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Hi All...Mathieu Update

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Hey,

You probably do not remember us, but I am a lurker still. Mathieu is still

not diagnosed with anything. A little recap:

They were a little concerned with IUGR at around 30 weeks, but with an

ultrasound noted the only small growth was his femur bone. All was well

until he was about 6 months when he took a rapid plummet from the 50% to

under the 3% and he making there still at 2 ½ years. He is not as drastic

as an RSS Toddler he is now 32” and 25 pounds but his extremely slow growth

delay with no diagnosis to pinpoint, along with a long history of diarrhea

and fevers and a ton of other stuff has us all still confused. We have been

everywhere, and tested for everything. He appears to be a developmentally

normal child that is just small, and Endo is now contemplating regardless of

what the diagnosis is we may want to start using GH to help him at least

catch up. The last x-ray they did showed growth arrest lines which can

appear for many reasons one of which is usually when a child is not reaching

growth potential. He still has fevers, eats like a little piglet, and is

now showing signs of sinus issues to the point that he has been on

antibiotics since April after an x-ray revealed his cavities were clogged.

We are visiting ENT about this in August, and the Endo even noticed his left

ear has some scarring related to all the drainage. He had problems with his

vision and go every 4-6 months in hope we can slide glasses off one more

time.

She looked at his IGF-1 taken in December and it was at 24, normal for him

is at least 100. She said that was pretty low and asked if we thought about

doing the stimulation test. I know a friend that had this done on her 10

year old, but I was curious if anyone had this done on young toddlers. I am

sure some of you have not considering RSS is a diagnosis. It can be scary

to have the Stim test done, they can have many reactions, (although rare,

but some serious) IU am sure we will not be starting GH until he is 3

(granted if the stim reveals he needs it)

I can say the good news is we really get good use out of his clothes, he on

his third season of his shorts and still wears a lot of his 3-6 month

clothes, very nice. Shoes are purchased maybe once a year which is also a

big money saver, but it is time to see him reach his true potential, I am

sure you all understand that!! :-)

Any information is appreciated!!!!

Thanks a lot Guys, Jay

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