[leorana]

Hi, i have never postd before but maybe someone can help me. I have a three year old daughter who had her first seizure in jan of 2005 she was about 4 months old they put her on tegratol and she still had break through one on feb 12 of 2005 they then weaned off tegratol and put her on phenobarbital with still another seizure n mar 12 and then on march 27 of 2005 that one was bad she had seized for 5 1/2 hours because they couldnt get an iv they flew her by helcopter to a childrens hospital at that time i lived in new jersey so they flew us to chop in philadelphia. they then put her on nueronton and phenobarbital and we stayed on that for two years with no seizures and then we weaned her off and we were seizure free for 2 years on meds and 9 months no meds, and then all of the sudden on jan 10 of 2008 she woke up that morning walking around dizzy she was running into walls, she was alert but i was concerned so i called 911 they gave her oxygen and she woke up a litte more her seizures are always the same she gets this dazed look and she turns very pale almost white looking and then her body starts to jerk. eveyonr of her seizures hs been different. i think that they initially called them simple complex seizures. on jan 10 of 2008 she clinically seized for 16 hours straight and thye put her on an eeg where it showed thatt she seized for 36 hours non stop. they put her into a penterbarbic coma
she was in the coma for 6 days now she is somewhat awake. they tried valproic acid also known as depocot but she then developed pancreatitis from it. they now have her on phenobarbital, topomax and clonazapam to treat her seizures they did a cat scan with normal results they last night did an mri and they found that she has a left mesial temporal sclerosis and that is treatable with surgery but down the road but there is one thing that doesnt add up for that theory being the only thing happening because the right side of her body doesnt want to move, they also tried to do a picc line and caused a blood clot because her central line has been in to long and they want to take it out so they took out the pcc line and redid the central line in the other leg.she is so out of it its crazy she looks like a little zombie i want my little girl back. i guess i have told you my story to try to get some answers some help i do not know what to do i havent slept in over two weeks and i think my i am losing my mind please help and p.s. dont mind my spelling thanks .

[Birdbomb]

leorana

I am so sorry your child has to go thru this. It must be so horrible for you! All I can offer you is ((((HUGS)))) and support as I have no experiance with seizures in children.

Having a child in the hospial for any proceedure is stressful enough, my son went thur 16 different surgeries to correct a birth defect so I can understand that kind of stress. I hope the doctors can help your child. Please take care of yourself too.

[duvabw]

I am so sorry for what your daughter is going through As a mom, I know how stressful this is for you.

My daughter has epilepsy (since birth). It is such a helpless feeling when it is your child. Thankfully, after many hospitalizations/medication adjustments etc, my daughter's seizures are now under control.

I wish I could say something to help you during this time. You and your daughter are in my thoughts and I Pray they are able to get things under control for her soon!

[LIZARD]

I'm so sorry... Watching your child go through any chronic illness is heartbreaking for any mother. My heart goes out to you.

I found a page that may be of help re info, although I didn't find it very encouraging: http://www.emedicine.com/radio/topic443.htm


Good luck to you, and kiss your precious girl for me.


LIZARD

[Porkette]

Hi,
Welcome to the forum (((Hugs))) to you and your daughter. I've had absence (petit mal) and complex partial seizures for 35 yrs. now. I started having seizures when I was 10 yrs. old in 1993 and 1994 I had brain surgery done to help reduce my seizures.
Just like your daughter I've taken tegretol, neurontin, phenobarbital, and topamax only to find that not a single drug worked for me. I found out I was drug resistant. I also found out that neurontin caused status seizures for me and they now have lawsuits on them because they have found that the drug can cause seizures for people who never had a seizure in their life. Once I got off the neurontin the status seizures stopped.
My advice to you is to be sure to take your daughter to an Epilepsy Center to see an Epileptologist (Dr. specializing in epilepsy). I've seen many different neuro. over the yrs. but I got the best help seeing an Epileptologist.
You might want to look into having your daughter start the ketogenic diet. This diet is low in carbs and protein and high in fat. The diet has been around for many yrs. and it builds ketones up in a persons body to help reduce if not stop seizures.
I had the same problem as your daughter with the hippocampus. Over the yrs. I had so many seizures that the right hippocampus shrunk and became hard so when they did surgery on me they removed the right hippocampus.
It sounds like you are keeping record of your daughters seizures which is a smart thing to do. I write down what time I have any seizures on a calendar and I make a note if I'm sick with a cold or virus because I often have more seizures when I'm sick. Also some people are affected when a low pressure comes there way. I've also noticed that hormones changing has been the biggest think that causes seizures for me along with stress and lack of sleep. By keeping record of your daughters seizures her neuro. may be able to see a pattern as to what days of the month or what time of the day/night she is more likely to have any seizures. Here's wishing you and your daughter only the best and May God Bless You Both!

Sue