Toby my 6 years old son

[Bmagdy80]

How to start ... well ill have to thank you all for all the support you provided through a one tough year my family had , well you might do not know but i was always arround reading your ffed backs , amazing stories and that gave us strength .... today i decided i will step forward and share my son story with you .... my son names Toby we live in Dubai .... got his first seizure july 2013 , we went to see a neuro and found out after EEG that my son has epilepsy ( partial epilepsy ) - frontal lobe on the right side ....... after that i will put what happened in points
1. The doctor put him on Keppra but the boys seizures increased up to 50 per day within a weak time

2. After 10 days the seziures went up to be 100 strike per day !!!!!

3. Admitted to the hospital and for a month doctors did all thier best to control the sizures

4. Till american doctor came on board he started traiptal in a very high dose 30 ml / day = 1800 mg / day ... that was sep 15

5. On sep 18 the 100 partial seziuers stoped [emoji4]

6. Fove honey moon month and on feb this year he got seziuers back again but max 2-3 per day and not every day lets say every 4-5 days

7. Seeking back the control the traiptal dose raised up to 45 ml / day = 2700 mg / day

8. No side effect yet
9. Seziuers will come 1 or two times every 4 to five days
10. Today we will start lamictal in addition to the triptal

The general advice we got is he has to be evaluated for surgery but we hate the idea

Any body went through similar story .... i would appriciate your feed back


Thanks

 

[George__]

:hugs:

 

[valeriedl]

I've had some of the same things happen with me but not all of them. I've had epilepsy for about 12 years. I mainly only have simple and partial seizures but I have a few tonic clonics thrown in there every so often.

I don't remember which medicines caused which problems but I know everyone can react differently to different medicines.

With my very first seizure, which was a tonic clonic, I was admitted to the hospital. I had to be put into a coma because by seizures wouldn't stop, one right after another. They couldn't get my seizures under control and given medicines through an IV.

When I was finally able to leave the hospital I was on several different meds for several different reasons. Some caused more seizures and some didn't do a thing. One of the worse side effects I had off of a med that I was on was that it made me so tired all I wanted to do was stay in bed and sleep. It took all my energy to just get out of bed to go to the bathroom. My parents had to make me take showers and force me to eat because I didn't want to. I was taken off that med fairly quickly.

Through they years I've gone through trying different dosages of medicines and combos of them trying to find out what works best.

The meds I'm on now are working pretty good. I also have a VNS implant because I'm unable to have surgery. On average I have around 7 seizures a month. I might go a week or two without a seizure then have one or more in the next few days. I can also have more than one in a day. Sometimes they are spread out through the whole month.

Over the last year I've started getting double/blurry vision and it's gotten worse and more frequent as the years gone on. My neuro said that it's a side effect of one of the meds I'm on so he's going to probably take me off of it and try something different.

So by doing this there's a good chance that I may have to go through the whole side effect and is it going to work process all over again.