Topamax

Deena - posted on 04/30/2013

My son is 5 and was just started on Topamax, he has seizures due to cortical dysplasia that began about 7 months ago. I have seen some improvement and side effects as well. It still too soon to determine which outweighs the other as he is still in the titration process. He no longer sweats and has decreased appetite; even keeping him hydrated is a challenge at times.
Epilim made him a bit beastly and didn't work for very long but on the Topamax he seems to have speech difficulties and some shakiness. Maybe these effects are transient.

Maritza - posted on 10/09/2012

Just a little information of my sons history before I ask the question. My Son has had seizure's since he was 7 weeks old. He was given phenobarbital, and then Topamax, then few weeks later was given vigabatrin (Sabril) becuase he was getting spasms. We were told he will be on it for a few months, then the spasms were gone but the Dr. keep him on Vigabatrin for serveral years more. Seizure's were somewhat control, he would get seizure's every month for a few days, until they added Depakote in Jan. 2011. Seizure's were then control a lot better, we would see seizure's every 6 months or so. and since he as been doing a little better the Dr. started to wean him off topamax little by little. By the end of the year if all goes well with the help of God, he should be off Topamax. Even though by looking online searches they state topamax and Depakote don't work well together, I kinda believe is, due to the side effects of the med's becuase my son at the start of Depakote he stop eating as much as he used too, now that we have been weaning off Topamax he has been eating a lot more, and a lot more alert with everything else, and with the help of all his Therapy's he has been receiving, he has been doing better.

So my question is: Does anyone have a child with Development Delays? and if so how well is the child doing? My son has Development Delays in every aspect, and he is now 6yrs old in a few months he will be 7yrs old and he has not speak a word yet. Once in a big big while it will sound like he says mama or papa but not sure. Now that he is being wean off topamax will his speech get better? Topamax information states patients will have speech problems while taking this meds.. Has anyone had this problem with their child? and if so how well is he/she doing with speech?

thanks

worry Mom

Donna - posted on 07/06/2011

Yes my son and did really well on it but we just had to increase the dose...

Amy - posted on 07/03/2011

My son is nine months now and is on the generic brand or topamax. They told us to start him the first week on one pill and for that whole week he had seizures at least two or three a day. Now since he has been on the full dose they are controlled ,but he will act like he is having one and laugh. I would have to pick him up at times. But this is only at night. So far he is doing good and well, is slow on his development with trying to crawl and me and my husband think it is a delay due to the seizures. He was 8 months when diagnosed with epilepsy.

Geri - posted on 04/27/2011

My 3 year old granddaughter just started it 2 days ago along with Keppra that the dr. plans to slowly take away. Is having a couple seizures a week, last week 4 4 1/2 min seizures.

Erica - posted on 04/18/2011

My daughter is 8 and has been on topamax for 4 years. She had one seizure during a weaning off process a few years back. and she had another during a growth spurt that she had and had to double up the medicine. She has been wonderful since. We are going to do the weaning process during the summer this year again. She has never had any side effects. Very happy with it. Wish us luck this summer and maybe she has grown out of her epilepsy!!!!!!!

Margret - posted on 04/29/2009

My son was put on Topamax, 2 yrs ago. He became very irritable and it didn't stop his petite mals. He is now on Depakote and hasn't had any sign of seizures in over a year.

Kahwey - posted on 04/28/2009

My daughter was on Topamx for about a year. At 1st the med seems working very well but few months later she had her seizures again n the side effect r no appetite n she didn't sweat at all (we stay in M'sia, tropical country like summer whole year round) n the face n body just turned RED n heaty. so when the body temp raises she will hv her seizure. Now she stopped Topamax n is on Keppra. n she has been sweating alot now.

Sarah R - posted on 04/28/2009

my daughter is 8 months old & on topamax as well as 2 other seizure meds & only has been on the topamax for at least a month now. so far, it's a good thing since she hasn't had any episodes since we started the topamax! (esp since she was averaging 3-4 seizures within 48 hrs every 7-10 days since she was born). hoping, wishing, praying that the other shoe won't drop & that this med will take.

Michelle - posted on 04/26/2009

I'm on the Topamax also, as well as epivil, tegratal, and phenabarbatal, things are getting better, but still unexpectetly happen. All for 12 yrs now. I'm now to be 38 on may 02.

