Sunday, July 12, 2009

Busy, Busy

We go back to see Dr. Halabi tomorrow in Peoria. Looking forward to this visit. I am going to push for referral to the Immunology Center in Wisconsin. There are Immunologists in Peoria and Chicago, but not the type we need. They deal with asthma and allergies. I don't think what is going on here is a simple case of allergies - although it would not surprise me if he had them. I did - horrible ones. Still do, but not to the extent that I once did.

Christopher is showing all the signs and symptoms of Celiac disease. In fact, we treat him as if he does have it. However, he has never been exposed to the gluten (wheat) that causes the sensitivity (Celiac is NOT an allergy). He has been tested for it over and over - biopsies, blood work, and genetics. He does not have it, at this point. He could very well develop it later, but that is a different issue.

Anyway, the symptoms Christopher has are why we left Peoria and drove to Chicago in the first place. Well, that and the surgery suggested in Peoria. Dr. Guandolini in Chicago is one of the world's experts on Celiac. Christopher does not have it. So, we (Gi in Peoria and WI, and myself) searched for things that mock Celiac. The only thing that kept coming up is CVID, or Common Variable Immuno Deficiency. This is the Immune disorder that we have been saying Christopher had all along. Some docs won't test for it because he does not have the "right" number of pneumonia's, etc. per year. This is where the quarantine kind of shoots us in the foot.

There are very few treatments for it, outside of quarantine. There are I.V. therapies that can be done, but we have two problems. The first is the fact that Christopher has Down syndrome. That extra chromosome can really mess things up sometimes. The simplest way to put it is that the I.V. therapies are basically an immune system transfusion - just like a blood transfusion. If your body doesn't make blood cells, or in this case an immune system, you would have to get a transfusion on a regular basis to replace the cells that naturally die off. In Christopher's case, because he has the extra chromosome throughout every cell in his body, this infusion can cause a system reactions. Sort-of like rejecting an organ - not good. Also, they would have to place an I.V. each time he had a transfusion (about once a month). That doesn't sound bad, except he has no veins left - or very few. The very fact that he has an immune disorder rules out putting in a PICC line or hickman that is semi-permanent. Too much room for infection, and really, he has never HAD a line that he didn't get infection in. The other treatment is a bone marrow transplant. Same issues. Wisconsin is the only place around doing BMT's on children with DS for this sort of thing. Luckily, we already get services at that hospital.

This past week was full of Mommy's doctor visits. Had a colonoscopy on Wednesday - fun, fun. Really, it wasn't too bad. Gotta love conscious sedation. I don't remember a stinking thing that went on, but woke up refreshed. Not groggy. The best 2 hours of sleep I have had in 5 years! LOL! Got a clean bill of health, no polyps - nothing.

Thursday was not fun. I have been having this trouble with my ear/jaw/glands on the left side of my face. This has been going on since about Feb. I thought it was an abscessed tooth, but that did not turn out to be the case. I have arthritis and TMJ syndrome in my jaw! It has caused permanent nerve damage in my face/sinus/teeth/jaw area, and the swelling was bad enough that it has moved my teeth. Unfortunately, there is not much that can be done for this. I have to get a bite plate/retainer thing to wear when I "sleep" - whenever THAT is. The doc gave me a shot of cortisone right in that TMJ joint (the jaw joint by your ear). I told him it was a good thing I had gone to the bathroom before seeing him, or we would have had a problem. That HURT! I will have to be pretty desperate to do it again.

We are starting in on getting organized for the Buddy Walk. This year, the Buddy Walk is on Saturday, October 24 in Champaign. Please let me know if you would be interested in walking with us or sponsoring "Christopher's Cowpokes". We are sending out letters for Corporate sponsors and donations for raffle prizes. If you have any ideas or your company would like to do either, let us know.

Wednesday is also the last day to order "I'm Little Man's Buddy" bracelets. See previous post for all of the info.

I think this is it for now. I will update after the doctor tomorrow. Hugs!

Steph

1 Comments:

Blogger Beverly said...

hope everything goes well!

July 12, 2009 at 10:01 PM  

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