Still Scared Father Update

[BensalemAngler]

Well it has been a while since I have wrote. It is hard for me to get on the computer at home. When I am not watching Danny (3 yr old) I just want to sleep.

Danny has had 3 more sz since we last talked. The doctors at both CHOP and ST. Chris are saying they are Focal. Am going to St. Chris got a second opinion at CHOP both were good, but I was hoping for something different.

Danny is on 5ml tegratal 3x's a day, which he is handling like a champ.

Last night's sz was a bit odd. He responded to me with head nods and his eyes following when I asked him questions, and he remembers everything. This is a first.

He started school and had one at school, teacher was shook and made a comment about 13 other students int he class. All I want her or the other teacher to do is look at him a bit more often.

In line put him closer to her, not shadow him or hover over him. Just call his name a bit more to make sure he responds.

I still have major issues with leaving him or my house. He is a good boy why must be suffer? Sorry had to say it. My head is shot though.

Though Chocolate Ice Cream seems to play a part. Had a Chocolate Milk Shake last night, Chocolate Ice Cream with the one second to last and Chocolate Ice Cream in the summer. His sugar intake is controlled. Wife and I do not consume much sugar at all. Who knows, I think I am fishing for reasons.

Hope you are all having a good day.

 

[TeeTees]

Hi BensalemAnger,

Sorry to hear about your little Danny. It really does seem unfair, and you'll tend to find yourself asking the question "why MY boy ?" quite often too.

I've spent 38 years looking for a link between my seizures and maybe what I'm doing, or what I'm eating at the time.....and believe me, I can't find anything.

They really do have a life off their own at times, and it really can be difficult to comprehend, but time is a great healer and you'll find that you will simply cope with it after a while.

I'm sure you have done already, but are the Teacher's aware off Danny's problems ? It's always good to give Teacher's a good insight into what can cause the problems, and what they need to do should a seizure occur.

Reading the last part of your thread, and reading what I've been told in the past, I was wondering if the Dairy content of Danny's diet could be one off the issues ?

Anyway, I shalln't go on. I hope all goes well for Danny - you never know, this could just be a short period of having seizures which He'll get over as he grows older. <finger's crossed> :tup:

 

[Bernard]

I can feel your anxiety.

Sounds like the Tegretol is having some effect. It can take several weeks before the level of AEDs stabilize in the blood stream and really start working.

Stacy has had many dramatic changes in her seizure patterns over the years and some of them coincided with changes in her treatment regimen (the other changes were related to pregnancies).

Chocolate has caffeine, so that could be another factor over and above the sugar. Maybe you could experiment with Carob ice cream from a health food store instead of chocolate?

Caffeine and Theobromine Levels in Cocoa and Carob Products

 

[BensalemAngler]

Caffeine. Never thought of that. That is the only caffeine he gets. No Soda or anyhting.

Thanks

 

[RobinN]

Hi, I don't believe we have met
Can I take it that your name is Ben?

maybe look at the ingredients of the ice cream. What else is on the label?
I am looking at this for my daughter who is 15 and began having seizures a year ago. At first I thought it was just hormones, and now I am beginning to believe it might be the many names for MSG. It can change the endocrine system and cause hormonal irregularities. I am going to give it a shot for a while.

Give your little guy a hug, I know how hard it is to watch your child go through this.
I hope we can offer each other some support.

 

[BensalemAngler]

Hi Robin nice to meet you, my name is Ron and I live in Bensalem.

 

[RobinN]

Ahhhh.... sorry about that.... now where is Bensalem?
I live in a town called San Marino, but you probably know the area better for Pasadena, home of the Rose Bowl... and a few other things.