Jessica - posted on 04/25/2009

My son is 7 months old and started Topamax a couple of weeks ago. He's had a few seizures since then but it is better controlled than they were before we switched meds.

NOelle - posted on 04/21/2009

if you are having issues with tripeptal ask for limectal or lamethrogine i think i may have speeled those wrong. My daughter has done amazing on this drug and every mother i have come incotact with says the same thign it took the place of keppra , topamax and tri with my daughter and has allowed her to lead a more normal life.

Jessica - posted on 04/20/2009

My 9 year old son was on it for a while, but he lost his appetite and some weight. So we weaned him off.

NOelle - posted on 04/06/2009

my daughter was on Topamax for close to 6 months as well as trilrptail .(sp) My daughter had issues with overheating and it caused her seziures to change to absent as well as her partail and complete. She was switched to limictal and has been seizure free for over a year.

Blair - posted on 04/05/2009

Back in Feb I posted that our 8 yr old son, Joseph was just starting Topamax. He reached 100 mg twice day. He is on depakote 375mg twice a day as well as zonigran 175 mg. Neuro is in the porcess of weining off because it has not made any difference with sx control. I take 50 mg to help with migraines. When I am on 25 mg it supresses my appetite but once I go to 50 mg and above nothing. I have found that my body will not tolerate more than 50mg.

Our son was hospitalized earlier this week for two episodes where he lost conciousness for 10 minutes and 20 mintues. the 20 minute episode follwed a partial seizure which he has mutiple times a day. Doc'd tried to blame it on the decrease of Topamax but i would not let them. Then they tried to blame it on his diagnosis of Lennox Gastaut Syndrome. Never did get to the bottom of what is causing these episodes. Oh well.

Tracy - posted on 04/05/2009

My son was on Topamax (about 10-12 mos. of age) and it made him incredibly sleepy & lethargic.  We had to take him off of it & change to another medication because of the side effects.  He has infantile spasm seizure

Cindy - posted on 04/05/2009

My twelve year old has been on it for about eight months now, the mood and behaviour side affects are a bit much but... she is also on Keppra and Frissium and that seems to be the best mix so far. She still has 5-15 a week but that is way better than before. The headaches are still fairly bad.

Amanda - posted on 04/04/2009

Hi! My now 15 mos old daughter has been on Topamax & Trileptal since 6 mos old. At first her appetite was decreased, until about 10 mos old, so we had a dietician/nutritionist for awhile thru early intervention, but then she seemed to get used to the med and started eating and gaining wt again. She has had no other side effects as far as we can tell. She's done great with it, 5 mos sz free. Unfortunately, she's currently having breakthroughs, has been for about 3 mos now. We're adjusting dosages and getting levels checked regularly, so hope something gives soon! Oh, and both docs (family phys & the specialist) freaked out with a possible UTI, b/c apparently Topamax can cause kidney stones. Nothing came of that, thankfully! Otherwise, she's developing on target and doing great overall! Happy healthy girl!

Amanda - posted on 04/04/2009

Quoting Heidi:

My son is eight now and has been on Topamax for over a year. This is the only medicine that has helped so far. He is also autistic and can not swallow pills, so it took us a while to find a pharmacy that could mix the medicine.

Heidi, my now 15 mos old has been on Topamax since 6 mos old.  We get a "sprinkle" capsule that we break open, pour the sprinkles into a small dish or cup, drop water onto (you gotta get the buggers to sink!), and use a medicine dropper--with the squeeze bulb on top--to draw the water and sprinkles up and squirt them in her mouth.  Just gotta watch hitting the tongue, they shoot back out everywhere!  Hope that helps you, although, I don't know how high the dosage goes with the sprinkles.  Hmm, hope it can help all the same.

Samantha - posted on 04/03/2009

my son is 5 yrs old and was diagnosed with lennox gastuat syndrome in feb 06, he used to have about 100 atonic (drop seizures) a day, now he hardly has any of these since being on topamax.

Heidi - posted on 03/27/2009

My son is eight now and has been on Topamax for over a year. This is the only medicine that has helped so far. He is also autistic and can not swallow pills, so it took us a while to find a pharmacy that could mix the medicine.

