Brextin's story

Brextin was a Mother's day baby - in 2007 - He was about 1 week late and was delivered by a V-BAC - I was so ready to have another child - and was excited to be able to have him on my chest as soon as he was delivered - however he had swallowed some fluid so he was taken from me right away to get suctioned out and then put on oxygen for about 2 hours - and we took home our son -

From day one we noticed he had a very poor suck - but he also had a terrible reflux - so I just assumed that was the reason why he didn't want to eat was because it kept coming up - when he was about 2 months old he was taken to the hospital for dehydration for not wanting to eat and from throwing up so much - we spent two weeks in a hospital - getting test after test done - but everything came up "normal" except he was labeled failure to thrive and having Microcephaly (smaller head than the norm) His test for reflux even came back up negative - even though he wasn't able to keep hardly any bottles down - and sometimes it would take him 1 hour to drink 4 ounces.

So once we arrived back home with no answers we went to a different hospital for a second opinion and they indicated that it appeared that our son Brextin could very easily have seizures at any given time - the brain pattern was there - but the seizures were not yet - so they sent us on our way - back home.

Then in about 1 month - my husband and myself thought we noticed him staying off into space and so we asked for another EEG study done and sure enough he was having seizures so he was placed on phenabarbital -

Then in about 1 month later we noticed some odd behavior and went back to the hospital where is was admitted again for another 24 hour EEG study and we found out he was seizuring all night - so he was airlifted the next day to a larger hospital - we still don't know why they didn't take action until the next day -

Then when we arrived to the hospital it was brought to our attention that we needed to up his dosage of phenobarbital but add topomax as well. We stayed for about 4 days in the hospital.

Then about one month later - I had noticed that Brextin was sleeping A LOT so we had another EEG done and it showed that he had hypsarrhythmia (abnormal, chaotic brain wave patterns) - which was a form of West Syndrome or Infantile Spasms (IS) the worst case of epilepsy in an infant. We have been told the worst outcome- that our son will not walk or talk. (We will not believe this - God does perform miracles - and we are hoping that one will be given to Brextin- he is just on his own time schedule)

Currently our son is 11 1/2 months old and functions around a 4 month level - he is unable to roll over, sit up, grab a toy for purpose or hug his mommy. Each day has been a struggle - just last month we did receive some good news the chaotic brain wave has disappeared - which is a bonus - our son is currently on the following medication - topamax, vigabitran, a reflux med, and a steroid for breathing problems.

We are scheduled in a couple of weeks for another eye exam - we have been told he is legally blind - he has optic nerve hypolashia (small optic nerve) and CVI - Cortical Vision Impairment. We will listen to the doctors but will only take the information with a grain of salt - God works in wonderful ways and I am praying for the best for our son and our family - he is an adorable child and I pray everything will turn out ok - thanks to the prayers of friends and relatives.

I am new to the blogging world and hope that this will help me cope as well - if anyone has any questions about Infantile Spasms - please contact me - I have meet some wonderful people through the yahoo list serve.