We received a phone call yesterday that changed our plan of attack for treating O's hypothyroidism. The pediatric endocrinologist at Devos Children's Hospital wanted to see her today! This doctor has a special interest in hypothyroidism and has many patients with Down syndrome.
Through God's grace, O handled the car ride wonderfully. She usually does horribly in the car. Praise God!
We hit the road at 8 am and were home by 1 pm. A whirlwind trip!
The pediatric endocrinologist confirmed what was suspected, that O has hypothyroidism. He doesn't think it was congenital, but the bloodwork from the NICU is somewhat inconclusive on that point. We will start the medication tomorrow and follow up with bloodwork in 1 mos. Sounds like we can begin to see somethings, such as the overwhelming fatigue, improve in as little as 2-5 days. He will continue to be O's endocrinologist for the time being. We will go back to see him in 4 months.
The doctor was great. Even though they were squeezing us in, he and the senior resident took tons of time to review all the records, etc. and to do a thorough physical exam. They were great at educating us and answering all our questions and concerns. While the diagnosis and treatment plan did not change (we didn't expect it to), we were comforted knowing that everything was carefully considered and that a quick diagnosis wasn't made based on only a brief phone consult with an endocrinologist and some lab results. It gives us far more confidence that we doing the right thing for O. Our pediatrician handled this so very well! She said the right thing, apparently, to get O into see the specialist so incredibly quickly!
Thyroid problems effect about 50% of all people with Down syndrome before they reach the age of 20. Very common. Treatment typically goes very well.
We are blessed to have found it early before it would have much time to slow her cognitive development.
The doctor said that pediatricians cringe when someone says that they have a good baby who seldom cries. He says that usually indicates an unhealthy baby. O has gone from being a colicky baby to being a good baby who seldom cries. Not a good sign. So, we may hear more crying from our healthy baby soon! And she should sleep less than she has been sleeping. It will be interesting! :-)