Hello from a Scared Father

[BensalemAngler]

Hello All

My name is Ron and my son Danny who is 3 has just recently been diagnosed with Complex-Partial Siezures. He has had Febrile Seizures since the age of 1, he is 3 now. On June 20th he had his first CP, June 28th 2nd, and today Aug 13 3rd.

All being different. He is on tegratal 2.5 ml 3X's a day Now 3.0 ml. I was not there for the first. I looked like this:

June 20 -- total staring, not responsive to anything, urinated on himself. Slept for 2 hours after.

June 28 -- slow moving not talking but looking at me, walking just being slow (20 seconds) then he threw up, starting singing but groggy. Slept for 2 hours.

August 13 -- Today -- Stared for 10-15 seconds would not talk slow moving looking at me following me with his eyes. Came out of it and laughed for 10 minutes. Did not answer any questions asked just laughed at any thing and everything. Did not sleep.

Called the doctor, only to have him tell me up his meds. He had an eeg one doctor said normal another said he had "misfirings" in the front left part of his brain.

Had a MRI to be found normal by 2 doctors.

Are these all CP's. I am feeling crazy, already scared to go anywhere do anything.

Just feeling lost...

 

[POSITIVEPERSON]

Hi I can only imagine how you must feel . I have epilpesy since I am 11 yrs old and I am now going on 52 yrs old. I was controlled for the first 24 yrs of my life and than fought to very hard to get control back. I myself am now using homeopathy and diet to control my szs. If you have any questions feel free to pm me.

Welcome to the boards.

Riva

 

[Bernard]

Hi Bensalem, welcome to the forum. :hello:

I'm sorry to hear about Danny's seizures. It can be very scary and frustrating to watch a loved one having seizures (my wife has epilepsy, I don't). When Danny is unresponsive, it is a state called post-ictal. He is not fully conscious at this time.

I'd highly recommend you look into the diets that are used to control seizures as they can have a strong impact on seizure activity and it is, IMO, way more preferable than stuffing growing kids with more and more drugs. Have a look at the chart in my signature for more info. I'd ask the doc(s) about the modified Atkins diet or Low Glycemic diet.

In the meantime, you can safely try and restrict Danny's consumption of simple sugars. It's a common theme running through all of the diets that have been studied for seizure control.

 

[BensalemAngler]

Thanks for your responses so far, I will check into the diet thing. I have been reading a lot about it today, a little too much. But I need to try something.

Simple Sugars, like apple and stuff? Danny eats them almost daily to have something in his stomach for his meds.

 

[Bernard]

Yes, although I'd be more concerned about processed sugars and white flours.

 

[Stacy]

Hi Ron,

My name is Stacy, and I'm Bernard's wife...the one with Epilepsy. I've pretty much gone through all the different seizures available, and all the meds. Having experienced this first hand, I can tell you that I feel dizzy sometimes after having a petite mal seizure. I have gone into many post-dictal seizures... a typical one would go as follows:

B : News of the day...
s: I become disinterested or know what he's saying. I'll hear everything, but get a glazed over look on my face.
B: Stacy! Are you with me?
S: (annoyed at the fact that I've had a seizure, and that Bern is going to worry/stress again.) YES Bernie! I'm here.
B: What did I just say?
S: (I heard every word, but can't repeat it, even though I can see it and feel it.) Sometimes I'll be able to repeat it). It's like I'm on autopilot. I'm not being dangerous, and I can respond physically if needed, but not complete cognative thinking.
B: (gets really upset that I can't repeat what he said and talk to him about it) Then proceedes to tell me how I've just had a seizure, and to watch my diet. What did I eat? Have I had any sugar? the usual "I'm on your case because I love you" speech.

Mostly I've noticed things like this after sugar, and white flour. I'm not talking apples here. I mean things like candy bars, cake, cookies, ice cream, fast food hamburgers (white bun). I've found that the more proteins I have and the less white flour, the better off I am. I limit my sugar (I make an effort) to 10g/ day. (that's not hard to pass up either). I eat plenty of protein and I've also noticed that the more often I eat, and the more (mild)exercise (and stress reduction), activities like yoga (getting a 3 year old to do that is going to be fun.) The fewer seizures you will see. I've also gone through many sets of grand mal seizures, but that's another story.

