Tammie - posted on 01/23/2009 ( 6 moms have responded )
My son was diagnosed with CH at 8 days old and has been on synthroid ever since. I had to have a V/Q scan (radiation dye test to look for lung clots) at 25 weeks pregnant with him. The doctor said then he might have thyroid problems or cancer, but it was a life or death test for both of us. Everything turned out fine with that test. When he was born his lungs collasped and was in the NICU for 16 days. When they told me that he had CH it was not a real shock, but the doctors say that the V/Q scan had nothing to do with the CH.
He is now 2 1/2 years old and doing great. Maybe a little speech delayed, but growing fine. We recently moved from NJ to GA and I had to find a new peds. endocrinologist. My one in NJ has treated CH very successfully and had very strict rules on the days of his blood draws. We would get his levels checked before his daily dose was given and she would call me if we needed to adjust his meds dosage. My new endo does not do this. She takes the blood when ever and has a staff member leave messages on my answering machine when we need a dosage change.
I was wondering what everyone elses doctors do for blood draws? Do you have to get the blood drawn before the daily dose is given? I had my old endo talk to the new one about her treatment methods, but that has been pushed to the wayside. Pedatric endocrinologists are not easy to find and I don't want to upset our new one (we will have to deal with her for a long time), but at the same time I want the best treatment for my son. Any advice?