This morning we met with Dr Omar at Batson Specialty Clinic. He and his staff were sooo thorough! They asked a lot of history questions and examined her looking for anything that might stand out or remind them of another patient. The genetisist will determine whether or not she has a "syndrome" or genetic disorder. GOOD NEWS--He did not see any signs of any "syndrome" at this time!! But he feels as though she is still a complicated case of hypothyroidism. Both he and our endo believe that she was born this way even though she passed her newborn screening TSH Level. Both feel that the test was either performed too early for it to show up or the during the testing process there was an error. They feel with my autoimmune hypo-T that was not regulated during my pregnancy actually might have a lot to do with the malformation of her thyroid. So now we are pretty certain she went the first 6 months of her life with a critically high TSH level.
We are going to continue with our current plan, MRI next Friday (Oct 9), follow up with endo (Oct21), but we have added a few new things. She will be evaluated for First Steps on Tuesday to see what therapy services she will qualify for, and we are also going to see a Neurologist to determine what if any damage was done to her brain during the period when she had excess of TSH in her system. She will hopefully be able to assist with knowing more long term effects.
And for those who have been following her saga, we finally have a diagnosis for her chronic ear infections! She had streptoccocus and h influenza strand A harboring in her ear---YUCK i know! The bad part is that there are no FDA approved meds approved for a child her age. So we are now seeing the ENT for thorough cleanings (It is nasty!!!) and some antibiotics to hope the bacteria doesnt spread.
I know that this was kind of a boring post but I have had so many phone calls and emails letting us know that they are praying for Cohen and us and it means sooo much to me. This was the most efficient way to relay what is going on so far. Again, it really means so much to me all the kind words and prayers that have been sent our way. I will keep everyone posted as more things unfold!
I havent taken all my recent pics off my camera but i felt like if you made it through this post, you at least deserved a picture!