[bradybunch6x1]

#1018774

Well it has been a long road. Ava had her surgery for the Cranio, and she has done wonderfull thus far. She was in the PICU for 24 hours, and in the hospital for 5 days. Not bad for a major brain surgery I would say. She did end up having to have two blood transfusions. She only had to have one when she had her previous surgery. Her eyes were swollen shut for 3 days. She got to be home just in time to be the best Christmas present ever.
We never did get to see the Peds Endo there, and haven’t seen one here either. The Peds Endo in Idaho was not in clinic while we were there. I didn’t follow threw with the Peds Endo here, as I have seen that they deal with mainly diabetic care, so I feel Ava would be out of there league really. Our Pediatric doc who is Ava’s primary is not really interested in finding a cause, and knows how I feel about letting any more genetic doctors close to her. He has said that since her growth hormones, and her thyroid levels are all normal he doesn’t believe that the Peds Endos could really help her. So then comes the question of weather we should even really bother with a Peds Endo at all. What will they do, check her thyroid which has been normal for over a year now? Or run more tests that we have already had done, that came back normal? I question weather we really need to be told what has caused all this in the first place, as it has already been a long road to hoe in the first place. Does she need a Peds Endo to tell us she has all these issues because of the Neonatal Graves, or would it be best to just let it all go? I’m sure there isn’t anyone in our shoes but wonder if you were what would you do? Would you bother with another doc, or just settle for what you know?
Valarie

[mamabear]

#1067008

I am sorry ava had to go through this!

Have they confirmed this is from pregnancy? if so and her labs are normal i’d settle for that.

if there is no confirmation that it’s from pregnancy then i’d yell till i got an answer for sure either way.

but that is just me and my mean old mamabear ways! LOL I dont like not knowing something so go with what your gut says and find out what you need to. If they can’t say yes for sure this is from pregnancy then continue to search till you get what you need.

[bradybunch6x1]

#1067009

Thank you for your response.
They did confirm this from pregnancy. I just keep running into the things some other doctors have said. If these dignoises that she has are going to stick around for life in her medical chart, then I wonder alot if I shouldn’t just go and get the Peds Endo to say yep this is all related, but that requires us traveling back to Idaho for that. I think your right, I should let it go.
The Genetics doctors have labled her as an undignoised syndrome….which I know isn’t the case, but they don’t know what they are doing when it comes to Neonatal Graves, they have said so themselves. I was actually told by the Genetics doctor here, that he didn’t know what Neonatal Graves was! I knew then they weren’t going to answer anything. We had seen two Genetics doctors, and had things sent off to the dysplasia registery(which are the top docs for dwarfism in the US)to have them all say well it could be a thyroid issue, and then turn around and say it probably wasn’t. I don’t know anymore, I just wonder what else they have missed.
Ava has so many things that I have read that is realated to the Neonatal Graves, and not one other Genetics test that has ever come back abnormal in any way. Matter of fact the OB specialist that I had while pregnant did Genetics tests on blood from the cord of the babies(which I didn’t even know about until after the test was already sent), to have every genetics test come back NORMAL. I just wonder how long the doctors are going to try having us running around in circles because they refuse to actually look at it all. So I guess I will let it go, because I know our Peds Doc is fine with the answers we already have.
Thanks for responding, it means alot, that someone else has a thought about it all.
Valarie

[Author]

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