Wednesday, May 7, 2014

Update on Haylee's PANDAS journey.

Haylee first showed signs of strep with a fever on Tuesday 3/18 (this is the first time she's had strep since the PANDAS incident). The next day I took her to the Dr but her throat swab showed up negative in the office. Her Dr sent it to the lab to double check and I got a call the following Monday that it turned out positive. So she was put on Biaxin again (3-23 thru 4/6) and had a follow up throat swab on 4/10 that was negative. She had her ASO Titer checked on 4/28 which cam back high (480). I've since learned that doesn't tell you much and getting her ASO Titer checked isn't necessary unless she is showing symptoms of PANDAS again.

I met with Dr Cook, a pediatric neurologist yesterday and although I didn't receive a lot of concrete answers about PANDAS (since it's a new disorder), I felt good about the appointment. He is one of the very few doctors in AZ who specializes (and believes) in PANDAS so I'm thankful I was able to talk to him. So basically we just wait to see if symptoms ever return. And even though it's been 7 weeks since the first sign of her latest strep infection, it's not too late for her to show symptoms. Also, even if symptoms don't appear this time, they still can the next time she has strep. He told me "she is a lucky girl" and that is when I almost lost it. I told him "I know, she had a lot of people praying for her and it was the worst weeks of my life." She is lucky her symptoms weren't more severe and she's lucky that antibiotics alone took away her symptoms. He did say reoccurrences are usually less severe but I am praying we never find out. 

So the plan if she gets strep again is to have the entire family swabbed. Anyone that is positive for strep will be put on an antibiotics. If the PANDAS symptoms ever return I will call Dr Cook and he will prescribe Haylee Biaxin along with ordering blood work. He also briefly went over other options of treatments if antibiotics alone don't cure it. Some of which were $10,000+ and insurance will not cover it. But again, I pray it never gets to that point because I pray Haylee will be protected against any further PANDAS symptoms. 

As always, we appreciate all the prayers on Haylee's behalf. We are forever grateful she was "lucky" and had a 100% recovery. We know it was all due to the power of prayer and being blessed by the ultimate Healer of all.

For now we will cherish Haylee's smiles and even her little sassy attitude. I'll take it any day over what we went through last fall!