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TOPIC TITLE: IUGR - SGA - & GROWTH DISORDERS
Created On 11/3/06 12:04 AM
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ayiddishemommeh
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11/3/06 12:04 AM
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Hi everybody. Could any of you tell me why this forum hasn't been created yet? Nobody has any concerns over this matter? Or maybe my son is a yuchid w/ his tiny peanut stature. We've tried g & gj feeds, w/ concentrated neocate formula & my yingele is still 18 - 19 lbs. since his 18 mo. of age. He is now 31/2 years & I believe there is nobody as sweet as him. We did lots of research &testing but havn't gotten anywhere. Does anybody have any experience or advice? Please reply. ayiddishemommeh.


Edited: 11/3/06 at 12:09 AM by ayiddishemommeh
 
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CAP
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11/3/06 8:04 AM
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What does your Dr say? have you taken him to a genetist? THere are several conditions/sydromes out there, where one of the symptoms is short growth... he could have something in a very mild form.... I know of several who took growth hormones.. and they worked!

Hatzlacha with your cutie!!
 
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ayiddishemommeh
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11/6/06 2:39 PM
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Hi, and thanks for your reply.It's great to be connected. Of coarse we went through genetics, however only as much as CHONY (columbia) was able to offer us. Now were in for simply follow-ups. It hasn't gotten us anywhere. Recently our cardialogist suspected him suffering of RSS (russel silver syndrome) , but DR. Harbison ,which is one of the biggest proffesor on RSS disagreed. Although anybody w/ a sm. stature could use GHT (growth harmone therapy) it can still not be considered for 'such' underwieght kids. So now as I'm waiting for my next GI visit,I try to maintain my sanity by remembering that we're not in control of anything, we're simply kind of babysitters. In the mean time we got an invitation from NIH for some more genetic testing which we might consider. As far as getting proper nutrition into my son, I'm afraid we'll have to go w/ TPN, which of coarse is our last choice. We're also waiting for an appnt. w/ Dr. Rudolph (as I mentioned in the GERD column) in Wisconsin, for motility testing since our Dr. think it might be a mal-rotation on top of mal absorbtion. I don't know whom to trust except for the aibirshter. They only know whatever the book dictates. So I study Ani-Maamin and hope for the best to come our way. Easy please.
ayiddishemommeh
 
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CAP
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11/6/06 4:03 PM
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Does he have heart issues?

Did you consider Noonan sydrome? I know someone with it... & have lots of info...

You can check out the basics on: http://www.noonansyndrome.org/

remember though, a person can have a mild case without the serious relatedd conditions.
 
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hb
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11/6/06 9:02 PM
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Who's your local gastrointerologist?
We went to Dr. Rudolph. He's an amazing guy!
Did they do the fecal fat test for malabsorbtion? Is his development affected? Some docs might try TPN if J feed arent doing the trick. However, there are many side effects so you really should check for a diagnosis and other treatment plan first. Are you able to get a decent amount of calories via G-J feeds?
 
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ayiddishemommeh
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11/12/06 9:07 PM
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Hi Cap, I just finished my visit on the NS site. I looked through the common characteristics & it doesn't seam to match my son's disorders. We did think that he suffers from RSS or russel silver syndrome, however the Dr.'s aren't sure yet.


My son was born w/ a heart defect, but not any of the ones listed. His heart is bh' perfect w/o having to repair it surgicaly. He was on dig. & las. for about a year un till the deffect disappeared.

Thanks for trying. Any more suggestions?


Edited: 11/12/06 at 9:14 PM by ayiddishemommeh
 
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ayiddishemommeh
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11/12/06 9:42 PM
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Hi hb, our local & only GI is Dr. Amy Defelice @ CHONY. Please do not adopt her.


We're waiting for an appiontment w/ Dr. rudolph. I must admit I'm quite nervous when I think how painful the test might be. Poor shefele he went through so much already, who can tell if the motility tests will get us anywhere? There's only a fifty percent chance of figuring out the problem, & again a fifty percent chance of helping it. But we anyway have no other clue, so we have to do what we can. Hashem Yisburuch will help us come through. He's always w/us.


As much calories we tried to put into him via g & gj it hasn't helped him gain at all. It obviously seams to be a malabsorbtion issue on top of his malrotation, but my GI takes it easy . She doesn't rush anywhere. So I'm waiting for my next appiont. to disscuss this matter again.


I'm prepared for TPN. The socail workers tried to persuade me to that. I havn't given my consent yet, since my husband still disagrees w/ that. Please understand. My neighbor lost her 9 mo. old baby to a liver transplant that resulted from TPN. Of coarse the Dr. denies. By now I doubt we have another chioce. However I would still appreciate to hear more about this subject. ayiddishemommeh.
 
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hb
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11/13/06 8:14 AM
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I would definately hear Dr. Rudolphs opinion before condsidoring TPN. It can affect the liver, but they do monitor it with weekly blood levels.
Did you look into growth hormones? If you live in the Brooklyn area, there is a wondering LIVE tube feeding support group with a group of moms with children with various different syndromes and conditions that are dealing with gtubes, jtubes, NG, TPN, etc...
They meet every so often and are well versed in this field. PM to me privately if you want the contact information.
good luck.
 
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in the dark
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6/16/08 12:11 AM
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I know this is an old topic, But I HAD to reply. To make a long story short. My son weighs 21 lbs he's almost 3 years old. The only place He gains weight beleive it or not is in Miami Beach. I go there quite often. His GI is Dr. Levi in NYU (used to be in Columbia). we never figured out why he gains 1 1/2 lbs in 3 weeks there. Because I cook in Miami Bech, FL the same food than at home, he gets Neocate to drink, I don't shlep along his G-Tube stuff. I hope to log on again shortly, in case you have any questions.
By the way, My son is perfectly fine otherwise. he just had an IQ eval for the Board of Ed and his level is way over 4 years. He's adorable. BUT hates to eat or drink since before he was born. He was never diagnosed with anything more than IUGR and SGA and Failure to Thrive. Good Luck


Edited: 6/16/08 at 12:14 AM by in the dark
 
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FORUMS > MR/DD Mental Retardation Developmental Delayed > Growth Retardation < Refresh >

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