Friday, May 17, 2013

Update #4

Update #4
Well, we are still at the hospital for one more night. He is finishing up his 24hr EEG and we should be able to leave in the morning. We have talked extensively to the Hematologist and the Neurologist today. I don't think I have ever asked so many questions. I believe I have a good understanding of what is going on. With that being said, there is not yet a definitive answer to what's wrong with DS.

Here is what we now know. The MRI shows that DS has a small pool of blood at the back of his brain. Also, he most likely had a prior bleed in the same place. The bleeding has indented or pushed in that part of the brain (the missing part I was talking about) and caused it to scar. He also has a lot of calcium at the top of his brain which is probably old blood that turned to calcium. This bleed probably happened in the womb or during birth. No way to know for sure. That makes three bleeds in his brain.

The Hematologist also believes that the calcium deposits on the inside of his ventricles on his brain are also old blood. The Neurologist isn't yet sold on this idea though. He still wants to do genetic testing. However, he said that these are not tumors, which is what they would have to be, to be a genetic problem. Plus the likelihood of having two rare genetic disorders would basically make DS an anomaly.

The CMV test came back negative. And the toxoplasmosis came back negative. There has been no evidence of Rubella either. So the congenital infections are ruled out.

The smaller brain could still be within the normal range, based on what the doc is saying. The Neurologist said that the surface texture and grooves of the brain look normal and that we should not expect to see any major developmental problems.

The plan at this point is to get a port (internal central line) put into his chest so that we can preventively treat his Hemophilia three times a week. This will hopefully stop any bleeding and we could potentially qualify for Soc security, of which we would put into a future fund for DS.

So, after this emotional roller coaster, it seems that it might all be something we can handle. He will continue to take his seizure medicine for months if not longer. And we will monitor him to determine if he has any delays. But for right now we breath.

Thank you all so much for keeping us in your thoughts and prayers. I believe it helped. 

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