Friday, October 10, 2008

All Children's Appointment


Well, I'm not really sure what to say about the appointment today. It seems like we hear pretty much the same thing over and over again, but now with a few twists in information. I am okay, not really sad, not overjoyed, just really overwhelmed with all of the new information.

I have to say that the appointment went well. The doctors, yes doctors, were very helpful and thorough - a much better experience than we had with Johns Hopkins. Isaiah was checked by 2 doctors as well as a fellow (or at least I think she was a fellow). At first, one doctor came in to get all of the information from me, and examined Isaiah. Then, Dr. Tang (one of 2 head specialists) came in along with the "fellow". They reviewed Isaiah's pictures (I took photos of a few of Isaiah's reactions, along with the ones from February/March), reviewed the files I took (including the biopsy and other labs), then sat down to have a chat.

We were told that Isaiah's IgE levels for environmental allergies (we'll get to the food part here in a bit) were extremely high. So high that they were 20 times that of a normal person with "normal" allergies - they were 700. His IgE levels for foods (according to the RAST testing that was done over 2 years ago) were rather high as well (again, many were off the charts). The environmental count was something that was not discussed with me before, because they were so concerned with the foods. So, I was astonished to hear that.

Dr. Tang told me that he wanted to repeat some tests before we move on with further testing (such as a bone marrow biopsy, etc.). He wants to make sure that they aren't missing anything before they do the biopsy. Again, the cutaneous form of mastocytosis was ruled out - the mast cells just aren't present in Isaiah's skin (apart from the TMEP episode in Feb./March). Some of the tests were for the usual - another RAST to check his IgE levels and another tryptase (which can tell us if he has too many mast cells present in his blood - not a definite answer for masto, but it can help if the tryptase is elevated). The last time Isaiah had a tryptase test, his level was high, so it's possible that it will be high again.

Dr. Tang also did a few other blood tests - he wants to make sure Isaiah's white blood count is within a normal range. This part scared me a little. Isaiah has been complaining so much of pain recently and his rashes are coming back (he has a rash around his mouth along with rashes popping up just about everywhere). Dr. Tang said that even though it's rare for children to have the associated leukemia (called mast cell leukemia) with systemic mastocytosis, he just wants to make sure. He also wants to make sure that all of this is not from some other kind of cancer/leukemia. He said that with systemic mastocytosis, there will be an increased risk of getting the associated mast cell leukemia as Isaiah gets older (usually in adulthood).

It's so scary to think that something could be hurting my baby that I can't see. Something I didn't even know was there. He hasn't been what you would call extremely sick (apart from the anaphylaxis episodes), but those are enough to warrant a little more searching as to why this keeps happening to Isaiah on a pretty much regular basis. They are also wondering why it seems to be getting worse (more severe) instead of staying the same or getting better.


Dr. Tang also said that Isaiah can be treated with a low dose of oral steroids to help ward off anaphylaxis. We were told (yet again) to make sure we wash our hands after touching anything Isaiah might be allergic to, wash Isaiah's hands often, wash our mouths and brush our teeth after eating foods Isaiah is allergic to, wash his clothes twice (once with the home-made laundry soap and once without), make sure there are no chemical residues in the bath tub (from cleaners), make sure pans and plates are clean and free of oils (really-really-really washed), stuff we have already been doing, but something that needed to be stressed yet again. He reinforced how sensitive Isaiah is to just about everything.


We were given yet another prescription for Isaiah - to make sure that some of his rashes aren't being caused by a virus he is just susceptible to (apparently, some forms of dermatitis or eczema can be caused by a virus). He will take that for 10 days, so at least it's not an on-going med. The steroid will come after next month's visit (we are going back in November).


Overall, I would say the hospital is very nice as well as the people. The friendly atmosphere is even made better by their decorations (they had a stuffed animal aquarium hanging above the info. desk and a room covered with a mural of dinosaurs to name a few). =0) Isaiah wasn't too happy in the dinosaur room - he was getting his blood taken there . . . and he was taken away from the Nintendo in the waiting room (I'm not a fan of him playing video games anyway). =0)


I'm not sure when the labs will come back - that wasn't really addressed (and Dr. Tang didn't speak English very well - nice accent, though). =0) All of the doctors were pleasant and talkative! =0) A completely different atmosphere from Johns Hopkins.


Anyway, I will let you know more a little later . . . when my brain settles and the labs return. I know that God has my little man in the palms of His hands and that God will carry him through all of this. Honestly, Isaiah's the most oblivious - he really thinks that this is "normal" life because he doesn't know any differently (except if he sees something other people are eating . . . and he wants to eat it too). As far as how this is affecting me . . . I remember something that a friend of mine was told while her son was going through a really tough time - just float. Honestly, I don't know what else to do. I could get upset and cry. I could scream. I could try to run away. But I just can't. Sure, I cry sometimes and seeing Isaiah go through all of this just gets to me. But I don't cry every night because I am still happy - every day God blesses me with Isaiah's existence is another day to rejoice! Every day is a gift. I'm not saying Isaiah's gonna die - I can't say that one way or the other and no one has put a time limit on his life (thank God!). But he is human and every day that we as humans live is a gift from God. Besides, God's there with us and He won't give us any more than we can handle - and He is faithful!


Well, that's enough of my novel for tonight . . . =0) Seriously, I could write more, but there is so much to say and so little space to write it (and I'm sure you wouldn't want to read it all either). =0) With that said, my brain is tired and so am I - it's late and Isaiah seems to be sleeping pretty well at the moment. Hopefully, my little man will get some much needed rest tonight (and I will take advantage of his restfulness to catch up on a bit of sleep as well). =0)


Blessings & good night!
Kelly

1 comment:

Carla said...

(((Hugs))) Kelly! That is a lot to take in. Gavin's Ige level is elevated but I dont remember the number by memory. We went through that when Gavin was diagnosed, and if it is any consolation almost all kids with masto only have masto--not some form of cancer. If he had mast cell leukemia, based on what I have read--you would know it. It is a very aggressive cancer and he doesnt look or act like he has a very aggressive type of cancer. I think this doctor is just being really thorough.

I am glad you had such kind doctors and that they are looking at every part of him.

Have they tested his gastrin level? Does he have problems related to excess stomach acid?

(((Hugs))) and keep trusting in the Lord. Remember he has a plan for you and your sweet family and He loves each of you more than anything.

Take Care,
Carla