Seizure Disorder

My daughter had 3 grand mal's in September. It was a very scary time. She was in the hospital for a week while they ran every test known to man. She is now on trileptal twice a day and getting weaned off of it as of 2 weeks ago. She has had normal EEG's since her episodes.

My youngest daughter has many health issues and underwent a bone marrow transplant when she was 10 months old. She was in the hospital for 4 months.

Having a child with many health issues is always very scary. I try to look at things from the postive point of view. I always think, that it could be worse and thank God everyday that's it's not. Everything happens for a reason and I have to truley believe that or I would go nuts. I do research on top of research on the best things for my youngest daughter (her disorder is a degenerative one). I find my comfort in knowledge. The more I know, the better prepared I am.

One a different note, my neighbors son has epilepsy. He started with seizures when he was 3 and now is 8. They can't seem to find the cause if the seizures and have tried all different meds. He has gone through a lot of tests. He lives a normal childhood, but is on many different meds.

We are also military. My husband has been in the AF for almost 19 years. It's hard to do these things when we are away from family, but then again, we don't have it the worst. Spending so much time at a Children's hospital really puts things into perspective.

If you need to vent please feel free to get in touch with me.

PS~ If your child is very seriously needing brain surgery I highly suggest you get in touch with Cook Children's hospital in Fort Worth, TX. They have a new iMRI machine that is the best for brain surgeries. They are the only children's hospital in the nation to have this machine.

My little brother had to have brain surgery some time ago - but it was for cancer, not seizures. For the record, his wife is due with their second child now.

Has your daughter's disorder been diagnosed - a name other than General Seizure Disorder?

I ask because at nearly 2 years old, it seems like there are several pediatric neurologists who could help get it under control with blended medication.

*prayers*
S.

I'm sorry that you and your family are going through this. I don't have any experience with health issues, other than my dh was seriously injured during his last deployment, so I know the strain of spending 3 loooooong months in another state away from our home and family, while he was hospitalized, but that's it. I did want to mention, for OPSEC reasons, I wouldn't give exact timelines as to when your dh is deploying though (you never know who's reading these messages.) Good luck sweety, and take care!

I am a single mother of two children that have many health issues. My daughter who is now 4 years old has been having seizures since she was 3 weeks old. She was finally diagnosed two years ago with epilipsey. If you want to talk you can email me at any time. My daughter has been through many pediatricians, neorologists, EEG test and five hospital stays now. After you get through the intial schock of your child having seizures you educate yourself with everything you possibly can get help from other moms that are there and learn your own childs way of seizures you will be the strongest woman and mommy there is! My x husband couldn't deal with it and I deal with it daily. I'm here if you need me at any time!
Hang in there it's a road that nobody wants to go down but, after you have been there it's easier for your child and your self to handle it better. I'll be praying for her and you as well! God Bless!

E. and Karon

I feel for you. I had a child that was born with seizures. They were never able to find out what caused them.He passed away at 9 months old.He had severe brain damage caused from the seizures.I can understand what you are going through.Just trust in God and pray for guidance and he will hear your prayers.This is a very hard thing to go through,But God gives us these babies because he knows that we are the best parents for them.And we can love them more than anybody else can.Just thank God for picking you to love and take care of your daughter.God Bless you and your child,and my prayers are with you. M.

I am here for you....this is our story.
We had Morgan and we wanted our children close together and 11 months later Ryan. Up untill then had never delt with anything major...Morgan had never got sick or had any real medical issues. When Ryan was born he had colic...when that went away he cried a lot. One day on a Sunday drive, Ryan slupped over started turning colors and shaking. We pulled over started cpr and when he seem stable, rushed over to the ER. They told me to take a seat? i though God Damn the nurse is nuts and made a scene untill Ryan was taken back. After CT,Catscan,MRI,blood work up, EKG and EEG nothing. The doctor explain Ryan had had a seizure and some kids have them and it prolly would not happen again. However, it did....a week later he had one then 24 hrs later another. I took him in to a Dr Gross and I ecided my son needed to see another. Ryan is 2years old, getting mild speach theropy from Easter Seals who recommeded a Dr J. Rotenberg...I will vouche for this doctor as personable and having a child with seizures also understanding. You see Ryan had also started having or we noticed he slept in odd patterns( He is two and babies normally wake up a lot the first year so might have not noticed untill he got older). Anyways, that was last year...its painful at times the medicine cause him to be wired but we are learning what dose works for Ryan ( fine balance between too much and not enough) He takes Topamax and clodine ( to sleep). The seizures have stoped but, seeing your child seize up makes any parent cry....so if you ever want to talk....need referals for doctors or orginzations...just email.....cause we have been there and living with it too

Hi M.,
This is so much more common than you know, people just don't talk about it. I am 34 years old, and no longer have seizures of any kind, haven't been on any medication in nearly a decade, and have normal MRI brain scans. In other words, I grew out of it. I have had a normal life, even when I was on the medication, which by the way really worked to control the seizures.
I have one 2-yr old child and another on the way. Your daughter can certainly have a normal life, please follow the advice of a good neurologist and also know that she is not defective in any way. Some hugely successful people in history have famously had seizure disorder and accomplished a great deal- like Julius Ceaser and Napoleon, for example. (And that was before the medications were available!) Good luck to you!

My 6 yr old had siezures old 10 months and grew out of them he had what they called grand mal seizures. he took medication for a couple years and they did lots of test which realy scared me but as they told me in the hospital when he was diagnosed he would probly grow out of them and he did. As for brain surgery none of my children had brain surgery but my newphew did around 2yrs he had a tumor covering the whole right side of his brain and he is fine still has to go for kat scans but he is 11 yrs old and you would know by looking at he that anything was ever wrong.