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. That’s Bo in a nutshell. This is just the health part of his problems. When he was 10 months old we heard about this syndrome, but until he got worse they would wait to test for it. And now we are here: IPEX, It is so rare the only place you can send the test to is Seattle Children’s Hospital.
We will eventually go to Seattle to meet with this doctor but not now because it is flu season. All of our doctors are on the same page and have had a conference call with this doctor 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 doctor is amazing, as are all of our doctors, but they are learning along with us.
I would suggest you don’t Google IPEX, it’s not a great read! We have talked about this for a long time, but hearing it from the doctor’s mouth is different. For a month I have had a lump in my throat but I know we can get through this! It is just a little shocking to hear it. We have lived with this and we know what we are up against- Bo was in the hospital just last week. It is just hard hearing the diagnosis.
Everyone knows I suck at blogging but I will try to get better so everyone can stay up on Bo’s health. I didn’t want this to be a “Bo’s Medical” blog but it’s the only way I can keep everyone up-to-date without saying it over and over. We had an MRI scheduled for Dec 28 but the doctor said it was okay 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 has to fast and it’s not fun. With that said we are working hard on some of his other issues, trying to get him stable emotionally 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 amazing family and friends. It helps us so much! Thank you for all of your continued prayers and support.
Here is a link if you’re intrested. www.genetests.org, click on reviews, and search IPEX
