My Adult Son

[Praline]

For nine years my son has had severe abdominal pain, vomiting and the runs (no constipation) at this time the pain and attacks were diagnosed (after all the tests) as "stress". Within one month he had lost 60 pounds. Currently the vomiting is reduced and he has resumed normal bowel movements but the attacks have progressed.. He has been subjected to all the required "normal" testing procedures. Doctors have been unable to find anything so they have tagged him as having IBS, even though he does not have all the IBS symptoms.
First he gets this - I'll call it a wave over him (aura?), then he developes abdominal pain which becomes so severe all he can do is lay on the bed in the dark. During this time he loses focus on his surroundings and (for want of a better term) goes into a different world. These sessions can last up to three days. He is exhausted afterward, tired an listless. Every time he eats the pain returns, it doesn't matter what he eats. Dizziness is now beginning to occur.

His pain has become my agony, even though he is now 21 we are losing hope for him to live a "normal" life. I have researched abdominal epilepsy and discovered that all of his symptoms fit directly to his - how in do we find someone to listen and test him for this.

[Ruth]

Hi Praline,
Welcome to the forum. This forum was made by Bernard, out of love for his wife Stacy.

Stress is a trigger for seizures. I just heard a term in the forum today that I had not heard before. It is called 'reflux' seizures. Have the doctors put him on any medication at all?

When I have vomiting and diarrhea, I take electrolytes. I use the brand name Pedialyte. That will stop that.

If your son has had EEG testing, seizures only show up if he is having a seizure during the test. A V EEG will show up what is wrong with your son. Take a journal and write down what he eats during a meal. If he does not have a seizure after that meal, then start making a list of good foods. If he has a seizure after a meal, then delete those foods from his meals.

Do not lose hope. I have always had a positive attitude over the last 60 years of epilepsy. My doctors lost hope for me, when I refused to.

[Dutch mom]

Welcome Praline (nice French name ), welcome on CWE and in the nursery where we, moms and dads of kids with E, can meet eachother. My son (age 10) has the Lennox Gastaut syndrome and is on the ketogenic diet for over 5 years now.

I was wondering: did your son ever think about trying neurofeedback? Maybe this may help to control his seizures and his pain.

And did he try any (epilepsy or food intolerance related) diets?

[epileric]

I have to say that as much as I hate having epilepsy I am happy that I was quickly diagnosed.

Have you had your son checked for specific food allergies or sensitivities? Do you keep a diary of when these things occur, what/when he eats, when he moves his bowels etc? A pattern might begin to emerge if you do.

[Nakamova]

Hi Praline and welcome!

You need to get a referral to a neurologist, if you haven't already. Explain to the neurologist why you think abdominal epilepsy is what's going on with your son. A responsible neurologist/epileptologist should be able to help. Keep looking until you find one who can help.

[Loudmouth]

These also sound very similar to the symptoms of coeliac disease (celiac in US) which is very frequently mis-diagnosed as IBS to start with. My 7 yr old son was diagnosed in April, and has flourished since being on a Gluten-Free(GF) diet. No more crippling stomach pains, no more constipation or diarrohea, and he's even grown 3 inches in 6 months (kind of unlikely a 21 yr old would do that though lol). It might be worth eliminating gluten fron his diet for a while to see if it makes a difference.

[Praline]

Thanks Nakamova for thinking of a neurologist. Being in Ontario it will have to be through a referral. Lets hope our GP will give us one.

To Loudmouth - your thoughts have already been tried. Coeliac disease was one of the many things we have come up with. We remove gluten from his diet for three months and there was no change. I really happy that you and your son have discovered your problem. I know the agony you must have endured.

[Praline]

Currently the only thing my son is eating are fruit and veggies. The only thing he is drinking is water. Are any of these to be eliminated?

