Update

I realized I haven't done a medical update on Presley in a while.

I finally started weaning the Vigabatrin in November but instead of the recommended 8 week wean schedule we were given I decided to turn it into a 16 week wean.......we're now on week 18=). I'll eventually get there. She was taking 4mls twice a day and we're down to .5mls twice a day, I'm just having trouble going from .5 to 0, I'm terrified!

We had another seizure scare in January so I stopped weaning and went to Oakland for another EEG. I thought I noticed some odd head movements as I was rocking her to sleep one night, immediately my heart starts racing and the panic sets in. I swear I have post traumatic stress disorder from this whole thing, I watch her like a hawk at all times and if she does any odd movement I freak out! The EEG came back normal, so this is the 3rd time I've panicked about odd movements which proved to be nothing. I hate to put her through these tests just because of my paranoia, but I guess that's just how it has to be.

After the EEG we walked over to Dr. Hayward's office to hear the results and to chat with her since we hadn't met with her since July. She told us Presley's EEG was completely normal, that we couldn't tell by her EEG if she was any more prone to seizures than any other typical kid. I was thrilled! Dr. Hayward is pretty negative but we were off to a pretty positive start. Well the positivity didn't last to long.....when Presley was first diagnosed we were told she had a 80-95% chance of mild to severe mental retardation, and that we wouldn't know the extent of that until she was around three years old. If at 3 years old she wasn't sitting, walking, talking, etc. she would likely be on the severe end of that spectrum. I wanted to know if since she was walking, talking and doing so well at 20 months old if that meant her prognosis would be better, would that drastically lower that initial percentage? Could I finally relax a little bit? Well the answer was a definite no. She said that percentage remained the same, that Presley could still have severe learning disabilities but we won't know about those until she is reading, writing, doing math, etc. just another "we'll wait and see" answer.

50% of the time Infantile Spasms will progress into another seizure disorder called Lennox-Gaustaut Syndrome (LGS). I purposely haven't done much research on this disorder I just know it's classified by multiple seizure types and developmental delays. I thought because Presley was doing so well we might be out of the woods for LGS, but Dr. Hayward let us know that wasn't the case, that she's still at risk for developing LGS and that we just have to "wait and see". She let us know that Presley will be most at risk for developing seizures at age 2 when febrile seizure risk peaks, again at ages 5,6, and 7 because of brain development, again at puberty because of hormonal changes and again during pregnancy. So to me that just translates to we'll be nervous wrecks the rest of our lives! This is never going away =(

Surprisingly though I didn't break down after that appointment. I just have an instict, a strong feeling that she's going to be ok. I don't care if she isn't the smartest kid in her class, if she has learning disabilities we'll deal with it and move forward. As long as my baby girl is happy and enjoying her life that is ALL that matters! I love her unconditionally with all of my heart and soul EXACTLY as she is.