Jim Belcher

[Jim Belcher]

Hello there. Our 3 year old son was diagnosed with epilepsy 5 months ago after he suddenly started having seizures (3-4 a day) Up until then, we didn’t notice anything except maybe some times when he “zoned out”. His seizures have been classified as “complex partial seizures”. Mainly in his neck/face region.
He was originally prescribed Keppra. We immediately noticed a decrease in seizures (from several a day to 1 a day) and then eventually to one only every 2 or 3 weeks. It seemed that he would have them after eating sugar products or when he was extremely tired or dehydrated. We also went to a gluten free diet and that seemed to help some too.
Everything was pretty good up until about 1 week ago. He all of a sudden started having 4-8 seizures a day. We took him in for an EEG and they were able to observe some of the seizures, but the doctor basically wants to prescribe another medicine. He also felt we only had about a 15% - 20% chance of finding the right medicine to stop the breakthrough seizures. He is also now having a mixture of complex partial seizures and simple partial seizures.
Due to our low chances of finding the right med, I feel we need to look at some alternative things like maybe a stricert diet – no dairy, no sugar, no dye, etc and also do a complete analysis of his micro nutrients, food intolerances/allergies, levels of iron, magnesium, copper, etc. As I have seen from various doctors’ logs that some of these things can be a trigger…
Does anyone have any helpful advice or have you gone through a similar situation with your child? We are trying to find someone to model ourselves after and are certainly open to any advice we can receive. Either a parent we could talk to or a referral to a doctor/nutritionist who specializes in these things.
To top things off, he was recently diagnosed with Autism too. So we are gearing up to fight that battle as well. We are now trying to figure out where to start with that.
Thank you ,

Jim Belcher

 

[Katie]

Hi Jim. I'm sorry to hear the news. As far as Autism goes, I would highly recommend looking into Temple Grandin's books and research papers. Even if they're memoirs, they give an enormous insight into what's going on in your son's head.

 

[Jim Belcher]

Katie, thanks for the advice. I will check out those books

 

[jackier]

Jim, welcome to CWE & I'm sorry for your little boy. There is a wealth of info on this site; check out the sub-forum called "Nursery" and also in the "Kitchen" -sub forum there is a running thread entitled "Sunshine & Seizures". You will find helpful info there.
There are diets (KETOGENIC, GARD & MADD) discussed there and vitamins, like B6, magnesium (mineral) I wish you tons of luck with your little boy!

 

[Shawnna]

Hi Jim,

My heart aches for you - I feel like I was right where you are many, many years ago.

Both of my sons have Epilepsy. My oldest has been lucky in that the first medication tried (Depakote) worked. My second son has had a much rougher time of it. His seizures started out as absence seizures at age 7 where he would basically zone out and be non-responsive. Then in the 7th grade he had his first tonic clonic (grand mal) seizure. He would have a seizure about once every 4-6 weeks. It took him five years to get through high school. He did have a period of 3 years where he was seizure free (he was on Topamax and Lamictal) but the toll this has taken on his self esteem and anxiety is tremendous. He's 26 years old now and has been through so much. Eventually his shoulders started dislocating with each seizure. He did work for a few years as a cart person at one of our retail stores near home. His shoulders were so damaged by the dislocations with every seizure that they eventually would dislocate when he sneezed so he had to stop working. Thank G*d for the time he was working because that qualified him for Social Security Disability when his shoulders started routinely dislocating. Having his own money gives him some sense of being an adult (he still lives with me).

Anyway...... to make a long story not so long......

We found a great neurologist that has been treating him consistently for years. He's on four medications now (Keppra, Lamictal, Vimpat and Depakote) and has been seizure free for nine months! Hooray! We've had shoulder repair surgery on his left shoulder last October and next April we will get the other shoulder fixed (assuming he's seizure free for six months).

My advise to you is:

• First and foremost, love him unconditionally. Life will be a challenge and he'll need the support of his family when things get really tough.
• Instill good eating habits early. It will be hard to get him to change his eating habits as he grows older so if you can do this now, all the better.
• Find a neurologist and primary care physician for him that you trust and you know will care about your son's unique and very personal situation. No two Epilepsy suffering individuals are alike and the care he requires will be unique to him.
• Find a support group for you (your son's caregivers). It's a tough situation that is ongoing and ever changing as your son grows and his metabolism changes how his body reacts to the medications he'll need. Take care of YOU too!
• Have a curious mind. Do your own research and demand your health care providers listen to you. You know your son best and you must be his advocate as you navigate the health care system.
• Recognize that Epilepsy research and education is always occurring and stay up with what's happening. CURE (Citizens United for Epilepsy Research) is a wonderful organization to become involved with. Google their website (this forum won't let me post links - darn it).
• Don't be over protective. It's hard to avoid but allowing your son to grow into managing his own care needs will be very, very important. Make sure he knows what his unique seizure triggers are and give him the tools he needs so he can manage his triggers.

I think that about covers it. Just know that your son's condition is unique to him; his seizure triggers will be important to figure out (lack of sleep, stress, and high sugar content food are my sons triggers). Teach him this and stress the importance of his medication regime.

Best wishes to you and your family.

(((hugs)))

 

[jyearta]

Hi Jim,

I don't have children, I'm the one with Epilepsy.

You have already been given so great advise, I really can't add anymore.

I did want to say that I praying for you and your son.