[Nakamova]

It sounds like your son is essentially on a vegan diet. He may be missing out on certain nutrients, listed below. Many of them have neuroprotective qualities, and are important for overall health:

-- Vitamin B12: A deficiency is linked neurologist-degenerative disorders.
-- Calcium: Important for brain and bone health.
-- Vitamin D: Important in maintaining normal functioning of the nervous system. Especially important to supplement woth D in the northern latitudes. Doctors are now recommending at least 2000 IU a day.
-- Iodine: Deficiency is been linked to hypothyroidism.,
-- Omega 3 Fatty Acids: important for brain and behavioral functions as well as essential to prevent diseases like heart disease, arthritis and cancer.
-- Iron: Iron absorption can be inhibited due to the fiber and oxalates in a vegan diet, and anemia can result.

If your son already takes these supplements/nutrients, he should make sure to take them in gelcaps or liquid form, which are easier on the stomach.

[vapour]

It could be irritable bowel disease...

Like...Colitis ?

I dont know much about abdominal epilepsy but i trust the people in this forum if they have directed you to a Neurologist try and get one.. also perhaps an internal specialist.

Hope he gets better, it really sounds miserable.

[Ruth]

Hi, Praline,
Have you been to a nutritnonist? You need an internal specialist and a neurologist, as well. You and your son have really been through a lot. I am glad you came here.

My son had IBS and epilepsy. He was living on his own, so I do not know how it was treated. Probably medicine, since he had all ready been diagnosed with epilepsy.

[Meetz1064]

one thing to consider, though in regards to what was said about celiac disease. Keeping him on the celiac diet for 3 months is all well and good, but it takes AT LEAST 8 MONTHS for gluten to clear one's system, SO BEING ON THE GLUTEN FREE/CELIAC DIET MUST BE MAINTAINED FOR AT LEAST 9 MONTHS OR MORE to determine if it's working or not.

Not easy, that's true. But definitely worth the effort.......

[Ruth]

Meetz, I have noticed that there are two different diets in the Social Groups. It is the LGIT and the GARD diet. Are one of these the gluten free diet?

[Meetz1064]

the GARD diet is very similar to the celiac diet. The celiac diet tends to be a bit more restrictive though, at least from what I've found, being on it myself....

[Ruth]

Maybe Prailine can join the GARD diet in the Social Groups. Do you think that will help? I do not know much about these diets. My diet is the one for Diabetes.

[Meetz1064]

that would be a great idea actually. Also, a good start for her would be to go look at the creator of the GARD diet's home page (Dogtor J) --and yes, I know he's a vet ....he originally created the diet for epileptic dogs-- Here's the link:
DOGTORJ.COM

[PhylisFeinerJohnson]

Dear Praline,

Welcome to the board. I'm sure you'll find much support, help and resources in our community. I did some research and came up with Dr. Marika J. Hohol, St. Michael's Hospital, Toronto, Ontario as a leading Neurologist/Epileptologist in your area. Hope this helps.

[Ruth]

Hi Praline, there is also this link you might want to try:

http://www.coping-with-epilepsy.com/...ive-treatments/

[RobinN]

Welcome Praline - my son also has stomach distress following eating, along with bleeding. It is eased when he eliminates gluten foods.

However, you son being on just fruit and veggies, you might consider looking into enzymes. They help to break down the food so that the body can absorb the nutrients.
I have read on other neurologist sites that this is extremely helpful, when the intestinal tract is so damaged. There are so many connections between intestinal distress and neurologist issues. I found the info I was seeking on many Autistic group sites. We are dealing with similar issues many times. The symptoms just are occasionally different. Be open minded and know that there are many people working with similar problems.

Here is one site that you might get some relief from:
http://stankurtz.com/biomedical/diet...c-illness.html

[Loudmouth]

LOL Meetz, did you read my mind? It took about 4 months to see ANY improvement with my son being on a GF diet, and the more time that passes, the better he gets. His nutritionist at the hospital said that after the first year, they will re-assess him because it takes that long for the residual gluten to leave his system and his digestive system to repair itself. I have seen such a difference. Having said that though, I do think that a neurologist needs to be consulted, even if all it does is rule OUT abdominal epilepsy.