Jen - posted on 03/25/2009

Hi! My 15month old son has been on it for almost 6 months - he still is having seizures and now we are at our maxium dose I believe. I think we are about to change his meds. I have not noticed any side effects from it

Amanda - posted on 03/25/2009

My oldest daughter took topomax from around age 1 to age 3 with no breakthrough seizures that we are aware of. We have since moved on to Trileptal and her speech and motor skills are improving tremendously. The topomax did the job but I feel it really delayed her development.

Angelique - posted on 03/25/2009

My son did not do well on it... he was a totally different kid.. lost milestones and everything.. It was not a good choice for him or his epilepsy type. He is now on Depakote and seems to be taking well to it... or at least is responding better than topomax

Rachel - posted on 03/25/2009

Hi, I was diagnosed with gran mal nocturnal epilepsy when i was 12, I am now 35! I used to be on epilim, I used to have the occasional seizure during the night which started off with my arms twitching, & the twitches also occured during the day if had just woken sometimes, to the point i would throw a cup of tea! I have been lucky as my cousin also suffers with epilepsy & is really quite bad with it to the point it has really controlled her life, I am no longer on medication, a choice i came to on my own, (all to do with pregnancy really, & the lack of information i received when i was about 21) Anyway, I'm ok as long as i am not over tired which is difficult sometimes with 3 kids & a partner who works abroad.My daughter who is now 19 months has had 4 times when she has woke me with her cot banging and her limbs are twitching, she has had an eeg, and we are going to see consultant in April, The docs do not seem overly concerned, but i can't help think its history repeating itself kinda? She doesn't seem to have had the twitching since december, so i'm hopeing all is well. But i do really feel for anyone with a child with epilepsy, It really can be one extream to another, And i just hope you are all given the help and support needed. I started getting letters from my gps surgery a couple of years ago inviting me to an epilepsy clinic, Bit let, all the advise they wanted to give me i had already learned or found out myself!! x

Lori - posted on 03/24/2009

my son was on topamax until his dr. weaned him off.now he is only taking klonopin and lamictal and has been seizure free for a long time now.

Melissa - posted on 02/28/2009

My 7 y/o daughter Sarah has only been on Topamax for over 2 weeks now. They started her off at 25 mg twice daily and want to slowly week by week have her taking 100 mg twice daily. In the two weeks since she started taking it, she is a totally different person. She is not her "normal" self, and she is struggling in kindergarten again. I'm just wondering if this one is the right one for her. At the same time, we are gradually taking her off Trileptal. I'm glad to hear that Topamax is working for some, but unfortunately we sometimes have to be patient in finding the right medication that will work for our child.

Ally - posted on 02/28/2009

Hi, my son is 7 and he has been on Topamax for about 8 months and it has been the best thing for him. (Prior to that he was on Lamictal and it was awful). He also takes Epilim as a 'stabaliser'. We are very happy with he results we have been getting. The best thing is that he has been seizure free for 8 months.

Hope everything goes well

Ally

Kim - posted on 02/27/2009

My son tried it but it didn't work for him.  Glad your child is doing well on it!

Drewin - posted on 02/26/2009

Keirah has been on Topamax for about 5 years now (in combintation with various other meds) and doing wonderfully! We have to be careful though in the summer because Topamax can make some people unable to sweat, and she is one of them! The other benefit we are finding is it helps with her headaches. Glad your little girl is doing well!

Sarah - posted on 02/23/2009

my daughter is three yrs old and has been having fits since the age of 4 months she was put on topamax and she wouldnt eat anything her weight dropped so the doctor has put her on keppra as well when she started on the topamax her fits seemed to calm down but once she got used to it she was having fits every day but since the doctors have put her on keppra aswell the fit have got a bit better she still has 4 a week but its alot better then everyday

Blair - posted on 02/12/2009

Our 8 year old is just starting topamax. I am curious, what dosage is your beautifl little girl on?

Tammy - posted on 02/12/2009

my daughtr heidi is on it. but we have changed to zomig because it did not help her

Blair - posted on 02/10/2009

My 8 year old son just started with topamax. I have had serious reservations about this drug but reading your littel on is doing well gives me hope! "0)

Misty - posted on 02/10/2009

My daughter is 5 and has been on topamax since she was 8 months old and has done well with it. The key is making sure you feel like the right dosage is being given. We have had to go up and down with her medicine because to much makes her zombie like and to little let seizures come back. We've been seizure free almost a year so hopefully we will get to decrease her med soon!

