Monday, November 18, 2013

A summary of the next few months

On November 15, approximately 2 months after Keean was discharged from Children's, I called the lab once again to get the lab results to the AIE (AutoImmune Enteropathy).  I figured I would call and get the typical...."NOT YET" response that I was so used to, but to my surprise, the results were in and they were negative!!!!!!!!!  This was great news....but when I spoke with our GI doc she said this test can have a false negative. AWESOME!  I spoke with other parents of children with AIE and some of them told me the same thing.  Their kids had all the symptoms of AIE, but tested being they were presenting as if they had it that was how they were treated.  This is exactly what our doctor decided to do too.  Treat Keean as if he had it and if he responded GREAT....if not...we try something else.
We got blood test results back  from the Immunologist and it showed us that Keean was not responding to his immunizations.  They informed us this could be because of an immune deficiency or it could be because he was so malnourished when he first got his immunizations that they didn't "take".  We would have to re-do shots again when he was 18 months and see what happens. 
The Immunologist we saw did a lot of other blood work that all came back normal and referred us to a geneticist.  The Geneticist would test Keean for any genetic abnormalities and ensure he didn't have any chromosomal disorders.  Because of his low muscle tone and big head they wanted to ensure that they weren't missing something there. Keean had blood drawn from them as well.  This blood work also came back normal and they recommended an MRI and referred us to a Neurologist to ensure we weren't missing something there. 
Keean came down with an ear infection December 19, 2011 and was given an antibiotic.  He had a horrible reaction to this and it landed us in the hospital for a few days.  He lost a bunch of weight and became extremely dehydrated.  Because of this, our GI doctor referred us to an ENT to talk about placing tubes in his ears.  She wanted to ensure that if he were to have another ear infection we had a different route to treat him instead of giving him an oral antibiotic they wanted to treat it directly to his ear drum. 
So, February 27, 2011, Keean was put under again. He had tubes placed in his ears, an MRI another endoscopy to see if there were any changes in his intestines and a bunch of blood drawn for the immunologist.  Everything went great.  His MRI came back normal and so did the other blood work for the immunologist.  This was great news, but we were still at a loss for answers.
Because Keean continued to cycle and have good months and bad months and not gain weight well, our GI doctor referred us to the Children's Hospital in Cincinnati.  Some doctors call it the "Mecca" of the GI world.  We were able to get out there July of 2012.  We originally were going to take the 14 hour road trip there, but ended up getting connected to "Angel Flight" an organization where private pilots offer to fly people for medical reasons to their appointments for free.  It was an amazing service and we got to fly in 2 private planes to Cincinnati for a few days for MORE testing. 
That trip could have it's own blog really.  It was quite the experience!  Thankfully we have awesome friends and got home in one piece and nothing new was learned from our trip out there.  I was just glad we were given the chance to get there to rule more things out and to feel confident that the team of doctors we already had weren't missing anything.  The picture on the right if a picture of one of the planes that got us to Cincinnati.
Keean had times where he would go months without gaining weight and began screaming in pain when he would stool.  He was put on a medication for this which helped for awhile thankfully.  It was really hard to watch him shake and scream and sweat every time he had to go to the bathroom.
In October of 2012, Keean had another biopsy of his intestines.  The results showed "remarkable improvement" of his villi which could possibly qualify for 2 of the best words I have ever heard anyone say.  Keean did, however, continue with his cycles of doing really well and then cycling into puking, watery stool, losing weight, and not sleeping well.......because of this, our pediatrician from home referred us to Rochester Mayo Clinic to see if they could help us with any new ideas.
We traveled down there for a few days at the end of November, 2012 and were surrounded by specialists.  We saw a neurologist, immunologist, geneticist, gastroenterologist and a pediatrician.  The geneticist was the only one who wanted to run more tests.  All of the other specialists thought the team we already had looked at everything they would have which was reassuring.  They sent us home after taking the blood for the geneticist and told us they would call us with any results.  So, we went home to do some more waiting. 

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