no migraine research yet to support this. His brain will be finished growing when he is about 20 years old. He has a higher chance of growing out of this than girls do so don't give up hope!

Here is an excellent article on childhood migraine variants that you can discuss with your doctor.

I wish you the best of luck!
Mary Kay Betz MS RPA-C