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2 YEAR OLD SON I NEED HELP

Tue, 07/12/2005 - 17:09

HELLO I HAVE A 2 YEAR OLD SON THATS HAS DX (INFANTILE SPASMS ) MONOCLOYIC SEIZURES AND I NEED SOME INFORMATION ON MEDS AND VNS. MY SON BJ HAS HAD SEIZURES FOR 8 MONTHS AND HE IS ON KEPPRA, KLONIAPEN, AND ZONOGRAN. HE WAS ON TOPAMAX BUT WOULDN'T EAT AND GOT BACK DOWN IN A SIZE 6 MONTHS.  THE DRS WANT TO CHANGE THE ZONOGRAN TO DAPOKOTE AND IF HE DOESN'T GET BETTER THEY WANT TO DO THE VNS. HE HAS MONOCLOYIC SEIZURES 5 XS A DAY WITH 5 TO 25 CLUSTERS AND ITS NOT BETTER WITH MEDS ITS GETTING WORSE HE HAS HAD 2 SEIZURES THIS WEEK AND IM NOT SURE WHAT KIND?  HE WILL NOT RESPONED TO ME AND ACTS LIKE HE IS  OUT OF IT FOR ABOUT 20 MINS. HE GO'S LIMB (LIFE  LESS) I HAVE TO GIVE DIASTAT IF ANYONE CAN HELP PLEASE DO. MY SONS DX HE CAN WALK AND SAY ABOUT 30 TO 40 WORDS HE'LL BE 3 IN NOV.  THANKS BJ'S MOM SHIRLEY

Comments

RE: 2 YEAR OLD SON I NEED HELP

Submitted by ladysteele on Tue, 2005-07-12 - 09:33

When our son was diagnosed almost 2 years ago I started looking at the medications that would be used and was frightened by the fact that he could have more or the seizures could change depending on how he reacted to the meds.  We did try Depakote but he was allergic to it.  We could see where things were going at that time and didn't really want to put him through the paces of one med after another.  That's when we decided on an alternative approach.  The supplements my son is on will offer them for free for any medically fragile child.  It sounds like my son has similar seizures as your son just not quite so many.  Fortunately my son is doing better.  My point is don't think meds are your only option.

Ladysteele

When our son was diagnosed almost 2 years ago I started looking at the medications that would be used and was frightened by the fact that he could have more or the seizures could change depending on how he reacted to the meds.  We did try Depakote but he was allergic to it.  We could see where things were going at that time and didn't really want to put him through the paces of one med after another.  That's when we decided on an alternative approach.  The supplements my son is on will offer them for free for any medically fragile child.  It sounds like my son has similar seizures as your son just not quite so many.  Fortunately my son is doing better.  My point is don't think meds are your only option.

Ladysteele

RE: 2 YEAR OLD SON I NEED HELP

Submitted by grez-monkey on Tue, 2005-07-12 - 17:09

Shirley,

I want to first tell you right off that I'm not a doctor or medical professional, I'm a person with epilepsy (37 years old next month). In my own personal opinion, I'd like to suggest that you put a hold on the VNS. Learn the pros and cons about it from people who have tried the VNS and what they've experienced. Especially from other parents who's children have the VNS themselves.

Your son's been experiencing spasms for 8 months already and currently on 3 separate medications, that's already alot of medication in that little guy. Did the doctor start out with just ONE medication to begin with?

What you need to look into is called the Ketogenic Diet. It is mostly useful for children, but some adults have worked with it too. Here's one website through epilepsy.com's collection of information, about the ketogenic diet. www.epilepsy.com/epilepsy/ketogenic_diet.html. Also, there's one community support group with people's stories and experiences with the VNS. It's titled the VNS Message Board and located at http://s4.invisionfree.com/VNS_Message_Board/index.php?act=idx

The people on this community forum are on the family and patient's side of having to deal with epilepsy, not the doctor's side.

Wish you the best.

Bruce J

Shirley,

I want to first tell you right off that I'm not a doctor or medical professional, I'm a person with epilepsy (37 years old next month). In my own personal opinion, I'd like to suggest that you put a hold on the VNS. Learn the pros and cons about it from people who have tried the VNS and what they've experienced. Especially from other parents who's children have the VNS themselves.

Your son's been experiencing spasms for 8 months already and currently on 3 separate medications, that's already alot of medication in that little guy. Did the doctor start out with just ONE medication to begin with?

What you need to look into is called the Ketogenic Diet. It is mostly useful for children, but some adults have worked with it too. Here's one website through epilepsy.com's collection of information, about the ketogenic diet. www.epilepsy.com/epilepsy/ketogenic_diet.html. Also, there's one community support group with people's stories and experiences with the VNS. It's titled the VNS Message Board and located at http://s4.invisionfree.com/VNS_Message_Board/index.php?act=idx

The people on this community forum are on the family and patient's side of having to deal with epilepsy, not the doctor's side.

Wish you the best.

Bruce J

RE: 2 YEAR OLD SON I NEED HELP

Submitted by angel_lts on Wed, 2005-07-13 - 07:49

Shirley, There are many options for him, Neurofeedback, the ketogenic diet, vitamins magnesium, calcium, b vit, omega three fatty acids.

Please check out the group. I have a member in my support group that has been cured by b complex check out his story in files. I have used omega three fatty acids and taken away 234 auras and nine seizures a month.  My story is in files also.

I personally follow a low carb, high fat diet, for I have been on the ketogenic and works very well for me. I did it as an adult so my brain is fully developed so it was hard to become seizure free. But got rid of many seizures at the time I was on the diet.

Lisa

http://health.groups.yahoo.com/group/EpilepsyApproach/

Shirley, There are many options for him, Neurofeedback, the ketogenic diet, vitamins magnesium, calcium, b vit, omega three fatty acids.

Please check out the group. I have a member in my support group that has been cured by b complex check out his story in files. I have used omega three fatty acids and taken away 234 auras and nine seizures a month.  My story is in files also.

I personally follow a low carb, high fat diet, for I have been on the ketogenic and works very well for me. I did it as an adult so my brain is fully developed so it was hard to become seizure free. But got rid of many seizures at the time I was on the diet.

Lisa

http://health.groups.yahoo.com/group/EpilepsyApproach/

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