Some Good News!

We finally got some good news! The results from Presley's genetic tests came in and they were negative for Tuberous Sclerosis. Presley DOES NOT have TS!! The geneticist told us last month that even if the results came back negative it could be a false negative and she may still have TS but our neurologist said that because all of her tests came back clear, all of my tests came back clear and her genetic test was negative we could "officially close the book on TS"! This is fantastic news not only because we won't have to deal with the complications of TS, but because it means she could have a better outcome with the infantile spasms.

Usually infantile spasms are caused by some underlying condition, when a cause for IS is identified they are classified as symptomatic. When no cause can be identified the spasms are classified as idiopathic.

Symptomatic cases
-85% of cases have developmental delay
-15% have complete recovery

Idiopathic cases
-30% have developmental delay
-70% have complete recovery

As you can see by the numbers we're hoping they won't find a cause for the IS which would put her in the idiopathic category and her not having TS puts us in that category for now. It's strange because of course I want to know what is wrong with my baby and what is causing these seizures but we just have to hope they can't answer that question for us.

More good news came last week when we got to have a follow up EEG sooner than expected because Presley had gone a full week with no seizures. The EEG showed no hypsarrhythmia (abnormal brain wave) which is great news! The doctor said that her back brain showed slow brain waves which is abnormal so she went back to her mri but again didn't see anything. One of Presley's medicines is giving her high blood pressure so the Dr. said that could be a cause of the slower brain waves in that portion of her brain. I'm still a little cautious to really celebrate because the tried and true way to see the hypsarrhythmia on an EEG is when babies are asleep and Presley never fell asleep during this EEG. The Dr. said during her last EEG it showed hyps the entire time even before she fell asleep so she was very pleased with the improvement.  Even though I remain cautious today marks day 18 of being seizure free so that in itself is reason to celebrate.

Presley is still on five different medications so understandably she seems a little zoned out a lot of the time. We're in the process of weaning three of these and I am so looking forward to being done with them. Every time I drop her dosage I see her mood improve, she is now smiling much more and occasionally if we work at it we can get a little giggle out of her.

All in all we're doing well over here. It's hard to get back into any kind of routine when we can't bring Presley out in public due her compromised immune system. We try to go to the park or just get outside every day so I don't go crazy. I'm counting the days (23) until we're done with that medicine and we can have a life again.

I'll end this post with a pic of my sweet little girl, I wish it was a smiley picture but we'll have some of those soon enough. This is Feb 1st her 8 month bday. Compare it with her 7 month pic in the post below and you can really see how much her medicine has puffed up her face. Oh and that little bruise on her face is from a face plant into one of peyt's cars. =(.