I am wanting some advice about whether or not to give my 8 year old child topamax. My child has been suffering with migraines for around 4 years now. The migraines are coming more and more frequently. My doctor suggested 15 mg a day of topamax, but I have been to afraid to try the medication. I have heard of the scary side effects, and wanted to see if anybody out there has given topamax to their child. Thanks for your help.
Stacey,
Hello, and welcome to MyMigraineConnection!
Topamax for children raises a good question. I can't give medical advice, but I can share my opinion as a parent and grandparent with you.
Before we give our children any medication, I think we need to familiarize ourselves with how they work and the potential side effects. If the medication has any potential side effects that could be harmful, as opposed to annoying or inconvenient, then I think we must consider whether the child is mature enough to recognize and report those side effects to us if they occur.
You're correct that Topamax has some serious potential side effects. Is your child old enough, mature enough to tell you if his or her vision is affected? That question may help you make a decision.
You'll see a lot about Topamax these days. Truthfully, that's not necessarily because it's "the best" Migraine preventive out there. It's at least in part because it's the most highly advertised, to both doctors and patients. A little background -- Many medications are prescribed off-label, which means that they're FDA approved for use, but not FDA approved for the specific reason they're prescribed. Almost all meds prescribed for Migraine prevention are prescribed off-label. There are over 100 medications being used for Migraine prevention. Not a single one was actually developed for Migraine prevention, and only 4 have been put through the additional clinical trials to be approved by the FDA specifically for Migraine prevention. Unless a medication has been FDA approved for Migraine prevention, it cannot be advertised for that purpose, and the pharmaceutical company reps who call on doctors can't suggest it. Topamax is the most recently approved of the four approved for Migraine prevention, and the only one of the four still under patent with generics not yet available in the US. Thus, it's being advertised a lot and the reps are talking to the docs about it. Please realize I'm not saying that it doesn't work. It does work well for some people. I just want you to know WHY you're hearing so much about it.
If you decide you're not comfortable with Topamax, there are other medications you can try. Propranolol (Inderal) and periactin are often used for children.
Thank you for creating a SharePost. SharePosts are a form of blogging, and there are many things you can do with them. You can share an experience, suggest something that's helped you, use SharePosts as a Migraine and headache journal, and many other things.
We also have a discussion forum that you may want to check out. Especially if you have questions or are looking for information, you may find the interaction on the forum to be quite helpful. To get to the forum, just look for the orange box marked "Manage" and click on the Migraine Forums link. Because our forums are maintained by a third party, you'll need to register for the forum. You can use the same information you used to create your community log-in if you like. If you want to go directly to the forum, you can click HERE.
Along with your personal "My Home" page and the discussion forum, you'll find links to a great deal of helpful information on the main page of our site, http://www.MyMigraineConnection.com.
If you have any questions, please feel free to post them to the forum or send me a message through my profile.
Welcome again,
Teri Robert
MyMigraineConnection.com Lead Expert
Welcome stacey, and I hope you and your daughter get the help and support you need here. My daughter was on Topamax until recently. She is 5 (almost 6) and was on it for over a year. She did have side effects that led us to discontinue the medicine, but she was on a high dose for her size. The other problem is her age. She wasn't old enough to communicate some of the side effects and we had to notice it first then identify which medicine it came from. She was also on Depakote at the time (and is still on that) and is now on nadolol which she seems to be doing well on. It can be overwhelming when making these kind of decisions. Have you discussed all the options with her doctor? My daughter sees a pediatric headache specialist now and it helps in that they are so up to date on everything regarding headaches in children. I wish you luck as you navigate the medical arena for your daughter. If you need more support, come join us on the forum about migraines in children
Dear Stacey,
I read your letter just now and hope that you decided agains using topamax. I am a Dentist who has been treating tmd for over twenty years during which time I have come to realize that physicians throw drugs at anything they can whether or not they know the cause. I beg of you, find a dentist who is very knowledgeable about TMD and what is called neuromuscular dentistry. If need be I will find someone near you. There are so many causes of what physicians call migraines. Understand that this is a catch all phrase akin to what is called fibromyalgia another term used when there is no obvious cause for the pain.
I speak from experience...Just this week I heard from a patient who flew in from Chicago. He had tinitus, a constant ringing in the ear. He had been to all the specialists, including a major specialist in tinitus. That doctor told him there is little if any correlation between TMD and tinitus and absolutely no correlation with hearing loss. This Monday he called to tell me that after treatment not only is his tinitus much less (still present) but his hearing 'has come back' . This is just a recent example of the trust we uquestioningly put trust in our physicians and rightly so. That trust however, should not preclude the need to explore.
