I'm New... 8 yr old son just diagnosed 2 weeks ago...

[sunburst_kat]

Hello everyone,

I would like to interduce myself I am Kathy, I am a mother to two young sons one 12 yrs old and one 8 yrs old. My 8 yr old has just been diagnosed two weeks ago with epilepsy. He has grand-mal seizures. This is all new to our family and has been very hard because we are not very well educated on this disorder completely yet. It is still very scary and traumatizing for me and my oldest son to see our little Cory go through this and not be able to help him. My husband travels on business alot so this is very hard on him also not knowing if something will happen while he is gone on business.

So any comments or advise you can share with me will be very welcomed!

Let me tell you a little bit about our little sunshine. He had his first feberal seziure when he was 5 yrs old and never had another one till March of this yr. He had one at the end of March and then did not have another till the beginning of May (this month). After he had his third seziure and the doctor really telling us he NEEDS the meds to control the seizures the Nuro put him on 500mg of Depakote a day well for week he seemed like the meds was doing ok with his body we did not see any major side affects till last Wendsday (May 16). I pick him and his brother up from school and off to Target we went for some shopping. He seemed like he was doing pretty good till he told me he needed to sit down for a moment, when I looked at him I could see that he was not ok he had that blank look in his eyes but I still did not think it was a seizure at first because he has NEVER had a aura before the seziure came on in th past. So I walked over to lift him and could feel his body stiffing so I layed him down on his side and thought ok I will stay calm and just let his seiure pass and I will take him home well before I knew it he started vomiting massive vomiting and gushing blood out his nose I was so scared I have NEVER seen him have a seiuzure like this ever before! This seziure took the longest it has ever taken him to come back to a "normal" state of mind. I could tell right away something awful was a wrong with him though when he started breathing again I could tell he was having alot of trouble breathing..it was very shallow..O' my was a so scared. when we got to the hospital and they did a chest X-ray they told me right away that we need to be at the Childrens hospital so they had a EMS come pick us up and take us there. My little Guy spent one night in ICU and one in the normal childrens room. He was able to come home but is taking a strong antibotic for the ammonia he had from the asperations and the Nuro increased his Depakote dose to 750mg daily now. He has had a few side affects so far. Also I am now seeing him have small peti-mal looking seziures several times a day now since starting the 750mg Depakote daily now.

So please if there are any parents that can give me incouragement and share thier storys with me please do so.

God Bless Everyone that took the time to read my long story! I feel so much better now since getting that out !!!

Best Regards,

Kathy

 

[Bernard]

Hi Kathy, welcome to the forum. :hello:

I remember when I was first really confronted with Stacy's grand mal seizures. It was really tough for me to come to grips with being powerless. I've always been a take charge, type-A person and it's humbling to be faced with a situation where you really can't do anything but watch and wait.

When her seizures were out of control - grand mal once a week, it was a really dark time. The anxiety and worry was extremely stressful. There really isn't much that helps calm those nerves except an epiphany that "que sera, sera". For me, I realized that if a seizure was going to come, and whatever consequences followed, there wasn't anything I could do about it, so I might as well live in the moment. No point in letting what might be ruin what is if you will. All we can do is respond as best we are able when the time comes.

Fortunately for us, Stacy has managed to regain control except for the occasional breakthrough seizures and life is much more relaxed for us.

Stacy did not tolerate Depakote well at all. It turned her into a zombie. But, everyone reacts to AEDs differently. Perhaps he would tolerate a different drug better. You might ask his neuro about other options if the side effects don't diminish or are really bothersome.