Not what we were hoping for

[momofthree]

So, we took my seven year old in for EEG Video Monitoring. I have been under the impression that he had BRE and would outgrow it, it was mild and benign. Once his Keppra was out if his system he starting seizing, and lots of it. He had 4 generalized seizures, each one longer than the next, the last one was over 5 minutes and that was with two rounds of diastat and they were all in a about a 2.5 hour period, I truly thought they would never stop and my baby was lost. After that he had to partials where he was screaming and his arms were curled up. They gave him IV Keppra, about 600mg's in 15 minutes. An hour later in his postictal state he started vomiting and then luckily slept for about 10 hours. Other than the initial fear, they told me he does not have BRE and that because he generalized so quickly they can not 100% determine where the seizure has started. Two doctors have told me two different things, one thinks it is temperol lobe the other frontal. I should mention these docs were fellows, not attendings and not his regular doc who was not on call this holiday weekend. I am terrified, I don't know the difference between the two or does it even matter. Will my baby be able ot have a normal life? He is now on 600 mgs of Keppra and he has not had a seizure since, but can that change in an instant? Any advice would be great, I am truly horrified and don't feel I will ever get rid of the pit in my stomach, it is like a weight holding me down! Thanks for your help.

 

[Nakamova]

I'm so sorry for what you and your family are going through. You and your baby are in my thoughts. It sounds like you should try and see a pediatric neurologist as soon as possible so that you can get some more reliable information on what's going on and what different diagnoses might mean.

 

[Anna01]

I'm really sorry to hear about your experience. I can only imagine what you must be feeling. I hope that your little boy starts feeling better really soon. In regard to if he will be able to have a normal life - I once had 5 generalized seizures in less than 24 hours and another 2 within the next two days. Since that time I have often gone over a year between seizures and am now 2.5 years seizure free at the age of 30. I lead a very normal life. I know the medicine isn't as successful for everyone with epilepsy, but there is definitely lots of hope.

 

[survivor]

Dont panic dear! U r the mother, u have to be really strong. The first thing needed to do is to get the right doctor, and right means RIGHT. If once u get attached to a wrong doc u will be wasting time, money and emotions!! Its not clear from ur post that whats ur baby's age! All will be fine! Give some time to the situation, baby will be all well after treatment. But....................yes u be calm and patient, ur baby needs u desperately!

 

[momofthree]

Thank you so much for your support. @Anna, it is great to hear that you are basically seizure free and I am assuming live a successful, happy life. It does give me hope. @Dr. Agrawal, thank you for the words of wisdom, I do agree that the right doc is needed, I think we are in good hands. My son, he is 7, sees a doctor at NYU Epilepsy Center, it is run by Dr.Divinsky and he has an awesome reputation. I read so my horror stories on this forum that it is terrifying, I want to be educated but it can be scary as well. As they say "ignorance is bliss". BTW, my son takes Keppra and he has responded very well but there are side effects, hoping they get less and less, we don't want to change since it is working.

 

[Endless]

Mom,

How scary that must have been for you and your little boy. I'm so sorry you had to go through it.

knowing where the seizure started is important if surgery is an option that your doctors are presenting to you. otherwise, I think choosing meds is done on the basis of type of seizure, not necesarily where they start. Could someone will chime in here who has more specific knowlege?

 

[survivor]

Dear momof three! its not wisdom I suppose, it is EXPERIENCE! I kept shuttling between doctors in the early years of my life and had worst things happening to me. My parents chose the best doctor they knew for me but MONEY is the thing which some doctors need. They treat u as an experimental animal and gain experience on the cost of ur health. I, myself, said bye to my doctor after asking him many many things, like............................... why i m getting attacks even after medication, why I cant have food, Why and why and why. I was small then but I took a stand and said in front of all the patients, my parents and the doctors that i would not come again to that place. No need to mention that i was in all tears and loosing all hope. But then after changing the doctor i started living, feeling and smiling. Thats it!! So a gud doc is a must! I do hope and pray for all my friends that they get gud medical help and advice.

 

[Jfpinell]

Will my baby be able to have a normal life? Thanks for your help.

I know this is hard to understand given what we're so used to being told for so long now, but the trick is to find out what is throwing his body out of balance. What is he eating? I mean, take a look at EVERYTHING you're giving him. The way we are bombarded by ads today, we start messing up our systems basically from the day we're born: We so often have it in our mind that some dried powder sitting on the store shelf is just as every bit as good for our babies as breast feeding, we are led to believe that canned baby "food" (notice the quotes) packed with no doubt so many preservatives and artificial what-not won't hurt our babie's underdeveloped immune system, we're told that "food" processed so much, all the benificial nutrients are destroyed, but yet all the synthetic or lab-produced vitamins are every darn bit as good as what Mother Nature gave us (man's ego and pride at work yet again). We're taught that "if the FDA says some drug or whatever is safe, it must be". We're brainwashed into thinking that "shots" are the best thing since sliced bread to keep our kids "safe" (go take a look at what's actually in ever vial of "good" vaccine -you'd never think of letting another needle touch you!) On and on I could go!
All this is breaking down our bodies from what Mother Nature had originally given to us. As I said a day ago in another post: If you wouldn't eat something, why on earth would it be any safer putting it on your skin or in a vein? Start taking a good hards look at everything he's eating and being put on his skin. That's the BEST place to start!