My suggestions:
1. Keep a journal of all activities, and foods, and reactions for 1 month. You should be able to see results and consequences in about a week. Try your normal food routine, and notice when Danny has problems. Write them down...
2. Then keep him out of the processed sugar, acidic fruits (my biggest problem), and white flours and rice (go with corn, wheat and brown rice). Write down the results. Notice if there is a reaction with corn, and wheat specifically. I'm still trying to figure out any problems with guar gum and MSG.
3. First thing in the mornings, you and Danny relax together. Stretch, & Breathe deeply. Have him lay on the floor and show him how.... Start at the belly button. Feel / watch your stomach expand. Breathe slowly in filling your lungs with air. After your lungs have expanded, breathe out slowly (in through the nose, out through the nose). Do this several times, having Danny put his fingers on his belly button to start. Move his hand slowly up the body as his lungs fill with air. Let his hand go all the way over his face and on top of his hair, squeezing out the bad stuff out the top.
4. Multi-vitamin with plenty of B in it, as well as some exercise daily.

On the foods, do one thing at a time, as too many will just make things very confusing. Please let us know if this helps. This is stuff from my own experience. Good luck.

 

[POSITIVEPERSON]

Stacy you forgot to advise Bensalemangular to give Danny , vit c and complex magnesium and b complex daily with multi vitamin. Tegretol depletes the body of these vitamins and its best to add them daily to his routine.

Riva

 

[Stacy]

Thank you Riva. You are 100% correct. I also forgot to mention the effects of sugar. Ron, you will notice in Danny (after a bunch of sugar), a very hyper and silly boy. Then the sugar wears off, and he will start having problems. It is after the sugar wears off that the seizures start. Good Luck.

 

[POSITIVEPERSON]

The other thing I forgot was I got annemia with tegretol . Watch out for that ,you can combat that organically with molasses. An adult would get 1 tablespoon, so I assume a child would get 1 teaspoon -2 teaspoons a day to fight the annemia.

Riva

 

[BensalemAngler]

Thank you so much for the additional information. Danny thankfully does not eat much sugary products. I was very hyper as a child so I never ate sugar, and has lost a taste for it. So there is not much sugar in our house.

I started a journal after the first one. No corrolations yet but I will have to wait and see.

So the laughing thing is a some what normal side effect of a sz?

Plus I am heading out today for some vits. Thanks again for all the info. It just feels nice to talk to others about it who are not doctors.

Ron

 

[Bernard]

So the laughing thing is a some what normal side effect of a sz?

Yes, it can be.

 

[brain]

Laughing is part of a Reflex seizure as known
as Gelastic seizures.

And :hello: and Sorry for the belated
welcome!

 

[Stacy]

Bernie use to tell me I would laugh for long periods of time when he would say something, even when it wasn't funny.

I also had this weird habbit of laughing at pain. Normal people cry or scream. I laughed. During labor with our first child.... I laughed. The doctor and nurses kept looking at Bern for answers and all he could tell them was, "she laughs at pain". The whole scene was quite amusing.

As a child my father told me I would never complain about getting hurt and that most of the time it was funny to me. Maybe this has a correlation. Hmmmm..

 

[Bernard]

Bernie use to tell me I would laugh for long periods of time when he would say something, even when it wasn't funny.

You still do it (laugh for 5-10 seconds in a post-ictal state) after having one of your infrequent jerks.

 

[execwife2002]

Can you talk a little more about the processed sugars and white flour. My 19 yr. old eats a lot of fast food and white flour. We try to get him to eat whole wheat grains but are only 60 % successful.
Marian

 

[brain]

You still do it (laugh for 5-10 seconds in a post-ictal state) after having one of your infrequent jerks.

(prays that my son doesn't read this posting!)

 

[Bernard]

Marian, there are 3 diets that have been studied as a means of seizure control - ketogenic, modified atkins and low glycemic (a version of the Sugar Busters diet). Each as shown to be effective at seizure control fo a significant portion of the test group(s). These diets can work in so called "intractable" cases that do not respond to drugs.

While the diets vary, a common denominator in all of them is a restriction on sugars and simple carbohydrates (white flour, white rice, etc.). Studies have also shown that aspartame (sugar substitute) and MSG (common food additive) can be seizure triggers.

 

[Gail]

As a mom of a 19 year old son with Grand Mal Ep., I know what it feels like to feel scared. And crazy. You're not alone, believe me! Even knowing that does not help sometimes. But...sometimes it does. You sound like you are a wonderful dad. Hang in there.

 

[RobinN]

Yes it is very scary. What has helped me is knowledge about the disorder. Sometimes far too many hours doing research, but I have learned much more that the medical community I have come in contact with knows.
I have also learned in another forum that Phenol Sensitivity can cause inappropriate laughter. Not connecting the two, but sometimes this knowledge is helpful in connecting the dots. Especially when we talk about diet related episodes.