hello , new arrival.....

[stuart]

hello, my name is stuart and my son is 6 years old and has epilepsy and was diagnosed at the age of 4 months. His name is samuel and he has 'eating' reflex epilepsy , absence spells and tonic clonic epilepsy( hope I got all that right) . I think that his symptoms are quite unique but thats why I'm here I guess to learn , so please feel free to give me any advice you can and if anyone has the same condition i would love to hear from you, thanks

[Ruth]

Hi stuart,
Welcome to the forum. This forum was made by Bernard out of his love for his wife Stacy. Glad to have you here. I would like to know your son's name.

My epilepsy started when I was 6 years old. I had absence spells back then. That was 60 years ago.

Do they know the cause of his epilepsy? What is 'eating' reflex epilepsy?

What medicines are your son on?

You can find out if anyone has the same condition by going to the "nursery room" and posting your story. Bernard named that room for parents with children to get together. I would recommend you do that. Stay here and you will make a lot of friends as well.

[Rae1889]

Hi there stuart! Welcome to CWE
I am not familiar wirh eating reflux E, but I will stick around to answer any other questons that may come up!

Rae

[stuart]

I have read about reflex epilepsy on the internet. It is when something eg light, touch, eating etc triggers a seizure. Samuel has three different types of 'seizures' , the first is triggered when he eats something and when he drinks cold liquids . The second is when he has 'blank spells' , absences , and the third is a seizure with convulsions and tensioning of his limbs , these tend to occur at night .

He is currently on epillim (sodium valporate), keppra and diazapam( to interupt the 'bad' seizures.

As I said before i'm new so i have no idea what other people have experienced but I cannot help think that his condition is relatively unique....?

[Rae1889]

Well, I have seizures in reaction to lights and sound. and I am on Lamictal (lamotrgine).

I watched an episode of mystery diagnoses, and it was this boy who had a seizure when he ate or drank cold liquids. The results on that episode was that there was a berve to close to the surface at the back of his throat that when food hit it, or it was cold from liquid or ice or popsicles, it sent a signal to his brain as distress and he started to seize.

check that out.

[Nakamova]

Hi Stuart, and welcome to CWE!

It's probably not easy with a 6-year old, but if you can, you should try and keep a journal of things in your son's life that might be seizure triggers. You've isolated a few already -- related to eating -- but there may be more, or something underlying the eating like allergies or nutritional imbalances. It's good to keep track of diet and sleep habits, activities and stressors (including things like fluorescent lights or car rides), and then see if any of them seem to be connected to your son's seizures.

Some folks here have had success using special diets and/or neurofeedback to control or reduce seizures. You can search for threads with information about those topics, to get a sense of what's involved.

Best,
Nakamova

[Meetz1064]

also consider that he is ALLERGIC to certain foods, and that may be the cause of his reflex E. Perhaps by keeping an E journal, and tracking his food intake, you might be able to figure out his triggers....Usually when you keep an E journal, a pattern shows up, and it helps the doctor IMMENSELY.....

[Ruth]

Hi Stuart, thank you for explaing reflex epilepsy to me. It might just be certain foods. It is important for you to keep a journal. That way, you can keep track of what foods cause the seizures. If it is only certain foods, you delete them from his diet.

[Dutch mom]

Hi Stuart, welcome to CWE!

My 10-year old son started out with seizures (myoclonics) at age 1,5
Since then he has had all types of seizures, including absences, tonic clonics and tonic stiff cramps triggered by eating. We've had complex partials and atonics as well.
His seizure types and pattern have changed periodically (few months, a year.) He was diagnosed with Lennox Gastaut syndrome at age 3. He has used many meds including valporate and keppra. We use clonazepam to interupt the bad ones (tonic clonic's lasting > 5 minutes and repeating seizures/clusters.)
We've started the ketogenic diet at age 5 which has reduced his seizures and improved his EEG. Meds didn't help at all, we've tried 8 anti-epileptic drugs and 2 benzo's in different combinations. He is med free for > 4 years now. We only use clonazepam incidently when seizures break through (which happens when ketosis is not high enough and when he's ill.)

[danjor]

Hi stuart! My name is Jordan! Welcome to CWE! I can only imagine what its like to take care of a young child with epilepsy. I applaud you. As everyone else is saying. Keeping a seizure journal is an excellent tool. You are probably going to be one of the few people that sees him have a seizure. That's one of the reasons things get misdiagnosed. Take note of what they look like, how long they last and even what he ate, since there seems to be a connection. You are doing a great job and welcome to the forums again!

[BuckeyeFan]

Welcome Stuart

[Praline]

Hi Stuart

your message really startled me. My son has been suffering from symptoms extremely similar to yours. He kept it hidden from me for a long time and it wasnt until he lost sixty pounds in one month did I finally realize that there was a serious problem. It was approx. eight years ago that the weight loss occurred (he is now 21), however he tells me that his pain has been ongoing for much longer. We have had just about every test, stomach scope, barium, blood tests and even stress evaluation (all negative). I am currently trying to convince my GP to send him to a neurologist - living in Ontario it's a tough fight - your GP decides not you. Anyway - I digress -I know your son is younger then mine but believe me when I tell you that I understand how you are feeling. I am still fight to get a diagnoses, your the first person to explain my sons agony to a T. Thank you from the heart. Your not alone.

[Ruth]

Hi Praline,

In a lot of insurace companies in the United States, it is the GP who decides. We are at the mercy of insurance companies. I live in California. There is insurance in California where you can pick your own specialist. It is called PPO Insurance. It is very costly and your doctor decides how much you pay. We cannot afford that.

It sounds like your son also needs a nutritionist.