Deb - posted on 02/06/2009

My 5 year old is on Topamax and Lamictal. She has behavioral and learning difficulties from the meds. She is not completely controlled, and her Neuro is talking about VNS surgery in the near future. It is a good drug, and has been around for years. Good luck with it!

Sharon - posted on 02/05/2009

Hi I myself have been on topamax for more years than I wish to remember I was one of the test cases here in Aust .The other Epiletic drugs over the years had different side effects Epilium eg. made me put on 20kg in weight in 2mths. One of the major side effects with Topamax though is weight loss they had to monitor my weight on a regular basis. I got down to 45kg, but it eventually balanced out but it took years. You do have to keep up your water intake, but you are suppose to with all epileptic meds, there is not one that I have not been on that you have not suppose to drink plenty of water on a daily basis with. And also make sure that you get regular blood  tests done to make sure that the levels are correct .

I have been seizure free for 10 years I think it a wonder drug

Stephanie - posted on 01/31/2009

My son is 3.5 years old and has been on Topamax since he was about a year old. We went about 9.5 months seizure free. Now, he is on Topamax and Depakote and have gone about 10 months without a seizure. So, I know it helped at some point; just not sure if it's the combination of the two or just the Depakote helping him now. The good news is that it doesn't seem to have any bad side effects on my son so for now, we are keeping him on both.

Cami - posted on 01/29/2009

Hi my son was on Topamax for 8 yrs, and did excellent. After 9 years of epilepsy has been weaned off, and is seizure free. I wish my daughter could take topamax we've struggled finding her a good medicine. Hope everything goes well with your daughter.

Trisha - posted on 01/28/2009

My son was on it for less than 48 hours because he went from our sweet little angel to the devil...he would just look at you and attack.  He would scream and cry something terrible.  And this is a child who is mute and the only noise he had ever made was laughing.  He had never cried in his life and he was about 5 years old when he was put on topamax.  But luckily for us after a day without the medication he was back to our sweet angel.  We still don't have seizure control, but we keep trying different combinations.  I am glad though that it works for so many of you.

Susan - posted on 01/27/2009

My 11 year old son has been on it (after going through several others) for about a year with no real side effects and it is controlling his seizures well.

Good luck!

Loretta - posted on 01/26/2009

My 7 year old just recently started Topamax about 1 month ago. So far so good.

Tea - posted on 01/25/2009

hi my daughter has been on topamax for 16 months now she is three the only problem we r facing now is her appetite and her consultant is trying to take her off it as she is not gaining any wheight apart from that the drug is fantastic i found and im a bit reluctant to take her off it

Bonnie - posted on 01/17/2009

My daughter is 16 and has been on topamax for 4 years, but 2 years ago was also put on Epival, the topamax wasn't working, but she kept her on it to counter act with the Epival..

Cassie - posted on 01/14/2009

My daughter has been on Topamax and Depakote for years now and the combination works for her. She does have seizures occasionally. We also have the emergency dose of diastat. This is the best combo of meds that she has been on in a long time and I hope it continues to work for your child.

Lindsay - posted on 01/14/2009

My son was put on Topamax at 11 mo. He was only on it for a week bc he completely quit  eating, his dr said that it was normal so now he is on zonegran. His neuro said it was almost exactly like Topamax but let severe side effects. His seizures have been under control since we started the Topamax tho! Im glad your daughter is doing so well!

Ericka - posted on 01/14/2009

My son didnt do well on topamax it was actually giving him seizures...switch to depakote which he did well on..He was seizure free for 3 yrs (No meds) and now after having a seizure in the summer of 07 he is on Lamicatal and has been seizure free...good luck...i guess all meds work different on all children....

Rhon - posted on 01/05/2009

The only side effects I was warned about were loss in peripheral vision and kidney stones.

Rhon - posted on 01/05/2009

My daughter has been on topamax for more than 5 years and has sz control for over 3 years. In December, she szed three times and we are struggling with control again. I have rectal Diastat and it stopped the szs so far but she has a history of status epilepticus. Very nervous this time around. Knew szs would happen again. Just knew it. But perhaps we can find a dosage that works, given enough time. Eeg coming up this week. Doubt it will show anything.

Christine - posted on 01/02/2009

My 3.5 y/o son has been on it since he was 10 mos. old. We had to adjust his dose, a year ago, but other than that we have had no problems. We're hoping to talk to his Neuro about weaning, this summer.