Thursday, February 21, 2013

Affiliates in Action Conference & Adam Update

I am at the Down Syndrome Affiliates in Action national conference in Cincinnati. Affiliates in Action is an organization that connects and supports Down syndrome associations. I am heading up this year's Buddy Walk for our local Down syndrome association and have signed up for some sessions that I am really excited about.
This little guy came along for the ride. He was pretty popular at the opening reception tonight. I have someone helping me out with his care so I can actually pay attention to the speakers, but I am glad to have him close by.

Adam is spending some time with his favorite aunt.
His tics have returned, and we are trying a new antibiotic. I am frustrated, heartbroken, and confused. Our pediatrician is great to work with and is eager to learn along with us as we take this one day at a time. I am researching and sharing with her because the neurologist (who was great) does not believe antibiotics are helpful. He is good to respond to emails but does not need to see Adam and considers this a bend in the winding road to recovery.

We saw a tremendous difference once Adam started antibiotics and the PANDAS Network Website has a lot of information on the crucial role of antibiotics. I have been back in touch with a parent who's daughter was diagnosed & they also had to use different antibiotics because the immune system would get used to them quickly, and the tics would return.

The tics started up again two weeks ago and got a little worse each day until this week he was back to opening and closing his hands, tapping his shoulders, etc. It has not affected his thinking or communication yet, which I am so grateful for, but he is definitely not himself. It makes my heart ache.

Please say a prayer for this sweet big brother. Pray that we make the right decisions for him and that he will recover quickly and completely.


7 comments :

Jenny said...

Aw, I'm so sorry to hear the ticks have returned. Adam is in my prayers. I think that last picture is adorable!

teal915 said...

Sorry they are back. I know exactly how you feel. It's been a couple of months and our son still hasn't had any, so there is light at the end of the tunnel. Hang in there : )

Anna Theurer said...

Prayers for Adam. I cannot imagine how frustrated he is or how scared you are. {HUGS}

Ilisa Ailts said...

Wow, I am so sorry! I am feeling your frustrations and worry and aches.

Leah said...

Oh, no, April! Not sure how I missed this yesterday! I was actually going to call you today... I'll be praying for you all. Love you, friend!

Becky said...

I will definitely be praying...

Laura said...

We've been praying! Any updates on Adam?