Is anybody's child taking tegretol (carbamazapine) ?

Helen - posted on 11/21/2009 ( 38 moms have responded )

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My 3 and a half year old daughter was recently diagnosed epileptic. She has tiny seizures about an hour after going to sleep and they are very random meaning she could have 1 a week then have nothing for 6/8 weeks they last about 15 seconds. Yesterday at the hospital it was decided to start her on tegretol and im just wondering if anybody had any experience with this drug and have there been any side effects while taking it.

Me being a typical mum im a bit worried about my daughter having to take medication.

Any advice is welcome.

Thanks. Helen x

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Carlenemcken - posted on 08/25/2012

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My daughter was diagnosed epileptic 4 months ago, was placed on Tegretol, had one episode after,but none for 2 months since last episode, I think the seizure activity was induced by the fairy tale story she was listening before she fell asleep. Just be compliant with your medication therapy prescribed, and most importantly Pray, to the Lord, God Almighty-JESUS CHRIST for with him all things are possible. Every child differs, what may work for Jane, may not work for Sue, just trust in the Lord and monitor your child for side effects or inappropriate behaviours and inform doctor. Epilepsy is really 'scary' Be strong for your daughter, Make your home comfortable and enjoy every moment of your daughter. and most importantly take one step at a time.

Kathy - posted on 11/22/2009

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Hi Helen,

My son Alex was diagnosed 18 months ago with epilepsy. He is on Tegretol and has no side effects what so ever, he was on Epilem prior which he had mood swings with. But since on Tegratol which has been about 12 months he has not suffered a seizure either.

I guess it is different with everyone but for Alex it is great.



Kathy

Ellen - posted on 08/13/2013

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I myself have been taking it since I was about 3. I was taking off of it at about 8 and put back on by the time I was 10. The only real side effect was I was very tired all the time until I got used to taking the medicine which was a few months. I am still on it today and no problems. I hope this helps.

Julie W. - posted on 10/14/2010

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My son started having petite mal as well as grand mal seizures when he was a baby 25 years ago and we tried a variety of seizure medications and what he's still taking and has been taking for 25 years is Phenobarbitol and Ethosuximode (Zarontin). I had heard that Tegretol causes overgrown gums and hairiness and didn't want my son getting those side effects and his phenobarbital/zarontin combo has kept him seizure-free since 1993. I haven't noticed any side effects from these meds except late afternoon, he gets a little sleepy from the phenobarbitol but he might just be sleepy that time of day anyway -- I know I am!
If you want to talk about anything else, I'd be happy to help or research other medications for you. Or if you just need someone to talk to, I've been there and can offer my support.

Cornelia - posted on 10/13/2010

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My son has been taking Tegretol for over a year now to control front lobal epilepsy (night seizures and daily absense seizures). We've had to up his doses considerably in the last year and he's not completely seizure free yet. Side effects I've seen are bleeding gums, skin rashes and increased weight (but the weight may be more due to the Depakin he took last year). We regularly have to take blood tests to check his levels as he suffers regularly with diorreah which effects assumption of the drug. Other blood tests to watch are those related to liver function and sugar levels. Hope it goes well for you.

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Marilyn - posted on 04/02/2014

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My step daughter was put on Tegretol when she was 5 and had the exact same symptoms but the doctor did not take her off it. She was on it for 5 years and never returned to being that happy normal child again. She never learned to read and is now considered disabled. I think the medication damaged her brain and after reading your story I am even more sure.

Angela - posted on 10/24/2013

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I don't know of any children on this medication (but don't know of any children who have seizures either), but I know of SEVERAL adults - including my own husband.

That's not to say it's unsuitable for children. Remember, many years ago there was far less choice of suitable anti-seizure medicines. Use of barbiturates was very common - Phenobarbitone in particular.

Tegretol for a child is considerably better than barbiturates.

Bronwyn - posted on 08/12/2013

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Hi, my son has been having symptoms very similar to what Helen described. He has now been diagnosed with Panayiotopolous Syndrome and is treated with Tegretol.
Im a little concerned though as he seems to be suffering from hallucinations lately. Has anyone else found this?

