Migraine

my 4 year old son was diagnosed a year ago with severe migraines. Unfortunately his main trigger is the weather. His neurologist has him on periactin, baclofen and trileptal. it had helped control and prevent his worst migraines. but over the past 2 weeks his headaches have become worse. he becomes very pale, underneath his eyes get very dark and his eyes get glassy. he often blinks rapidly and "zones out". i called his neuro today and he raised the dosage of the trileptal and told me to bring him in first thing tomorrow morning. Has anyone taken this medication? I'm concerned about him being on so much medicine for such a long time. Any suggestions?

Hi Brensmom!!!
I'm sorry that I have absolutely no idea about those meds but wanted to send you some hugs!

I can't imagine how difficult it must be for you to watch your precious little boy fighting these migraines!! Bless his sweet heart!!

There are a lot of people here who can give you some good insight and information!!

I'll certainly be thinking about and praying for you and your son!

Cyn

Hi, brensmom, and welcome!

When you get a chance, please take a few minutes to visit our Start Folder, which will give you some idea of our policies and where to find things.

I always feel so much for the small fry with migraine, because there's so little that can be done for them, since research and meds aren't usually studied in kids. It's not fair that we can't do more, and it's particularly hard to see them suffer.

I know almost nothing about the three meds you mentioned, having not taken any of them. We do have an info page on one of them...

TRILEPTAL

Periactin is an antihistamine, and I do recognize it's name popping up from time to time in regard to being used for migraine treatment with kids. Most of the anti-nausea meds are anti-histamines, so it may be prescribed to help with that, though I think I recall that anti-histamines act as a booster for other meds, too.

Baclofen is a muscle relaxant. Generally, they're more effective for tension headache than for migraine. I've never had my muscle relaxant help with a migraine itself, though sometimes it will help the achiness I get in my shoulders with migraine.

Hopefully, your appointment went well this morning, and whatever changes or adjustments he made will help soon.

for both of you. It's so hard to play the wait and see game. We'll keep our hopes and best wishes up for your little guy.

Hi brensmom! I just wanted to stop by and welcome you to the forum. I'm so sorry your son has Migraines.

My Migraine Specialist prescribed Diamox to help with my weather related Migraines. It really has helped reduce the amount of times weather has triggered my Migraines although I'm not sure if Diamox can be given to someone so young.

A great article to help get you started here is:

Learning About Migraines - Where to Start

How did your appointment go the other day? Please keep us posted when you can, k?

Welcome again!

Thanks! Unfortunately his neuro appt. did not go well. we found out that in addition to his migraines, he is also having seizures. he is scheduled for seizure monitoring feb 23rd and 24th. at the appt the dr. decided to take him off the baclofen and increase the trileptal. he thought that since the migraines and rapid blinking were coming back, that it must not be working. well that night was the worst night ever!! bren had the worst migraine that he ever had and had a seizure where the left side of his face didn't move and you couldn't understand what he was saying. I was literally up all night with him. he didn't go back to sleep until thursday night. naturally i called the dr the next day and he put him back on the baclofen because it apparently had been working and that bren was worse than he initially thought. he actually slept all night last night, but i can tell his migraines are about to hit any minute. meanwhile, we will have to wait until the 23rd, though they are trying to get him in sooner.

thanks again for your support, i really appreciate it.

I'm so sorry the med tweaking made things worse, and that you've got to be worried about seizure activity, too. So not fair. I'm keeping my hopes up that they'll manage to see him much sooner than the 23rd, and that the ideas of what to do will go smoothly and help. We're here in the meantime if you need us to jabber to, vent to, or whatever we can do.

Please add my welcome to the pile!

I'm so sorry things are difficult right now. I hate it when children have migraines; it seems so unfair.

I cried reading your post as my 6 year old son Ollie has had the most awful time with severe, frequent migraines and I know just how scary and heartbreaking it is watching them suffer. His migraines started when he was 4. It took us so long to get the right medical treatment and a neurologist who listens and understands.

I learned so much from this site and would credit the wonderful members here for saving my sanity and as it turns out my sons eyesight.

The 23rd is still a long way off when your little one is suffering so do not hesitate to go to the ER or your GP if you have any concerns. I would recommend you document everything by keeping a diary if you are not already doing so. This information was crucial in getting assistance for my son. We also took videos so the Drs could see exactly what was happening. I found having the scientic "data" really was a turning point in his treatment.

Ollie despite having a clear ambultory EEG is actually doing heaps better on a combination of epilespy medication and high blood pressure medication. He has tried so many different types of medication in the past including Periactin. At the moment he is back at school after a 4 month absence and doing well.

We were so frustrated by the constant trial and error approach to medication but finally something is working.

