Monday, Monday

Source:  Monday, Monday    Tag:  transient myeloproliferative disorder
Today was Tomas' BIG immunology appt. We waited 3 months for it. The doctor took a lot of time going over his history and ordered a tremendous amount of labwork. So I was satisfied as far as that goes.

But here's the thing that irked me. When she first came in she told me she had a lot of DS kids and that there were any number of immunology disorders that can go along with Downs. Ok, great - she has experience with DS kids. Then later during her exam she asked me if he was walking yet. No. How about crawling? No. Average age for DS kids to walk is 24 months. Tomas is 20 months old and has major medical issues along with the DS.

Next question - What does he say?
Say, what do you mean say?
What words does he say?

None - are you kidding me? - Ok, define a LOT of DS kids because you are acting like this is the first one you've examined.

That part unnerved me a bit, but as long as she has her specialty nailed I'm ok with it. Next up the lab work. He needs another 22 mls today, after 23 were drawn on Thursday. That makes 1 1/2 oz of blood in 5 days. I was just waiting for the doc to tell me he's anemic. Well, duh!

Afternoon brings the call form pedi to go over some of the labs. His liver enzymes are still elevated but 2 are slightly better then the other day, one is worse. Also his ANC has dropped again way down to 690.

My family is supposed to go on vacation in 3 days. We were waiting for the liver labs before I knew for sure whether Tomas and I could go. Those came back decent enough, but now pedi wants me to call hem/onc to get the ok from her since his ANC is down.

Also, now pedi doesn't think MRI is necessary, wants to go straight to the biopsy. I am waiting on GI to call to see what he says. Everything is in a very confused state right now.

The rest of the immunology panel should take 1-2 weeks to come back. I did find out that his immune system is much more compromised than I had thought. His IgM and IgG antibodies are low, which I knew, but his Igm are only at 50% of what they should be. IgM are the initial fighter cells in the body, IgG are disease specific. So between the low ANC and very low IgM it is no wonder he is sick all the time.