So, we went to Children's this week to speak with the specialist about DS1. He looked over his blood results from the pedi and suggested we do some more blood work because if that came back negative then the scope wouldn't be necessary. Obviously, we went that route instead, especially because he doesn't have any symptoms. The doctor even said if he's showing any symptoms then he'd probably take a more wait and see approach. He even said, "Let kids be kids!" and they don't need to run all kinds of test. I loved him!!
The blood work came back already and the doc called us first thing in the morning (I missed the call and he immediately called my husband's cell phone - again, love him!) - He's negative!! He's totally healthy! One of his levels is a little low but he said that might be his normal, nothing to worry about. I'm so happy! I feel bad putting the poor little guy through all this, but glad we don't have to worry anymore. He actually did great at the doctor too.
I can't say enough about the two doctors we saw. Even though they both thought he was probably healthy (aka crazy parents), they treated us with so much respect and eased our worries.
Thanks, ladies! We are happy!
@jaysonandkristin did you have to travel to Boston for DS1 or were you in the area then? The lobby of that place is like a reality check. My heart broke seeing some of those poor kids and families.
@jaysonandkristin did you have to travel to Boston for DS1 or were you in the area then? The lobby of that place is like a reality check. My heart broke seeing some of those poor kids and families.
No. We have never been. CHB is the Mecca for kids with DS1's birth defect. I participate in a housing project around CHB for our kids' families because the typical NICU stay is 90-180 days.
Re: Update to Celiac Disease