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Showing posts from January, 2013

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Hematology Results Are In!

I spoke with the nurse this morning and she said Dr. I wanted to monitor Buddy's blood cell counts.  The bone marrow biopsy is not necessary at this point!  Yay!  He was happy with the increase in Platelets and Neutrophils.  Great news!  He would like another CBC done in 3 months, then he'd like to see Buddy in 6 months.   The tests also showed he is not deficient in b12, he's not anemic and his SED rate (inflammatory markers) and other chemistries were normal.  He was also up 2-1/2 pounds since starting Operation Weight Gain on December 29th (4 weeks ago).  Dr. I didn't think the mild depression or sleep issues were anything concerning.  He thought the anxiety from having his world turned upside down is all that is causing it.  We'll work on relaxation techniques in the evening to see if we can get him in bed and asleep at a decent hour, which will help with his overall mood.  The sore tongue that Buddy complained about was nothing more than an accidental bite
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Now we wait...

Well, we don't really know much until the lab results are in on Monday. The hematologist, which we liked very well, wanted to run more blood work. He said if the neutrophils and platelets are lower, then he'd need to do a bone marrow biopsy to see if Buddy's blood factory was working properly. He will also be looking for anemia and b12 deficiency...and various other things. He said b12 deficiency is actually a serious thing so we're now hoping he doesn't have that. The doctor didn't think he had it because his RBC level was normal at his last draw. I should have some results to post on Monday... Waiting is boring. Not so boring when the office has an Xbox! Trying to be brave, but this part really gives Buddy anxiety.
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Celiac Genetic Panel Results & Hematology

We heard from Dr. L's nurse and we got great news... Miss Tootsie's genetic panel came back with the following results: low risk, lower than the general population. We are thrilled! That was exactly what we were hoping it would say. What a relief! Buddy's pathology & scope report look good. Again, no evidence of eosinophilic esophagitis, no h.pylori, no defects or lesions. Great news! But...Dr. L wants him to see the hematologist for his low white blood cell and platelet count. Here are his readings: It took me a few days to digest the news and to get up the nerve to research what could be causing this. One thing I came upon that doesn't seem too scary, and seems to fit, is B12 deficiency. Vitamin B12 Deficiency... •Common in those with celiac disease, bacterial overgrowth & in those using acid reducing drugs for a prolonged period. •Symptoms:  pale skin (√) sore tongue (√) easy bruising (when he was playing soccer) stomach up
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Proceeded with Endoscopy

I was hoping we wouldn't have to do another scope since Buddy was doing so well this past week, but his doctor thought we should, and I'm glad we did.  Dr. L said it showed gastritis (inflammation of the stomach) and inflammation of the lower 3rd of his esophagus.  His blood work is in, but the pathology results haven't been posted yet.  From what I can see on his online chart, his white blood cells, total neutrophils, and platelets are below the normal range.  Not sure what that means, if anything.  The good news is - he gained 2 pounds, the villi have grown back in his small intestine, and his celiac score is 5!!  Six months ago he had partial to subtotal villous loss (villi increase the surface area for the absorption of nutrients in small intestine)...and his celiac score was 56 (it should be under 19).  We should get the pathology results by Wednesday...hoping it's sooner, I'm not good at waiting! Dr. put Buddy on Carafate 4x a day to help heal the inflammat
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Big Changes This Week!

Wow!  We are seeing some big changes in our boy this week!  It's like the light switch has been turned on in his intestines and they are finally figuring out that food is a good thing.  At his appointment on the 28th, the dietician really stressed finding a milk substitute that works for him (for added fat & calories).  She suggested Hemp milk.  I ran it by the Parents of FructMal Kids group and they recommended the Pacific brand.  I ran to Fred Meyer to get some, but they were sold out so I grabbed some Tempt Unsweetened Vanilla hemp milk to see what he thought of the taste.  The first sip gave him the shivers and he said it would be okay in cereal, but he didn't really like it. The next day I had to run to Freddy's again for something else and saw that they had received a shipment of Pacific - perfect!  Buddy gave it a try and said it was really good.  He has been drinking about 8-12oz, four times a day! On Wednesday, another FructMal Mama (a friend I met
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