Zachary's Seizures

West Syndrome:

Zachary went to the hospital for an EEG because he's been having seizures the last week. While on the EEG he had a seizure and they had us see a neurologist right away. He's been diagnosed with West Syndrome which is basically infant epilepsy. He's scheduled to get a drug to treat it (it's not even available in the US right now... only Canada and Mexico), but the neurologist doctor has a NYC pharmacy that can import this drug legally.

He'll also be scheduled to get an MRI as well as genetic testing. This will take place some time soon. There could be something wrong with his brain and that is most likely what's causing the delayed development, so they're going to check out everything to cover all bases. It might also answer why he was born the way he was since all tests on mommy came back normal.

He also had an eye doctor appointment that discovered he is severely far-sighted and will have to wear 'baby-eyeglasses' every waking moment. This may also help improve his development since he'll be able to see toys close to his face now :)

Thank you for caring and for your prayers. It's been a rough time, but we believe in prayer to God and the healing power of our Lord and Savior Jesus Christ. While Renee, Zachary and I may be going through some tough times with this, we have hope in our Lord and faith in God... as Romans 8:28 tells us " And we know that all things work together for good to those who love God, to those who are the called according to His purpose."

We recorded one of these seizure sessions and uploaded it here so you can see what Zach's going through.
http://newsnate.blogspot.com

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• West
• Syndrome

[Vietmom2]

Please can you tell me how Zachary is doing now? We are facing this in our family now

[ncharlan]

@Vietmom2 Zachary is now close to 4 years old and completely seizure free. During the time of this video (he was 7 months old) we went through a failed trial of Sabril/Vigabatrin for three weeks. Our neurologist switched us to ACTH (Acthar gel) injections, one a day. After the sixth day, Zachary never had another seizure. We were blessed that this worked for him. It doesn't work for all kids, but it does work for some, and it makes the seizures stop completely.

[mirandaocasio]

did you know that at the time he was having a seizure

[ncharlan]

@mirandaocasio - We had no idea. That's why we recorded it. So that we could show the doctor proof of what we were seeing.

[Angenur]

oh it's true, it was the worst experience (i mean seizures). Chris still have local (occipital) epileptic activity on his EEG, but i see no seizures. Anyway doctors prescribed a Trileptal.

[ncharlan]

@Angenur I hope and pray the best outcome for your Chris!

[defygravity89]

no they can't, that's a myth. they can bite their tongue but its physically impossible to swallow your own tongue.

[hezzi85]

@chrislover99 yes typically you would think to rush the child to the hospital while having a seizure but to be honest it's best to sometimes have them wait it out until its over. Also taking a video of a child having a seizure is sometimes the best thing to do so then you can show a doctor/neurologist what kind of seizure your child is having.

[stephpeff040300]

@ncharlan Im so glad!! He is soo cute too! :(

[appaloneya]

aww poor baby! 

[ncharlan]

@Angenur Great to hear from you. Amazing what ACTH has done! We felt so blessed to have the seizures stopped. It was the worst experience feeling helpless while he was going through them.