Ollie was eventually diagnosed with IIH....Idiopathic Intracranial Hypertension. This triggers frequent migraines in the same way that some forms of epilespy do.

I hope you find some answers for your son sooner rather than later. It is really hard but just trust your instincts and keep going back to the hospital if you feel you need to.

I am here if you need to talk.

Daisy

Daisy,

Thank you so much!! It helps so much to be able to talk to someone who has gone through what we are going through now. I am so sorry that your son has suffered so much, but am happy to hear he is doing well. Does he suffer from seizures also? May I ask how he was finally diagnosed? I am keeping a daily journal. It seems everyday he gets more sensitive to light and now sounds. This waiting game is agonizing!! I would greatly appreciate any info and/or advice that you would be willing to share with me.

take care,

Cristy

Hi Cristy,

I'm sure Daisy will be along shortly to speak with you too, but I'd like to share some information with you if I may.

I also have Idiopathic Intracranial Hypertension (IIH.) This condition occurs when too much cerebrospinal fluid is produced in the subarachnoid space (the brains middle layer) or the body does not absorb it properly. We have more on this condition you may read in this article: Pseudotumor Cerebri - The Basics

The only definitive test to diagnose IIH is a spianl tap. Some people with IIH have what is called papalledemmia (swollen optic nerves.) and a neurologist may look into a patients eyes, not find any swelling and assume no IIH. This is incorrect. Another bit of information may be helpful: The ONLY definitive way to diagnose pseudotumor cerebri

The other thought that came to mind is a Migraine called Migraine-triggered seizures, sometimes referred to as Migralepsy. It seems to be a Migraine with aura type Migraine the some type of seizure happens during or within about one hour after the Migraine attack. We have some Ask the Clinician questions you can find HERE andHERE.

I hope this helps.

Hi Cristy

Like Nancy said the only way to diagnose IIH is with a lumbar puncture and this is how my son was diagnosed.

Thanks Nancy for the info and the links. Your a great help as always.

There is so much to say and some times it is so hard to find the words.

Ollie never has had a seizure that we know of. He has had the overnight EEG monitoring for epilespy which came up clear but I only found out recently out of 3 days and 2 nights of monitoring they only got 2 hours worth of useful data. He moved around too much in his sleep and kept disloging the electrodes. I videoed his night time movements to show the neurologist and he said it did not look like siezures to him. The whole process took months as the results take a long time to analyze.

All said and done he is doing really well on the epileptic medication. Our Neurologist said that current thinking is that epilespy and migraine are more closely related than intitially thought and needs further research.

Ollie does have speech disturbances that are thought to be more closely aligned to epilespy than migraine hence the decision to treat him for epilespy despite his EEG not showing any eplileptic activity.

Like your son Ollie also had a temporary paralasis of one side of his body and sometimes the corner of his mouth would drop and words and sentences would come out scrambled. If I was to do it all again I would have started videoing this stuff immediately. I know it is hard to think of doing this when your child is suffering but having "medical documentation" was crucial to us. It did not matter what we said had happened....just what could be documented.

We also started taking our son to the ER whenever things were bad just to get the "medical documentation". We got sent home heaps with no or little treatment but we have built a really good relationship with many of the staff at out local childrens hospital now and get great treatment. This was excruciating as a process but necessary so there was some record of his pain and symptoms.

I am so glad your keeping a diary as this also was really useful. I also researched eveything I could about kids migraine, epilespy and eventually IIH. It helped me to understand the Drs and ask the right questions. My husband calls it my PHD.

Ollie also was very light sensitive and sound sensitive. Just before his diagnosis he had a week off school because he was too photophobic to go outside. Everytime he saw daylight he would go white and want to vomit. This was eventually why we saw an ophthalmologist who first thought it was IIH.

I know the waiting game is excruciating and for us the last 2 years have been hell. His pain and symptoms were crippling and he was severely disabled by his frequent migraine attacks. One of the hardest things was that very few people understood just what that could be like. Most people did not know that kids could get migraine and that migraine is so much more than a headache.

My other advice would be to get as much support for yoursef as possible. My husband came to every appointment and helped out every step of the way. The DRs took him more seriously than me. It was also great to have someone else to remember what the Dr said.

Just recently I have started seeing a psychologist for support. She is helping me manage Ollies issues with his health and my own anger about the long horrible process we have gone through over the last 2 years.

My heart goes out to you both. Keep strong and eventually something will work for your son. All the children on this site eventually have improved. Although it is hard to see at the moment eventually something will work.

Sorry for the long ramble. As you can see from my other posts that I am prone to it.

I will keep an eye out for you and please keep us posted on Bren.

Daisy