Ethan Ethan Ethan... Genetic disorder???

Ethan had another antibody (IVIG) infusion today, he did so awesome. The poor guy had 2 IVs blow but the 3rd one stuck. We also met with Rheum today and have a whole new idea for a diagnosis.... Collagen Deficiency (http://en.wikipedia.org/wiki/Connective_tissue_disease). Yeah a whole new ball game which became absolutely terrifying once I started reading. Ok, so not all diseases associated with this are scary but the one that I thought fit Ethan was (http://www.ncbi.nlm.nih.gov/books/NBK1494/). Now I could be completely wrong and I should probably stop researching. We see Nephrology and Rheum again in a month. In the meantime they did the blood draw today for the DNA testing. 

Ethan Update

All we wanted was the smallest of and answers to help with a diagnosis. I hate to ever think we have put Ethan through another surgery that was not helpful. Now that is me just being mad that the kidney biopsy did not offer something helpful. However it did tell us things he did not have which have only added to the frustration. Straight from the Nephrologists mouth... 

"1. No antibody or immune disease. Thus, nothing that we need to up his cellcept of prednisone for. This is good and we had to know this. 2. The parts of the biopsy normally affected by Alport were almost normal. I do not think we can say he does not have it based in this --partly because changes build up with time.However, even without the concern for Alport, I needed toknow that he did not need more immune medication and would have biopsied him. There is a genetic test we could send to screen his DNA for Alports as well. We could draw the blood on any of the days he is here for an infusion."

So DNA testing is what we will do and Ethan has an infusion Monday we will get the blood drawn then. Side note: Ethan has become a super hero at getting poked, really super proud of him! I have reached out to his Rheum to see if there is any additional DNA testing we can do for him end as well. Ideally that will provide some kind of answer (for crying out loud please even the smallest of answers). 

We did also hear back from Pulmonary on the bronch and Ethan does have an active bleed into his lungs and has been bleeding. They were waiting for the kidney biopsy results to determine what, if any, action to take on this. We see out primary doc, which is Rheum, on Monday after Ethan's infusion. 

Heavenly Father, watch with us over your child, and grant that he may be restored to that perfect health which it is yours alone to givem through Jesus Christ our Lord. Amen.