Mathieu update been awhile

[Guest guest]

First I want to tell all of you, I have been reading your pains and trials

as well as some of your good news. For those of you in turmoil, I hope your

strength gets you thru when the answers aren't what you want or aren't

fullfilling the questions at hand. To those of you that have met the

challanges and have passed them, " always remember that YOU CAN get thru

anything. " You always have these groups to get you thru no matter what.

I have been to Rheumatology recently. He had some good insight for us

regarding Mathieu's frequent fever episodes. Has anyone been diagnosed with

FMF, Familial Mediteranean Fever? They are doing a series of genetics tests

to see if he has a gene defect causing the symptoms he has had. The two the

doctor is really focused on is HIDS (Hyper-IgD Syndrome, and TRAPS,

(TNFRS1A). The good news is if he is one of these syndromes; there is a

pill or an injection that can be given to help prevent his body from having

his " autoimmune wars in his body. "

We have also been to GI again. His calorie intake was over 1556 calories a

day without counting pediasure. So, we can consider he is getting over 2000

calories a day including the two drinks a day he was taking. (I stopped them

because I wasn't seeing a change in his growth) WOW, thats alot of eating

for a 16 month old. He has gained some weight, and although he isn't where

we would like him to be based on his intake, I'll take each ounce he gains.

I think his good eating has kept us away form tube feedsin ourselves. Just

going a day without eating for him, he loses a pound, and his metabolism

burns high. The GI doc is also looking at IBD again, (Crohn's or ulcerative

colitis) due to his high sed rate and C-reactive protein level, and anemia.

We are doing another SED rate to see where he is at now. If this one is

high, we will do the IBD series tests. The SED rate as I have bveen told

isn't fool proof. It can mearly mean nothing. He does have recurring

diarrhea epsidoes, sometimes with fever and sometimes without.

We also went to Endocrinology this past week. He wants us to come back for

anoher height check in June. We will do another Somatomedin check at that

time, and determine if we need to do the Stimulation test. I am a bit

nervous about that procedure, as I have a frioend that just went thur it

with her 9 year old. The procedure is done in the PICU, 4 hour test. They

pump the body with Glucagon and put the body in stress mode. Then, they

test the pituatary's response to the glucagon and measure the hormone

relaeasd. Meanwhile the body is in slight distress becasue it is working

overtime to digest the sugar. Has anyone done the test with a really young

child before? I think what we are going to do is just watch Mathieu on the

growth chart. In the end that is the true tell tale sign if he will need

growth hormone, as well as his bone-age. Right now, we are more worried

about the episodic high fevers, anemia, enlarged spleen, and liver that

recently occured. He has plenty of time to receive GH if he needs it.

We'll I guess that sums up our month. He did have another fever episode

this past week. Lasting 3 days 105 hardcore. I wish I knew why he has

them, but hopefully we are getting closer. Th e good news was he didn't

lose alot of weight when he had his last fever episode.

Jay

Mathieu 16 1/2 months 19 pounds Yeah!!! 28 inches