New mom

[tag415]

Hello,
I'am new to this,and a mom who is frustrated.My son who is 7 years old has epilepsy.In Nov.2006 he had 3 seizures in a 1/2 hr.I called 911 and when they came they told me it was a febrile seizure (high fever).When we got to the hospital he did not wake up so they ambulance him down to a childrens hospital where he woke the following morning.The mri they did fould that he has a chiari 1 malformation,(Which I just don't know enough about,and doctors just say we will do a yearly mri to make sure it don't grow)but they say that is not causing the seizures.Has anyone ever heard of chiari malformation?He also started with migranes 2 weeks ago and gave more meds for that too..I guess I'am frustrasted because all they do is but him on tons of meds.He takes 6 topamax a day a 2 tsp. of trileptal a day.It is controling him from having grand mals but like yesterday he had a mini seizure where he talks about things that don't make sense and than stares off into space and than goes to sleep for 2 to 3 hours after.I sometimes wonder if getting a second opinion would be a smart choice or do you just keep taking the medication and wait.Just wondering if anyone has any suggestions.
Thanks
Tricia

 

[Stacy]

Never give up searching for a cure. You may have to keep him on the meds until you find something else, but do not stop looking. I'm pretty sure the meds are no fun for him. I'm also growing more and more confident that everyone that has epilepsy, has a different trigger. Mine are hormones and stress. I do not know what is helping, as there are many variables in the equation. I do neurofeedback (as does my 7 year old son), yoga, take a regime of daily vitamins and supplements, 400mg Dilantin / Day, exercise, and try and keep my electrolytes up.

My suggestion; Track EVERYTHING your boy does for about a month.... what time he wakes up, what he eats, his moods, his activities, what it looks like when he uses the rest room, EVERYTHING. This will give you the start you need to get your boy on the right track.

I know it's hard, and I feel your pain. You are in the right place. Everyone here is compasstionate and knowledgable. I'm sure you'll be able to find good information here.

 

[Bernard]

Hi Tricia, welcome to the forum. :hello:

Sorry to hear about your son's seizures. Everyone has evaluate that medication control/side effect equation for themselves.

I'd suggest looking into some supplements like ionic magnesium for the migraines (just so happens it may be beneficial for seizures as well).

There are alternatives to the drugs (diets, neurobehavioral therapy, EEG neurofeedback - see chart in my signature), but neuros won't use them as a frontline treatment. Their goal is to stop the seizure activity as quickly as possible.

 

[skillefer]

Hi Tricia! Welcome to the forum. I can't really add anything to Stacy and Bernard's posts, other than try to keep calm. It will help your son.

 

[RobinN]

Hi Tricia - my daughter has tonic clonic seizures. She has 0-6 a month. I am working to get the number down to 0 each month. The side effects of the meds were not acceptable to me. Her quality of life each day was diminishing and she was wondering what the use was. So now the challenge is to get her threshold back up so that she is strong and able to channel the seizure activity into another direction.

We use magnesium, and quite a few other vitamins and minerals. I have her on a healthy nutritional plan, and I do see a connection from time to time when she cheats.

I hope that you find some other therapies to heal your little guy and get him off those darn meds.

 

[Zoe]

Welcome to our group! There is a lot of information and support available to you. I have a spinal cord disorder that is often found with Chiari malformations, though I don't have a Chiari. There is one hospital in the US devoted to treating your son's condition. You can get more information and help from these links:
http://www.conquerchiari.org/index.htm

The World Arnold Chiari Malformation AssociationA comprehensive site dealing with Arnold Chiari Malformation, in adults and teens.
http://www.pressenter.com/~wacma/


If at all possible, look to the groups and find specialists who are very familiar with your son's disorder. They may have a much better understanding of how to best treat him and how to manage his seizures.

Do a goggle search on Chiari Malformation and you will find other groups and links to help you.

Hello,
I'am new to this,and a mom who is frustrated.My son who is 7 years old has epilepsy.In Nov.2006 he had 3 seizures in a 1/2 hr.I called 911 and when they came they told me it was a febrile seizure (high fever).When we got to the hospital he did not wake up so they ambulance him down to a childrens hospital where he woke the following morning.The mri they did fould that he has a chiari 1 malformation,(Which I just don't know enough about,and doctors just say we will do a yearly mri to make sure it don't grow)but they say that is not causing the seizures.Has anyone ever heard of chiari malformation?He also started with migranes 2 weeks ago and gave more meds for that too..I guess I'am frustrasted because all they do is but him on tons of meds.He takes 6 topamax a day a 2 tsp. of trileptal a day.It is controling him from having grand mals but like yesterday he had a mini seizure where he talks about things that don't make sense and than stares off into space and than goes to sleep for 2 to 3 hours after.I sometimes wonder if getting a second opinion would be a smart choice or do you just keep taking the medication and wait.Just wondering if anyone has any suggestions.
Thanks
Tricia

 

[Star*gazer]

I am so sorry that you son is having to go through this!

The best thing that you can do is get informed, so when he does have doc app you know what they are talking about, so you can make the best decision for him. ((((((HUGS))))))))))))))))