My son is 10 and has had migrain headaches for over a year now. He is under the care of a Pediatric Neurologist and started taking topomax 1 1/2 months ago. It took about 4 1/2 weeks for the medicine to work. My only concern now is that he is getting dizzy and is tired. He says that at times he feels weird inside. So he will be seeing the doctor soon to discuss this and to see what we should do. He is happy that the headaches aren't as frequent, but at times the medicine makes him feel uncomfortable. He was getting headaches about 4 times a week, and in the last 2 weeks he has had 3. I am still concerned about the medicine, but am glad that he isn't always feeling sick. Good luck.....
Hi,
We have a list of pediatric Migraine specialists HERE. Dr. Eric Pearlman is in Savannah. You are quite lucky to have a pediatric specialist in your state. As you can see from the list there aren't too many of them!! For the full list click HERE.
Good luck.
hi i was reading your description and my daughter has the same symptoms. She is 6 and also mostly has them at night. however this school year she has had them much more frequent and almost weekly is in pain. I am also in atlanta, ga. We are going back to her neurologist who has diagnosed migraines but I am afraid to put her on topamax or anything really. Just wondered how your situation has been?? thanks
Hello,
We actually did try Topamax for several weeks and my daughter almost "cracked" up on this medication. There was basically no relief and a some terrible side effects. We could not hardly stand to be around her -- it was terrrible. I talked frequently with her Doctor (which is at Emory) and they decided to take her off the topamax. We had to allow time for that medicine to get out of her system, and her doctor ordered and EKG. The medicine they wanted to try her on can cause problems to your heart (if you already have an existing heart problem) There were no problems so we started Elavil (10 mg) and it helped some, but was still having migraines every day or two. We went up to 20mg and you could tell a pretty big difference. They upped it one more time to 25 mg daily of Elavil and she has been doing fantastic. She has been on the medicine since around Oct and has only maybe 5 or 6 true migraines since Dec. Today was our last day of school and she made straight A's with the exception of a B+ in Math. This has been a very hard school year for us, and at times I felt there would be no way she could finish the school year. I feel your pain and totally understand what you are going through. We have been doing alot of praying and are not giving up for a total miracle to take place in our daughters life. We know that through prayer and faith - all things are possible. If I can help in anyway I would be glad to try. Let me know how things go!
Hi,
Well, from what I've read everyone has been a parent so I decided I would comment. I am seventeen and I was diagnosed with hemiplegic migraines. I was put on topamax and gradually went up to 100mg during the school year. It got rid of my migraines but with it did come side effects. I have lost my appetite completley because nothing sounds appealing and I get extremely moody. My doctor says thats because it puts me in a depressed stage. It only lasts from about 11:20 to 12:00 the snappyness but then I turn into a complete blur where my eyes can't focus in on anything and I zone out.
I'm not saying Topamax is bad, it got rid of my migraines, but as a parent you have to realize what your child is going through and you have to work with them. I know its hard to completly change your diet, but if you put your child on this medicine, get what your kid wants to eat because then they will eat. I think taste buds just change greatly and you have to find them again. (I basically make homemade smoothies, eat greenbeans, fruit, peanut butter, and whatever else sounds good that day) I noticed when I had to up my dose this time when my mom was more understanding and was willing to get the food that sounded good to me, I began eating and my mood wasn't as bad. She helps me through the rough spots in the day, but for me I also know that at my age and my type of migraines there is no other type of medicine. It is totally up to you, but just be understanding of your child and make sure they can communicate what is going on with you.
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Hi Stacey,
My son started getting his migraines around age 7. He is now 10. We have tried Neurotin, Periactin, Topamax, Inderal and now Lyrica.
The topamax did affect his cognitive skills. It makes it very hard for him to concentrate. Most of the medicines say they cause dizziness, sleepiness and to not drive or operate machinery. So, it makes sense that it would make him walk around kinda drugged up.
However, Chuckie has hemiplegic migraines and therefore must be on a preventative. It's frustrating as a parent to have to make these decisions for your child.
Are you taking your child to a pediatric headache specialist? Not all doctors are headache specialists. Even neurologists aren't necessarily headache specialists. There is a link on this website.
You need to become as educated as you can about migraine disease so you can be an advocate for your child. This website is a great resource. Terry's book that is on this website, is another must.
Please join the forum, where you will be able to meet others that are going through the same thing and can share their experiences with you.
Do you have a 504 plan set up at your child's school? Have you met with the teachers and explained your situation? A lot of times I have to spend extra time with my son when his class is learning a new concept. His teachers have been wonderful in working with us.
Good luck with all of this. I will be thinking of you.
Yvonne-MigraineMom
Thank you for the note. We live in Georgia and are currently with a Pediatric Neurologist at Emory/Egleston of Atlanta. My daughters teachers have always been aware of the situation, but believe it or not she only has migraines between 8:00 p.m.-12:00 midnight. Her pattern is very predicatable....... She started having them around the age of probably 3 or 4 and they would come maybe once every 4
to 5 months and sometimes now they are once a week or once every 10 days. She never has them during the day, for that I feel very blessed because when she has them she has to be somewhere very dark and quiet. Thanks for your interest and concern.
Stacey Hicks