Reply Hey Mom! Learn more about the Gerber Life Insurance Grow-Up Plan!
 
Thread Tools Display Modes
Old 10-24-2008, 03:00 PM   #1
mrsmccullen07's Avatar
mrsmccullen07
Registered Users
seller
 
Join Date: Dec 2007
Location: North Carolina
Posts: 2,541
Anyone have experience with a infant/toddler on tegretol or keppra

My son is 14 months old and on keppra (3.5mL 2xday) and tegretol (6.5 mL 3xday) and they keep wanting to increase the tegretol everytime we go up on dosage his seizures change (now he has apnea during seizures when before he just shook sp? ) ... he has been sick for one month now and i read that keppra lowered the immune system he also has constant diarrehea (8-10 diapers a day) I am just wondering how many mommas know about these meds ??

Advertisement

__________________

mrsmccullen07 is offline   Reply With Quote
Old 10-24-2008, 03:06 PM   #2
togg_mama
Registered Users
seller
 
Join Date: Jul 2006
Posts: 5,821
My Mood:
Re: Anyone have experience with a infant/toddler on tegretol or keppra

Keppra made my DD absolutely insane (screaming within five minutes of dosing) so we weren't on it long enough to know if it worked or not.

Have you talked to your doc about switching meds?

Tegratol... it seems like someone else was talking about that med a few months ago. They had to keep going up on it too with minimal progress.
togg_mama is offline   Reply With Quote
Old 10-24-2008, 03:11 PM   #3
MommaBunny
10% of Profits Donated to Wildlife
seller
 
Join Date: Nov 2007
Posts: 2,055
My Mood:
Re: Anyone have experience with a infant/toddler on tegretol or keppra

...I don't know if my opinion counts since it's not my LO I'm talking about, but I do have direct experience with Tegretol, and there's no drug that terrifies me more. When I was five, I was diagnosed with bipolar disorder (which they later determined was a misdiagnosis; I was being abused and acting like an abused child, but that's an entirely different story)... They put me on Tegretol to treat my supposed psychosis. It almost killed me, and I remember it all very vividly. I was horrifically nauseated, sick, and dizzy; I could hardly stand up and couldn't hold my pencil in school and was unable to control my bowels and bladder. This went on for several weeks before they realized that, not only were the visible side effects AWFUL, but it was also destroying my heart because of palpitations. I can't hear or read the word Tegretol without panicking because it was all so traumatizing.

I encountered it again as an adult. My DH has severe epilepsy resulting from head trauma, and he took Tegretol at one point. He acted really weird for a few weeks and had lots of spells of narcolepsy, and was constantly dizzy and disoriented. He had a heart attack during his third week taking it (and survived, thank God!)... But that totally solidified my hatred of Tegretol.

I know that your LO's situation is a bit different than both mine and my DH's, and I know that some people handle it well, but I personally have had such negative experiences with it that my knee-jerk reaction is to suggest that you avoid it at all cost. But this is based on personal experience, not medical expertise.
__________________
[CENTER]Herbalist AP WAH-Mama to my ADORED Daughter, 4/2/08 . Married to my Best Friend! [B]
MommaBunny is offline   Reply With Quote
Old 10-24-2008, 03:49 PM   #4
mrsmccullen07's Avatar
mrsmccullen07
Registered Users
seller
 
Join Date: Dec 2007
Location: North Carolina
Posts: 2,541
Re: Anyone have experience with a infant/toddler on tegretol or keppra

Thank you ladies for your input . We have been on phenobarbatol , trileptal , keppra and tegretol what other meds do you know about that we could look into . everytime we increase the dose we notice horrible changes in our son .. he is all the time throwing up , passing out , diarrehea , seizures , sick .. uggh i really wish he could talk and tell me what's wrong
__________________

mrsmccullen07 is offline   Reply With Quote
Old 10-24-2008, 04:56 PM   #5
emilykaysmommy
Registered Users
seller
 
Join Date: Jul 2007
Posts: 775
Re: Anyone have experience with a infant/toddler on tegretol or keppra

No experience with those meds but couldn't read and not offer

My daughter has been having weird seizures off and on for over a year now and her neurologist is just starting to consider meds... and I also wish my DD could tell us what is going on!