Sandy - posted on 06/25/2013

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my son was dx with complex partial seizures when he was 7 he is now 17. Hes been on tegretol since he was 7. It was working good until the past year and we have had to increase his dosage several times. Side effects are hes tired but hes gotten used to that. I give him a b6 vitamin. he now takes 800 mg a day. dr is running more test and is talking about changing meds. Praying the dr finds something to control his seizures.

Vanessa - posted on 09/29/2012

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Our journey has just begun.



I have a 12mth old who has had 3 seizures so far. She was admitted overnight this week to be monitored and to have bloods taken. They also started her on Tegretol. We have seen a specialist and have an EEG on Monday... the hospital stay sped up our appointment time.



Feeling anxious about the seizures and my baby being on medication!



Fingers crossed Tegretol works for us, without too many side effects, and it slows down or completely stops the seizures!

Dawn - posted on 09/28/2012

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When my daughter was five, she had her first seizure. She would have them every couple of months, not too bad. Simple seizures, right side. Normal EEG, normal CT, not sick, so could not be explained. She was put on Tegretol, and this was awful for her. She was so tired. She stopped playing, only wanted to sleep, and her learning stopped at school. She was beginning to read, and now forgot everything . Her teacher was asking what happened to the eager, happy little girl. What was worse, her seizers increased to 3-4 times a week. Doctor said when kids are weaker, they have more seizures, which is what this med did. They wanted to increase meds, add more, hospitalize her to video her to see where seizures were coming from. I said no because she had fewer before. I took her off meds and found the key is keeping her health and well rested. I think she is hypoglycemic. We have ended up in ER with seizures after being sick ONLY if she hasn't eaten in awhile. I increased her protein, keep her hydrated. She has been seizure free, med free for one year now. She is 8 1/2 years old.

JUDY - posted on 10/13/2010

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my son was diagnosed when he was 6 months old. Some of the drugs made him fly off the wall, then they decided on Tegretol and it worked. Some have side effects and you have to keep an eye on your daughter and let doctor know them.

Karan - posted on 05/04/2010

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Hi Helen,
My daughter is severly handicapped and has been on numerouse seizure meds. She was on Tegretol. Your child will have to have blood work done about every 6 months or so, or at least that is what they did to my daughter. it can affect her liver. She was on it for a good many years before that and the combination of 2 other drugs started to take effect on her. She had to be taken off of it because her liver started to fail. I don't wasnt to scare you because Alea's doses of the 3 meds that she was on played the part in her problem. It is a good medication when nothing else works. My daughter has up to 20 seizures a day now. That has dropped alot. I hope your child will be ok. I know what is like. I hope this helps.
Karan

Tanya - posted on 04/19/2010

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Hi, My son Nicky was dignosed with Epilepsy a week ago, he has been on Tegretol for only 4 days now, but vomits within a hour of taking it. He is very tired and can't sleep because he is itchy all over, especially his head. I am waiting for consultant to call me back but reading all the comments below most people don't have any side effects. He is only 7 and its all new to me I am really worred.

Helen - posted on 12/15/2009

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Thanks girls, So far so Good. The one good thing ive noticed since she started on the medication is that shes sleeping through the night which she hasnt done for a longgggggggggg time.

Tanya - posted on 12/11/2009

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My son has had drop seizures since he was one-year. Since then we have tried many different medications that just didn't work with him. He's been on Tegretol since he was three (he's 8 years now) and it's the only one that has worked this long. He doesn't have seizures anymore (knock on wood) even though there is still seizure activity going on.

Charlotte - posted on 12/09/2009

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Hi, my daughter was diagnosed Epileptic at 7 weeks old. She was put onto Phenobarbital Sodium and Carbamazepine. She has recently been weaned off the Phenobarb and she is now on just Carbamazepine. We have noticed no major effects, she does tend to get crabby towards her medication time, but once she is given her meds, she is fine. So far she has had no more seizures ( touch wood!! ) so it seems to be doing well for her. Good Luck and I hope it all goes well for you and your family.

Kate - posted on 12/07/2009

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I was on Tegretol as a child,and as far as i can recall i donot rembember haveing any.

