Living with RLS/PLMD

My son at the age of 8, was diagnosed with Cyclic Vomiting Syndrome–a migraine of the stomach. This condition made him vomit quite regularly every month from 1 to 5 days. He was treated with Periactin 4 mgs once a day at bedtime. His medication was revised often at this time. When he turned 11 he was no longer throwing up regularly, but was having head migraines and missing a lot of school. The Periactin no longer was working. They started him in on Amitriptyline and played with that medication raising his dose, then decreasing it, stating it was the best medication for him at his age. The doctor thought his problem may be sinus related, so he added Sudafed and B-2.

He complained about his legs hurting at night and not sleeping well, so he took Melatonin as well. His pain medication was ineffective as was the migraine shots and Maxalt. Finally, we had had enough since he only got worse on those medications. Also, I found out the Amitriptyline may interact with Sudafed.

He was weaned off all the medications, and we switched doctors who put him on Propranolol, then another one who added Nortriptyline. The Nortriptyline made him sleep 22 1/2 hours a day and we decided to stop that medication immediately. The Propranolol seemed ineffective, so we as parents decided to take him off that medication as well.

All this time, his symptoms were increasing, pain level included. He was also starting to have severe nausea and diarrhea as well. With all the stress, I believe it brought on Irritable Bowel Syndrome. I got very little support on finding out how to treat this issue from my son’s doctors, so I asked around.

He originally saw a pediatric GI doctor, then 3 neurologists, a chiropractor a chiropractic neurologist/holistic doctor, a homeopathic doctor, and a two Chinese medical doctors, including an accupuncturist. Through one of the Chinese doctors we concluded he had food allergies/sensitivities to many foods and food additives, such as wheat, dairy, soy, MSG, food dyes, soda, shellfish, carrots, onions, and large amts. of garlic. He has been healthier since staying off these items, but his headache has remained.

He also had an upper GI test, an MRI, a veinous MRI multiple blood tests, and two sleep apnea tests done. The 2nd one finally gave us a diagnosis of Periodic Limb Movement Disorder. He’s now back on Periactin and we’re waiting for some results. So far it seems to upset his stomach, which it didn’t do before. One of the things I want to point out is that the doctors for months had him on anti-depressants. I read this can only contribute to PLMD, so it pleases me that our instincts as parents kicked in and on our own, we took him off those meds. He is seeing a new, well-known neurologist who is currently treating him.

We are looking at a year right now since the migraines set in. It’s been since mid-February my son has had a constant headache. His stomach is settling down, his bad headaches very much less common, but it’s still there every morning.

My questions are: Is there any connection between CVS and PLMD? Is anyone else experiencing migraines as a result of PLMD? or is it just a side effect of the lack of sleep? Are there any other children out there as young as 10-11 with PLMD? Any treatments more effective than Periactin?

I just hope [this] will help someone out there and give them hope for a diagnosis and treatment ideas.