Thursday, May 21, 2009

Matthew Faces FTT (Again)

Our follow up for Matt's lymph node turned into a bit more! I have a lot of questions for my family doctor since we will see him before anyone else. So, let me fill you in on what we know and such.

Matt's back down to 28 lbs. I knew that the reading at 30 lbs was because they had him wearing a coat. So, I asked about it. I was asked if I ever heard the results from his bone age study. I was told everything was normal based on labs but never heard about the bone age. The NP was who gave me the information I heard. The doctor checked on the results and he was 3 years and 11 months when we had the x-ray done (he was 2 weeks from turning 4!). His results for his bone study was 2 years and 8 months to 3 years. He was almost a year behind by his bones. The doctor then asked what happened when they referred me to Children's. I said, I was never referred. I told it was all normal and there was nothing to worry about. He said that he hadn't looked at the file since the NP took over at the next visit but we should have been referred to at least check everything. Our story with Failure to Thrive isn't over yet!!

As far as Matt's lymph nodes... I'm not worrying. About the thing I was worried about anyways. Currently his ears both show infection (he even let me look at them with the little tool!). His tonsils are double the normal size (always have been). His eyes have dark spots under them (in the corners) which indicate pressure or something in his nose. He's going to assume that it's allergies or sinuses that make this lymph node happen. But if it's something else, part of our failure to thrive (FTT) could show what's going on.

I've been looking up all these symptoms combined as well as "meeting" up with moms over at Caring Pages and there are a lot of things that could cause FTT and that could also be causing his lymph nodes to be the way they are, the tonsils to be the way they are, and cronic ear infections. It could be so many things that I'm scared. I'm scared to hear the worse and hopeful to hear the best.

The doctor did say that 8 times out of 10 when they send a child to Children's Hospital for FTT it turns out to be nothing. I'm kind of hoping that is how it goes... but that still doesn't explain why he's so small at 5.5 years of age.

So, we got our referral to Children's based on FTT. He's suppose to go in June but I have to call and re-schedule to July because he's with his father for awhile in June. So, I'll let you know when that is going to happen. We did have to make a trip to the local hospital to get some more labs done... so they have results that aren't a year and half old. I'm actually kind of suprised they didn't do another bone study on him. But maybe that's something we will do again when we get there. With all the possibilities for him... I'm scared. A little worried but trying to convince myself that it will be all normal in the end.

P.S. Please note that he's been diagnosed with Failure To Thrive for a good two years now... before that was just low weight. BUT because they thought he was gaining weight (nurses weighing him with winter clothes on) it was a "back burner" type problem. Because as long as he gained some and didn't stay exactly the same he was "thriving". So, that's why we are "facing FTT again"... because it's an issue that we've watched but it hasn't gone anywhere in the last 6 months. They were happy with 2 lbs gained in that time... even though I tried to tell them to re-weigh him without his coat. (Especially since HE was diagnosed with FTT they should have taken steps to ensure it was acurate.)


Mommato2miracles said...

Hi Jess,
You just commented on my blog. THANKS!:-) How did you find it? I came on over to yours and am reading it. FTT stinks, doens't it?!?!? My daughter was diagnosed in december, since that time we also have been referred to Children's Hospital. They have done a lot of blood tests, and then an upper GI, and a modified barium swallow. She has been put on pediasure, and also a medication that is given to people that are anorexic to try to stimulate an appetite. What have they been doing for your son? Since you have been dealing with this for a while, what are things that are helpful that you have learned? Sorry if I am asking too many questions. Just curious:-)

Missy said...

Hi! Thanks for stopping by my blog. I am enjoying reading yours! I am so sorry about your son being diagnosed with FTT. I had actually never heard of FTT until reading your latest post. I hope & pray that he does not have FTT and that it "turns out to be nothing" like the doctor said. Keeping you all in my thoughts & prayers!