Stacey - posted on 12/06/2009

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Hi Helen
my daughter was diagnosed with epilesy at 2 years old, she has been on tegretol for about 5 years now totally side effect free through out her treatment, she does still have the odd seizure but nowhere near as frequently as they were before.
Stacey xx

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My daughter started having seizures in Oct. 2000 at the age of 10yrs old. She tried several medications, but had bad luck with most, meaning they just didn't work to control the seizures. She is now taking Tegretol alon with 2 other antiseizures meds. I think the Tegretol has helped some, not much, but I can say that she hasn't had any side effects from it. The medication that has caused a lot of side effects is Depakote. If that one is ever suggested, see if there is any other alternative. Of course, your daughter will have to undergo blood tests regularly to make sure there are no problems caused by the medication.

Tammie - posted on 12/05/2009

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Hi Helen,
My 3 1/2 yr son has been on Tegretol now for around 2 1/2 yrs.... he has seizures most days of the wk...I can't see any side affects from him taking his tegretol and he has been at a very high dose for his size for most of the time he has been on it... I just ensure that he has his regular blood tests to check his levels asre in safe range as to not risk any kidney/liver damage.... Hoping it all works well for you,Tammie

Helen - posted on 12/04/2009

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Ladies thank you ever so much for your comments they have helped me so so much. It is pretty scary when a child has a seizure but im now starting to live with it as is my daughter its part of our life now. Thanks again every1 x Helen x

Deana - posted on 12/03/2009

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it worked very well for us for several years until growth spurts,different meds added to control seizures again,no side affects for us,also topamax was also used at the time. now it's trileptal,depakote,zonegran,little girl has not had a seizure in a month she's 10 now.

Donna - posted on 12/03/2009

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Hi Helen...my son has been on Tegretol for 5 years now (hes now 17) and hasn't had any side effects from it. It also stopped him from having any seizures. He would usually get them at night during sleep, his mri's and eeg's all come back good. Good luck with your daughter..she will be just fine on the meds.

Tracy - posted on 12/03/2009

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Hi Helen, i am an epileptic myself since i was 14 and am 28 now.I was on Tegretol 2 years ago, was changed to Epilm, but would say i never felt so better than when i was on Tegretol. Side effects that i found i had got was depression, but was medicated for that as well. Its really i spose what suits your child best, i hope it works for yours though and you dont have to go through the nuisence of finding the right medication.

Wish you and your family the best.

Tracy

Jenise - posted on 12/03/2009

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My son was diagnosed in Apr. '02, (age of 3 1/2) with epilepsy and was started on the carbamazapine. His seizures were when he slept and were facial twitching. He had the liquid form and took that for a couple years til he got old enough where we couldn't hide it in anything. Then he went to Carbatrol. The carbamazapine worked great for him until he outgrew it. He now takes Trileptal and Keppra :( I like the Trileptal but not keen on Keppra. P.S. He is now 11.

Jenise

Melanie - posted on 11/30/2009

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Hi! My name is Melanie and I am Pregnant with my first but i was diagnosed with epilepsy when i was 6 months of age. I have been on every seizure med. out there and now that I am pregnant i have been seizure free now for 7 1/2 months but I am on trileptol that I swear by it!!! It is the only one that has worked for me. I was admitted into Thomas Jefferson Hospital In philly a while ago under DR SPRAWLING. He is the best in the WORLD for seizures in kids and in adults I have 12-15 different kinds of seizures but i have been feeling great it isnt easy to see anyone to go through seizures but nobody knows what it is like until u go through it urself. All u can do is be there for ur child, and really do ur homework on meds b4 they put ur child on it! I have like 12-15 binders full of side affects etc different studies about the meds and just studies as u grow up. Every age is different, SUCH AS: girls r different then boys (Hormones) its a lot on the parents so hang in there and if u need to talk plz feel free to email me @ melnbill06@aol.com

Helen - posted on 11/30/2009

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Thanks everyone so far so good ive not noticed any side effects , i know its early days with the medication but hopefully starting her on this medication will be a good thing. x

Loretta - posted on 11/30/2009

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Hi Helen. My eight year old son has been on Carbamazapine for about a year and a half now. He has no side effects and no seizures. I have always wondered why his seizures were always with an ear infection. Everytime he had one, he was diagnosed with an ear infection. I went to an Ear, Nose and Throat specialist with everything coming back normal, no ear problems. So I still wonder why that happens. I hope everything works out for you and your daughter, good luck and you are in my prayers.

