Monday we had our follow up with Dr Dasouki, I think Bo finally has a "diagnosis" IPEX! A rare genetic disorder that causes, diabetes,growth hormone deficiency,thyroid problems,IGA deficiency,chronic diarrhea. This is Bo in a nut shell. This is just the Health part of his problems. When he was 10 months old we have heard about this syndrome but until he got worse they would wait to test for it. Well here we are, IPEX, It is so rare the only Place you can send the test to is Seattle children's. We will eventually go to Seattle to meet with this Dr, Not now because it is flu season,all of our DR are on the same page and have had a conference call with this Dr in Seattle to make sure we are all in this together. This is going to be a learning experience for all of us, but our genetics Dr is amazing as is all of our Dr, But they are learning as we are. I would suggest you don't google it, its not a great read! We have talked about this for a long time, but hearing it from the Dr mouth is different. For 1 month I have had a lump in my throat,I know we can get through this! It is just alittle shocking to hear it. We have lived with this we know what we are up against, he was in the hospital just last week. It is just hard hearing it. Everyone knows i suck at blogging and i will try to get better so everyone can stay up on Bo health, I didn't want this to be a "BO Medical" blog But its the only way I can keep up without saying it over and over. We had an MRI scheduled for Dec 28 but the Dr said it was ok if we put it off for a bit keep him out of the hospital as much as we can. Besides the prep work for an MRI sucks, he as to fast not fun. With that said we are working hard on some of his other issues, trying to get him stable on his feel and working on getting his left side stronger! I promise you it could be worse I know I have seen it. We are so lucky to have such an amazing family and friends it helps us so much! SO thank you for all of your continued prayers and support.
here is a link if your intrested. www.genetests.org and clickon reviews seach IPEX
