Monday, August 23, 2010

Pennies from heaven

Great news!
I took Tomas to his GI this morning and we talked about everything that happened with the last hospital stay and the hypoglycemia. Without any prompting from me he said it sounds like we need to test for a metabolic disorder. He said that just because Tomas has Down syndrome doesn't mean he can't have anything else, and that rare doesn't mean nonexistent. He said Tomas has too many symptoms to ignore, and it needs to be checked out. He said that all the data gathered at the hospital, and from previous tests, does not fit neatly into a dumping syndrome diagnosis. He said that it would be more rare for Tomas to have something causing neutropenia, something else causing hypoglycemia, something else causing his platelet dysfunction, and that if a child has been given that many different diagnosis then it is usually because the doctor is wrong. He even said that a metabolic disorder could have caused Tomas' gallstone. He said he needed to do some research and check his books so that he ordered the right tests. He told me to absolutely forget about the medication that the doctors sent home from the hospital and to leave Tomas on continuous feeds until we find out for sure what is going on. He said that the blood in his stomach could be from a clotting disorder that comes from the platelet dysfunction which comes from  - you guessed it  - a metabolic disorder. What it boils down to is that it is just time to take a look and see what we can see. Have I mentioned I love this doctor. He is the one who called from vacation when Tomas was having the blood sugar lows before he was admitted to the hospital. He said way back then that he didn't think it was dumping syndrome.
I was on cloud nine leaving his office. I was actually giddy with joy that someone was listening. That someone else wanted reasonable, logical answers. I tell you it was a high I have not felt in a long time.
Now you must all pray for me because I want to do something very much of this world. I so want to prove the other doctor - the national hypoglycemic expert - wrong. He is the one who told me that something went wrong with the first fasting study - he didn't know what - but something. His partner is the one who told me that metabolic disorders were not consistent with DS, and that testing for them would be looking outside of the DS diagnosis. They are bad feelings and very strong in me right now, and I pray that I can pray them away.
For the first time since May (when that nonspecific, interesting, atypical rash showed up) I feel like we are on the road to finding out what is wrong.
Now for another God's ways are not our ways: I was forced into this GI practice when our old GI office dropped our insurance last September. I blogged then that I knew it was a God thing but was still irritated that I had to find 9 specialists to replace all the ones we lost. Here I am almost a year later and the veil is lifted and the cloud has cleared. Tomas was meant to be at this practice, at this moment, for this reason. When will I ever learn????????


  1. What a great thing! It sounds so wonderful to find someone who seems to care and to really listen!

  2. That sounds like fabulous news - maybe leading to a 'real' diagnosis!!!

  3. This is the guy we've been praying for!!!!!!
    Tis is AWESOME news!!! I'm so excited!!!

  4. Oh I love it when doctors actually listen. Praise him!
    And our DS kido's end up with some pretty crazy diseases. I think they are just more prone to everything!

  5. Happy for your giddiness and praying for Tomas, as you begin this road to finding answers.Feels as if you can breathe a bit when you feel your are in the hands of someone who cares.Much like God,isn't it?

  6. wow, great when God leads you places. I will pray for your son and your family to get the answers you need. It's a great thing and hard to find a dr.who really wants to help. Hope you get answers you need :)