Deborah - posted on 11/29/2009

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I have been an epileptic since I was about 1 1/2 to 2 years olds I am 52 now. The doctors have tried to change my medicine I take, because the medicine I take can cause bone problems in older people. They tried to put me on tegretol but I am alergic to it, I was constantly scratching it made me itch all over my body. I take Dilantin 100mg. 3 times a day and phenobaritol 64.8 twice a day. They have put me on calcium 3 times a day because my system won't accept any other medicine. As long as the doctors have found a medicine that agrees with her and works for her, and she takes it likes she should and see's her doctor regurlarly for blood tests for medicine levels checks she should be ok.

Carrie - posted on 11/28/2009

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Hello! My son is 2 1/2 and was diagnosed with epilepsy around 14 months old. We switched from brand name Trileptal to Tegratol (generic) in July. He was prescribed a normal amount for his age/weight/height. That dose should have been the right amount for him but within 24 hrs of taking the medicine we were in the hospital due to a severe overdose! Very scary! He recovered with no ill side effects and is still on Tegratol, just a much lower dosage. Happy to say he's beens seizure free for almost 5 months now. We are also on Keppra generic as well as the Tegratol. Just be careful and watch out for any side effects. Sometimes the side effects go away within a week or two of regular use. Good luck!

Sarah - posted on 11/27/2009

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Hi Helen! : )
My Nicholas has been on Tegretol for almost 2 yrs and the only "side effect" we've found is a better disposition! He's the same as your daughter that he only has the clonic tonic seizures in his sleep, but has absense seizures while awake. On top of his epilepsy, he's Asperger's, so the Tegretol is used two-fold with him as a seizure med as well as a mood stabilizer - which has been WONDERFUL!!! Hopefully your daughter responds as well to it as Nick has!!
Sarah

Helen - posted on 11/27/2009

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Thanks everyone for your replies. She got her first dose of medicine a short time ago so fingers crossed all goes fine. Will let u all know how it goes with her.

You have helped a lot x

Harrison - posted on 11/27/2009

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My son developed Epilepsy when he was 19 years old. It came on out of the blue. IT was very tuff for him as he waaas in college, just started living on his own. He is on was on dilantin first but he was very tired all the time. Now he is on Tegretol, and two other meds as well. His grand mals are being controled but he still is having petite mals and Auras. So he is living with us and we keep an eye on each other! The only things that he notices and we do as well is that he tires easily. By early afternoon he needs a rest. He takes time release in the morning and at bed time!

Shelia - posted on 11/26/2009

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my son first started on tegretol, and he didn't have any problems with it. I had worries to at first, but everything worked out fine, but you should still watch for anything that doesn't seem right, everybody is different, and med's affect everybody differently, but my son had no problem with it.

Drewin - posted on 11/24/2009

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Hi Helen. My daughter had her first seizure at 3 mos old (she is now 11 years old) and
Tegretol was one of the first meds she was on. It worked great for us until she built up a tolerance to it. We just made sure to have her levels checked regularly (monthly blood draws) to make sure her levels were in the theraputic range. Good luck!

Claire - posted on 11/24/2009

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Quoting Helen:

Is anybody's child taking tegretol (carbamazapine) ?

My 3 and a half year old daughter was recently diagnosed epileptic. She has tiny seizures about an hour after going to sleep and they are very random meaning she could have 1 a week then have nothing for 6/8 weeks they last about 15 seconds. Yesterday at the hospital it was decided to start her on tegretol and im just wondering if anybody had any experience with this drug and have there been any side effects while taking it.
Me being a typical mum im a bit worried about my daughter having to take medication.
Any advice is welcome.
Thanks. Helen x


 



Hi! My name is claire from philippines. Ive been takin tegretol since 8 yrs old, everyday until now! Im already 32 yrs old with 2 kids.  Im living a normal life.  Its just that I cant be normal if I wont take tegretol. Ive been dependent on it.  Everytime I forget, I would have seizure during sleeping time...but everything else is normal.  God bless you and your kid!



 



 

Helen - posted on 11/22/2009

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Thanks so much for your reply. I guess ever mum is going to be scared putting their child on medication. Im just hoping Erin doesnt get any side effects when she starts this but we shall just have to see how it goes. Thanks again x

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