Seeking Moms - Whittier, CA

How many seizures has she had ? 1 or 2 or daily she has them, there are many reasons something could on set a seizures and so many types of seizures, at her age hormones could play a part of it, my suggestion is to research it, they are many types of medications out there for right now they doctor might have her on a higher dosage, making sure no seizure can slip past the meds. You can't give up make another appt for her go back and let the doctor know now she acts like a zombie, also her system needs to adjust to it, if she is sleepy let her sleep her body might need it. Research research research yo can be the best advocate for her. Share the info with your daughter she needs to know about this to, so she understands what seizures are and understand when one starts to come on what to do .

Prayers sent

I say take her off the meds if you are concerned about the effects. I couldn't tell from your post what it was that she was having but it doesn't sound serious. Not really sure what the situation and meds are, so I hope this helps, or maybe you can elaborate :)

Hi-

I was diagnosed with Epilepsy at age 14, while I was in HS. It was an EXTREMELY difficult time. Unfortunately, they know VERY little about this disease and what causes the seizures necessarily (unless there is a brain tumor/injury which they can pinpoint or it is caused by some other underlying disease - Cerebral palsy, etc.) In my case, it was rather unexplained, which is what yours daughter's sounds like.

There are MANY drugs out there, all work slightly differently and all have their own set of side effects. In my case we had to try over 8 drugs before one worked for me. It was a difficult time, I was having constant seizures and the only thing they could do was trial and error. You can't just start or stop a drug either, you have to slowly increase the dose until its pretty high to confirm that drug won't work and as you are noticing, the more the drugs, the more the drowsiness and other side effects.

Stay on top of your doctor, make sure you are documenting the side effects and be sure to make it clear that the goal is not simply to stop the seizures, but for quality of life...no seizures but contant drowsiness, constipation, or jittery hands and headaches, is NOT a solution. The doctors will often only ask about seizure control, but the options have to be weighed with the side effects.

It is a SLOW process, but there IS hope. In time, we were able to find a drug that controlled my seizures without terrible side effects. I still had to deal with a small level of drowsiness but it was manageable. The process took about 2 years. I was on those drugs for about 8 years with good control, then when I got married we wanted to have children and were EXTREMELY concerned about birth defects with the medication; and after several options explored we were able to have a very healthy baby on a lowered dose of the medication, and you know what? My epilepsy went away due to the change in my body through pregnancy. I’ve been seizure free for 3 years without ANY medication; including a second pregnancy!

Hang in there, work with the doctors, make sure they know EVERYTHING that is going on and as others have said…empower yourself with knowledge…research the drugs she’s being put on and ask lots and lots of questions.

Hi R. - First of all, I have said a prayer for you and daughter. I know first hand what it is like to have a child with epilepsy, as my now 11 year old had his first seizure at age 8. Thank God he is now under control, and seizure free for over a year now, but it wasn't until we hit on the right medication and right dosage. It is not an easy process! As many of the other posts have stated, she needs to have her med levels checked to ensure that they are at a therapeutic level. I agree that seizure control is extremelly important but of course there are quality of life issues that need to be taken into account. This med is abviously not the right one for her. Be sure that you are seeing a neurologist, and one that you can trust nd talk to. This quality of life issue should be important to him/her as well, if not they are not the right neurologist for you. Once you get the med/dosage right, she will be better. I wish you the best! I know it's not easy to have a child with E - but there are a lot worse things to have. That's what I hold on to. Blessings to all of you!
M.

Tell the doctor about the effects of the medication. It may be that she could use less of it and still prevent the seizures. Pills are all the same size, but people are different sizes so I think maybe try half a pill and see if it still works.

R.,

I have been having seizures since I was 12 and I had this exact problem when I was 16. My meds got uped and I was very out of it. It was like I was drunk. I couldn't walk straight and I was slurring my words and I just kind of sat there. I don't know if that is what you mean by out of it. My mom took me to the doctor and they realized that I had way to medication in my system. I was told that because of my period it affected my hormone levels and made me react the opposite of what my doctor want to happen. So if I were you I would get her levels checked. Hope this helps!!

S.

Did you daughter(s) get the Gardasil shot or any other vaccination? If so, that is what is causing the seizures.

There are two sites I would suggest if the above is true. Join the yahoo group Let's Talk About Gardasil and also
www.tacanow.org

If you daughter did not get ANY vaccination then still check out the www.tacanow.org site as they do have information on seizures there.

The most important thing is to get a second opinion, another evaluation. On the TACA site there will be a Resources section there. Look up neurologist referrals.

This is so scary as it is an unknown. Once you become equipped with knowledge, you will have the power. So sorry this has happened to her but there are things that can be done:o)

Poor girl. I would demand a re-evaluation of your daughter. Make yourself heard at that doctors office. If she is so out of it because of the medication then you need to tell the doctor. If they do not listen to you then go to another doctor.

R.,

I feel for you - I am a single mom too.
I agree with the first post, I don't know what insurance you have but if its an HMO, I would ask for a referral for a specialist in neurological diseases. Also try to think back when did the seisures start, was it during an especially stressful time, or perhaps a food allergy finding the onset can help find the cure.

Unfortunately with doctors these days you have to be the advocate and fight to get the right answers.