Again, hang in there
__________________
Megan: wife to Desmond (6.25.05), mama to Emily Kay (12.2.06) and Zane Alexander (9.13.10)
emilykaysmommy is offline   Reply With Quote
Old 10-25-2008, 12:49 AM   #6
MommaBunny
10% of Profits Donated to Wildlife
seller
 
Join Date: Nov 2007
Posts: 2,055
My Mood:
Re: Anyone have experience with a infant/toddler on tegretol or keppra

Well, based on your son's conditions, I can recommend the treatment protocol that worked for my DH for stroke recovery...

If you click here, it gives a lot of information about supplements used for brain health and nerve function. Even though the article is about stroke, not hydrocepahlus and epilepsy, a lot of the functions are the same. Good luck, mama. You're very strong!
__________________
[CENTER]Herbalist AP WAH-Mama to my ADORED Daughter, 4/2/08 . Married to my Best Friend! [B]
MommaBunny is offline   Reply With Quote
Old 10-25-2008, 09:47 PM   #7
kaydonette's Avatar
kaydonette
Registered Users
 
Join Date: Jul 2008
Location: Ft. Leonard Wood
Posts: 148
My Mood:
Re: Anyone have experience with a infant/toddler on tegretol or keppra

My DD was on Kepprea when she was six months old and it made her cry from the momment we gave it to her unitl it wore off. she was only on it a month. We have not put her on another med since her siezures didn't happen that often. But now she has started to have them regulerly agian they are thinking about meds again.
__________________
Kayla SAHM to Catie 9/17/05 and Chambers 10/17/07 , and a proud to Grady
kaydonette is offline   Reply With Quote
Old 11-03-2008, 10:01 AM   #8
bpierce
Registered Users
 
Join Date: Jun 2008
Location: Florida
Posts: 41
My Mood:
Re: Anyone have experience with a infant/toddler on tegretol or keppra

I don't post often but I had to when I saw your question. Keppra gave my daughter (she was 2 or 3 at the time) horrible side effects. The most severe effect was that it increased the frequency and intensity of her seizures. She also developed myoclonic seizures and drop seizures which she never had before and hasn't had after. To our horror, she began to have seizures where she would stop breathing and turn gray. We thought for sure we would lose her. Her neurologist refused to consider that it might be the medication making her worse. We insisted she be weaned from Keppra and she has never had another myoclonic or drop seizure or a seizure as severe as the ones she was having. I haven't had any experience with Tegratol. After phenobarbitol, zonegran, keppra, depakote and klonopin we have come to the realization that the less medication she takes the better she is over all and that includes seizure control strangely enough. I have read that if the first medication doesn't work, the second only has a 10 percent chance of being effective and the odds go down with each consecutive substance. Good luck to you. It's really hard but so important. No one knows your baby like you do, especially not a dr. who sees him for a few minutes every few months.
bpierce is offline   Reply With Quote
Old 11-09-2008, 01:11 AM   #9
snangel's Avatar
snangel
Registered Users
 
Join Date: Jan 2007
Location: CDN
Posts: 1,282
My Mood:
Re: Anyone have experience with a infant/toddler on tegretol or keppra

My youngest takes Lamotragine now. He was on Teg though, and a bunch of others with limited success. We are on a fairly high dose of it, but it is working better then any of the others.
The teg made his reflux bad to the point of dehydration, so we switched. After that we went on phenobarb, and now on Lamotrigine, and have just finished weaning the phenobarb.
I would look further into the side effects of teg because like a pp said there are some serious ones. Could you ask your Nerologist about perhaps trying something else?
__________________
CanaDiaN momma to BOYS!
snangel is offline   Reply With Quote
Old 11-14-2008, 06:24 AM   #10
2sweetgirls
Registered Users
 
Join Date: Sep 2008
Posts: 8
Re: Anyone have experience with a infant/toddler on tegretol or keppra

Lydia was never on teg, but she was on Keppra. That was the absolute worst stuff. She screamed, wouldn't eat, wouldn't drink was lethargic and kept on having seizures. After close to 3 months they finally switched her to depakene and it was like a switch went on. Keppra rage was also a regular occurrence in our house.

Hope you get some answers soon.
Jenn
2sweetgirls is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump

Copyright 2005 - 2014 Escalate Media. All Rights Reserved.