Sunday, March 21, 2010

One more mountain to climb

When we found out about Emma's diagnosis, we knew that the simple life that we had wanted to lead was going to take a different turn. Someone that I had met on an online board for families in similar situations had mentioned that this life is a rollercoaster ride. She wrote, "You can't have your ups without your downs." I never realized how true that was until this past week.

We are going through a bit of a rough patch as far as seizures are concerned. We were really praying that we would be in the lucky 20 percent of AS patients that did not have to battle seizures. Emma got a cold about three weeks ago. This seems to have triggered a batch of sleepless nights and days filled with seizures. She is having little episodes of "head drops". They only last a second and don't seem to alarm Emma at all. She goes right back to whatever activity she was doing before. It has put a bend in therapy because we are afraid she will fall and hit her head. I really wanted to keep her off of any medicine as long as I could. This has been a tough decision. We decided to go with the lesser of the two evils (or so we think). We did take her to the doctor today and will start seizure medicine this weekend.

We are keeping her on her GFCF diet. She seems to be doing great on it but one problem we found was that she is getting way to many starches. We have started a Low Glycemic Diet this week. Still pretty healthy and hopefully very positive results! Emma goes and sees a DAN doctor in a few weeks. Rumor has it; she is the same doctor that treated Jenny McCarthy's autistic son. We are also thinking of trying a chiropractor. I have been reading about some really positive results with children with disabilities.

Believe me I have my critics..... I know it sounds like a lot. I have to do these things. I feel like the moment that we stop trying is the moment that we are in a helpless situation. I don't want to look back 10 years from now and say, "only if we had tried the diet or the chiropractor".

A silver lining.... research is so encouraging! I sometimes don't fear the future because I know that the outcome is going to be great. I just got a really interesting article about a new study that will hopefully start drug trials in the near future. Reading about the road these scientists are on is so encouraging! It is truly fascinating what they have been able to find out and some of the things that they hope to try. I still have a lot of faith that the answer will be found!

I will keep you posted on the seizures. Right now, Emma needs your prayers! We know that this is just one of those down times on our rollercoaster ride. This to shall pass and we will pull through just fine.


  1. Sweet little Emma is in my thoughts and prayers. Hang in there! -Anita

  2. the blog looks great & the pictures of emma are so sweet! hope to see you guys soon!

  3. I'm relieved to hear the GFCF diet seems to be helping little Emma. ::hugs::

    Emma is very lucky to have an advocate like you doing all that you can for her.