Anyone have experience with seizure meds?

[luvstiggertoo]

We started my dd (1yr) on Topamax on Friday. She is not tolerating it very well. She is tired and irratable. If she is not sleeping, she is crying.

Any ideas on how long this will last? We feel as though we are taking a huge step backwards in her development.
She just recently started to make some great strides....just began sitting up, is more responsive, and then we have an EEG that showed evidence of frequent brain seizures, so now we are drugging her. As a result, she can have no play/developmental time and I fear her progress will come to a screeching halt.

Any thoughts?

 

[joanchris]

Have you talked to her Dr about her reaction? Maybe the Dr could start her slower on it. I have a (100% controlled, NOW) seizure disorder, but had to fire several neuros to get to this point. Same with my DD10....she has multiple problems (Rett Syndrome), including seizures. She has been on several different drugs (mostly bec of allergies to them), we fired her first 2 neuros, til we found one who would work with us to find a good med for her--one that controlled the seizures without having horrible side effects.
Call your Dr, and, just LOOK for now, at other Neuros in your area, see who's out there, find people if you can who know them, etc. If your daughter has early intervention/therapists they may be good people to ask for recommendations. If you need to don't be afraid to see a new doc, If I didn't I'd have never been able to have children, as I wouldn't have them if I kept having seizures.
Good luck, give it another day or two, it takes some getting used to having the meds in your system.
Joan

 

[luvstiggertoo]

Thanks Joan.
I have spoken with her neuro and he has agreed to let us cut her dosage in half....only giving her the nightimte dose. But he cautioned us that it is not enough. The dose she is on is pretty low.
We are going to seek a second opinion too.

 

[itsagloomyday]

Hang in there. Seizure meds for the little kiddos are a tough call. My son was on Topamax at 1 year. (After multiple failed other seizure meds including some that were still in the research phase.) Side effects and tolerance can vary from person to person. One person's experience with one medication can totally differ from another. The drug that works for person A may be a horrible choice for person B. A lot depends on seizure type, etc. Be aware that Topamax has been associated with decreased sweating and also language issues (specifically word finding). Take extra precautions in the heat.

I would also suggest contacting the Epilepsy Foundation of America (they have a website) and see if they can send information on anti epileptic drugs. See if they have a local parent support group or can link you with another parent who's been there.

Most importantly go with your instincts. If something doesn't seem right, let your neuro know. PM me if you have any questions.

 

[lovespoohbear]

I am on seizure meds also. I take dilantin. I have been on it for almost 10 years now. tiredness is one of my side effects too. a friend of mine just recently started taking dilantin too for seizures and she was overly tired not wanting to do anything for about 2 to 3 weeks till her body got use to the meds. be patient and see how your daughter does after a few weeks and see if there is a difference. her little body might just have to get use to the drug in her system. i hope everything goes well.

 

[SueM in MN]

Another person you can ask for advice is the Pharmacist. Even though most people just get their prescriptions filled, Pharmacists are very knowledgeable about medications and can be helpful.

Any seizure medication is going to cause some tiredness. The trick is to find one that controls the seizures with side effects that you can live with. A lot of times the side effects can be minimized by starting the medication very slowly and increasing the dose very slowly. And, as was already mentioned, people tend to get acclimated to the medication and many side effects will decrease after a few weeks.

Here's a link to the Topamax website. I noticed they had a good page of links, including a link to the Epilepsy Foundation.

The last thing I'd say is listen to your feelings. My DD had a serious liver problem from her first seizure med (not Topamax) and we were lucky she recovered well and is doing well on anothe medication.

 

[luvstiggertoo]

Thanks everyone for your replies. Gloomyday....I'd be interested to hear your experience since you also had a little one on Topomax. Our issue right now with dealing with the side effects is the timing. She has her first birthday party on Sunday and we want her to be alert and happy. We have spoken with our neuro and have decided to cut her dose in half temporarily. He started her on 50mg a day (25mg in AM & PM), but he agreed to let us take her back to just 25mg at night to try to ease her in to the meds. We know that we will eventually have to go to the 50mg and/or try a new med. He suggested phenobarbital.
I will definitely look into the Epilepsy Foundation.
What has been tough for us is that Taylor has never had an outward sign of a seizure. We were shocked when we were told that she was having frequent seizures throughout the day. Its tough because we can't really see the effect of the meds.
Anyway, thanks again for everyone's thoughts. I'll keep you all posted on our progress.

 

[kellyf2626]

This thread has been interesting....I noticed the word Topomax, and started to read. My husband has been taking Topomax for migraine headaches for the past year or so as a preventative.

Good luck with your dd, and definetely seek other opinions until you feel comfortable with her treatment!

 

[luvstiggertoo]

Hi Kellyf!
Thanks for the good thoughts!
I also found it interesting the Topomax is used for migraines.
Hmmm....

 

[abbylukesmom]

I'm sorry to hear your DD is having to take anti seizure meds. They really stink! My son began taking meds at 2 years of age.

