Thursday, May 22, 2008

Biopsy Results



We finally know the biopsy results . . . it's not great news, but it's something we already knew. Isaiah was diagnosed with Mastocytosis. The biopsy showed increased levels of mast cells within the lymphocytic infiltrate, and the head dermatologist (along with her fellow - a doctor-in-traning) confirmed the diagnosis. The anaphylaxis episode was directly connected to the rash (which explains why it's better since the episode). Now we have a new list of things to avoid, and more testing ahead. Be cautious with exercise, extreme temperatures (such as heat and cold), cold and hot drinks, no motrin, no asprin . . . . the list goes on and on.



I have to say it's reassuring to finally, after 2 and a half years of this, have a diagnosis. It's also strange that Isaiah's first allergist, Dr. Hunter (in Frederick, MD in case you're interested), pre-diagnosed him on the second visit! It's just that the diagnosis doesn't offer much consolation. The diagnosis says that Isaiah will never outgrow this, it can't be cured, and that only the symptoms (mainly the outbreaks) can really be treated. However, I know what God's diagnosis is, and that God can "cure" him. We are being referred to more doctors, since this is way over the current doctors' heads (we will have a call about that later). I also have a stack of papers to read - research the dermatologist gave us. I have to say that when the fellow entered the room, I was a little freaked out - the fellow follows when there's something unusual going on that they need to learn about. =0)



So, now we wait. Wait to get in to the educational institutions, wait for a treatment plan, continue to wait for God to move, etc. =0) Well, I will spare you a novel, and say that I have to go - I have to start lunch for Isaiah. =0)

If you want to know a little more about mastocytosis, you can visit www.mastokids.org or http://www.tmsforacure.org/ .

Love & Blessings,

Kelly

1 comment:

Carla said...

Hi Kelly,
I found your blog in a google blog search for mastocytosis. My name is Carla, and I have two kids with mastocytosis....and drumroll....I have it too. I saw you live in Maryland if I read right. We are in southern california. I am a part of mastokids and tms. I just wanted to "introduce" myself and say Hi. I also am Christian, it was nice to see your faith reflected in your post on his diagnosis.

My blog spot is http://mastomama.blogspot.com/

I recently started it, there is about 11 posts so far. My old site that was from the last two years of trying to figure out what was wrong is www.caringbridge.org
Then the visit page is goreckikids.

Take Care,
Carla