just lookin for some feedback

[Ryan]

Hello to whoever may be reading this. Im not trying to tell everybody a sob story or try to come across as somebody whose problems are worse than the next. I just want to see if i am the only person that is going through this. I have a 3 year old daughter who has been having seizures since she was 6 months old. From 3 years ago to today she has had over 150 seizures ( maybe even more). Her mom and i believe that the shots she got when she was a baby were the reason for her seizure activity to start (she started having them the day after her shots). These seizures of hers have been soo bad that we have to call an ambulance and when she arrives in the E.R. the doctor has to give her propofol ( which my understanding is a seditive givin to adults). My daughter ends up in the pediatric I.C.U for a week with feeding tubes and breathing tubes down her throat because they have to pump her full of soo much drugs to get these to stop. Her seizures have lasted as little as 15 seconds to 2 hours long. Our neurologist has put my daughter on many different types of meds. She has settled on Keppra, Phenobarb, Lamictal, and Ativan (we only give her ativan when she gets sick or has more than 2 seizures in one day) Yet they still dont stop these things, We have taken her to see a specialist in San Francisco and that didnt help at all. Ever since my daughter has had epilepsy it has opened up a whole different world for us. We have now had friends whose kids have just started having them and friends that are my age that have had them also (im 2. Although its nice to be able to help my friends when they are going through the same exact thing we went through, I am trying to reach out and try to see if anybody has been through the same thing ive been through or god forbid maybe worse. Im sure all of you feel the same way about my child as i do mine. She is the most important person in my life and im just trying to get some feedback. Even though ive got the love and support of my family and friends they just dont understand the mental toll and emotional stress it has put on me and my girl. Thank you for taking the time to read this...Im sorry you have to go through all the hell that epilepsy has put us through but hopefully they will find a cure.....

[Nakamova]

Hi Ryan, welcome to CWE.

A big hug to you, and a wish that you can get some relief soon for you and your daughter. We have plenty of CWE members who are parents and caregivers to kids with epilepsy. The "Nursery" forum is a good place to start, and you can search for info on specific topics using the Search tab at the top.

Best,
Nakamova

[Rae1889]

I'm so sorry your little girl and family and friends have to go through this. But your right, at least you have people who understand and you are not alone.

While there is a lot of controversy about whether a shot can cause seizures or not, I personally believe that it can. Gardasil is a big one right now that is under fire for causing epilepsy, dystonia and death in teenage girls.

It sounds like she is on a lot of medication, and from reading on here it seems that the more medications on is on, the more they fight each other in our systems and nobody wins. I'm assuming you tried all the meds separately first? If not, why? Ask your neurologist. Also check into the ketogenic diet or other epilepsy diets and neurofeedback. Your neurologist may be against this as most don't believe it helps. But several members use some form of diet to their advbantage. I myself went gluten free and cut my seizures in half or better. * which by the way have you checked into the possibility that it is a food allergy causing these seizures? As gluten, soy, msg, casein, eggs, and dairy can cause seizures. As well as tomatos.

Welcome and let's hope things get better

[Bernard]

Hi Ryan, welcome to the forum.

Have a look at some previous discussions about the potential link between vaccines and seizures/epilepsy:

http://www.coping-with-epilepsy.com/...s/vaccine.html

[Bergoomay]

Ryan, I am sorry to hear about your little girl's struggles with E. This is a great group to look to for support and I see Bernard has already provided you some links to review. I wish you the best in locating someone to chat with you, as the best person to understand your troubles are those that have gone through it as well.

[huskymom]

Ryan...best of luck to you and your family and your sweet baby girl!

[Ryan]

i forgot to list my daughters most recent medicine they have added along with the regular keppra,lamictal, pheonobarb, and (ativan when sick or has more then 2 seizures a day ) the dr has put her on banzel aswell. she has been on banzel for almost 3 weeks now and it seems like ever since then she wakes up in the morning and is okay then we give her her morning meds and instantly she goes to sleep for awhile when she wakes up she is very dizzy and cannot walk staight so she will go and lay back down she also has been throwing up lately (we took her to the pediatrician and she checks out perfectly healthy but looks just miserably like she just doesnt feel well at all.) by the time she feels better and seems pretty much like herself its time to give her her nightly meds and the same cycle goes on. last week she had 6 seizures in one day 4 the next day and 1 the next then no seizures for 4 days which 6 was probaly the most we have seen in one day for awhile it was 1 or 2 a dayfor 3 or 4 days then none for 1 or 2 days. this thursday she will have reached the max amount of banzel the dr wants her on right now. maybe it was just getting to that point was rough i dont know. just hoping this dose of everything is the right mixture finally. because it doesnt seem like it now. she goes to school now and they say she constantly sleeps she is very behind in her speech she says maybe a couple words and know a couple signs. so i guess my question to anybody who can relate is has anyone else themself, there child or anyone they know acted this way on banzel? and also to anyone who there child began having seizures young when did they start talking? at her school she has speech theropy, occupational theropy and physical theropy i really love the school shes been going since end of july we really havent seen any improvement in her speech. any thoughts or tips of what i can do with her at home to help her speech improve?

[Endless]

Ryan,

I am so sorry your little girl is going through all this. It's so hard as a parent to see your child sick. Coming here for learning and support is a great step. The people here are wonderful.

In my opinion, any vaccine or drug could cause a seizure. Different individuals react differently to medications. Heck, even some seizure medications can cause seizures in some people (they list that on the package insert).

She has had seizures that are 2 hours long? Seizures over 5 minutes are serious. I'm hoping her meds will prevent this in the future. I'm glad you went to San Francisco and are seeing an epileptologist (seizure specialist). Are you happy with the care her doctors are giving her now?

I understand the toll this is taking on you, and her. Lean on me, lean on all of us. We are all here for you.