HAve you found the efa.org website? They have a parents forum, which is very helpful at answering lots of questions. Try this link
epilepsy support group


Have you been warned to be cautious with heat exposure? A big side effect of topamax is not sweating. Make sure your dd stays cool!

Good luck!
Laura

 

[mommie2angels]

Geri, our daughter was on Topomax. We have just weaned her completely from it so that we could add another med. The only reason that we weaned her from it is because her seizures were changing once again and the Topomax was no longer helping with them. I do remember how hard it was for her when we first started. It was recommended to us by another parent to try increasing it by a quarter of a pill for one week. We were increasing by half every two weeks. Adding a smaller amount really seemed to help her. Also letting her go two weeks or even more before increasing seemed to help her. She was still irritable but not as bad and it didn't last as long. One thing we noticed with each increase is that her appetite decreased so we had to be really careful with that. I would be glad to discuss this more with you if you would like. If so just PM me.

 

[luvstiggertoo]

mommie2angels...thanks for your input. We have decided to slowly start her on the meds and she seems to be doing better. The doc started her on 50mgs a day but that was just awful. We are now giving her just 25 mg at night and she seems to be tolerating that. We plan to increase her in another two weeks. That's a good idea to increase by 1/2.

 

[Jennay]

I have had lots of experience with seizure meds. I had epilepsy until I was 15 years of age. My daughter has Angelman Syndrome and has 50-100 seizures a day, on a good day, ON meds! She is taking 100mg of Topamax twice a day. She is also taking Keppra 500mg in the morning 750mg at night. We have tried MANY different seizure meds. The one that has stayed the most consistent is Topamax. Topamax is a good medication to treat a variety of seizures. What types of seizures is your daughter having? Are you aware of the different types? Does your daughter just have epilepsy? Please feel free to PM me. I can answer more of your questions if I know a little bit more about your daughter and her symptoms.

 

[barrysprot36]

Hi

I don't know anything about the meds in US but here in UK I know about. Our DS2 aged 13 has had epilepsy since 2 yrs old. He too had EEG's that showed constant seizure activity, that makes kids tired too. Our son has Lennox-Gastaut syndrome along with a mitochondrial disorder and Autism. DS has clusters of major seizures.

DS is on 3 types of meds: Stiripentol (very new in UK), Keppra and Tegretol (Carbamazapine). The Tegretol is a tiny amount but he can't tolerate it being withdrawn - we've tried numerous times. He also has a Vagus Nerve Stimulator fitted 7 years ago. This changed his life. Up till then he seemed drugged up with meds bt this gave him his lively personality back.

We are also trying another regime at the moment wherby we give him a small dose (10mg per day) of Clobazam for 3 days only BEFORE we think he's going to have a seizure. So far it's working really well.

Hope your DD has a good Birthday.

Caron

 

[JenJen]

I was on topamax a little over a year for siezures and I loved it. It got rid of my seizures, I lost wieght, and my headaches went away. THen I went to the eye doctor because I could not see much anymore and I found out that I lost 50% of my vision and it was caused from the topamax. It is a very rare side effect. If you take this medication I would get your eyes checked frequantly. I am not writing this to scare you I just want you to be aware that is one of the side effects.
JenJen

 

[LuvN~Travel]

I think it all depends on the individual. Our daughter has used Dilantin in the past, but the docs don't like to use it continuously due to potential liver problems. She used Tegretol/Carbotrol for years and it caused her so much weight gain! It was horrible. It was like 'LOCK THE CUPBOARDS' as far as her appetite went. Then she was on Topamax for a while and it definitely made a dent in the old appetite. (They are actually using it for weight loss too). She did good on it, but her doc moved her to a different prescription which she is currently using which is Trileptil and Keppra. They can make her sleepy sometimes, though which means we finally had the school put her harder classes in the afternoon, after it started wearing off some from the morning dose.
You probably won't know for sure which is best for your child until it is tried.
There definitely isn't any hard and fast rules which I can see.
Kim

 

[BeccaGrace]

My dd2 is on Topamax (60 mgs per day)...Her neuro started her VERY slow and I think it helped her get used to it. We did one week of one in the morning, then one in the morning and one at night, and worked up over a month until she was at two capsules in the morning and two at night.

The non-sweating and speech/developmental delays have been our major side effects but she has also been seizure free and that was a fair trade-off in our situation.

My dh also has seizures and takes Tegretol and Keppra--he has tons of side effects and is always tired. It is interesting to see the impact on him and wonder if it is the same for our dd since she is too young to tell us That is the hardest part with the little ones--they can't tell you how the meds make them feel. But we are really happy with her neuro and the concern he has shown with any side effects. I hope Topamax helps her and the side effects decrease with the lower dose--I really believe the slow start helped us and I hope that your doctor takes a similar approach with her increase. How much does your DD weigh? Her neuro worked her from 15 mg to 60 mg and she weighs 24 pounds--it is likely that going right to 50 mg just threw her off. Hopefully things improve starting slower. Good luck & feel free to PM me if you ever have any questions about the meds or seizures in general. And I agree with everyone who mentioned the Epilepsy website--the parents helping parents board on there is awesome!