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New here.. anyone else have a cf child?

Forum: FTT and Weight Gain Issues


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March 21st, 2009, 03:58 PM
Wendy1109's Avatar Veteran
Join Date: Mar 2009
Location: Fredericksburg Va
Posts: 147
Hi My name is Wendy. I have 5 children #6 is on the way My oldest dd has cf. We are constantly battleing the weight issue. Right now we are on a down ward slide. The Dr has up her tube feedings to 4 cans of nutren 2.0 everynight (thats 2000 calories) plus he wants to get 500 more calories in her on top of all the food she eats durning the day!! This is almost impossible considering school and the rest of the medical treatments she has to do. URGH its just never ending. She is 11 and is rebelling against the stuff she has to do , which is normal for her age. anyone else going through this with an older child?
My other children do not have cf my only carrier is my dd Natasha.
Wendy mom to
Kiersten 2-13-98 w/cf
Natashya 2-24-00 w/o cf
Scott 10-18-01 w/o cf
Sanamtha 11-29-02 w/o cf
[CENTER]Killian 5-29-08 w/o cf
[CENTER]Lorelei Belle 10-24-09
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March 22nd, 2009, 10:51 AM
lovemyboysandabbey2's Avatar Platinum Super Mommy
Join Date: Sep 2005
Location: wisconsin
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welcome!! My name is Angie and my 8.5 mos old Abbey is FTT, She just had her sweattest last week for CF, the numbers were a tad higher that normal, but the DR said it wasn't high enough to cause concern...
Great to have you here and look forward to getting to know you!

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March 22nd, 2009, 07:13 PM
Mega Super Mommy
Join Date: Jun 2007
Location: Knoxville,Tennessee
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Hi!! My name is Sarah, Mommy to DS Danny. He has had one sweat test and the level was 39 so he has a retest tomorrow morning at 9:00 he also had the blood work done...the 6-8 week one...gah!!!! The first 70% have come back negative now we are waiting on the last 37% to come back. If he has it, it is most likely the type that affects more the digestive system than the lungs. That said he has had RAD since 2 months old along with extended "colds" with wheezing that lasted for months so who knows... He has weight issues, malabsorbtion/FTT...He is also younger...20.5 months...so I don't know if I could be any help to you but more if he has it if you would help with the BTDT sort of thing... ....Welcome and I hope you find as much support here as I have!!!
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March 29th, 2009, 05:52 AM
1shortmomma's Avatar Platinum Supermommy
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April 9th, 2009, 10:35 AM
iamkc's Avatar Platinum Supermommy
Join Date: Aug 2005
Location: Montana
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HI! Congrats on your pregnancy!

We're about to start all the testing for CF with Milo. He has other issues that could account for most of his problems that seem to be CF-related, but he has had the same cough/cold since November. In January, he tested positive for RSV and had bronchiolitis, but he hasn't gotten better. He has been in and out of the hospital and in Special Care for it. I guess that Russell-Silver Syndrome (which Milo has) and CF are on the same long arm of chromosome 7. We just got all of this info yesterday. I've thought about it several times, and I've been surprised that the docs haven't mentioned it. The pulmonologist gave Milo more antibiotics, more steroids, and changed his rescue nebulizer, but nothing is improving. RSS kids have notoriously low muscle tone and have a terrible time coughing productively, so we're just hoping that this is the problem!

BTW, RSS comes with most of the same issues that CF does, so there's huge overlap there! FTT, pale, poor immune system, poor feeding, digestive issues, etc.

I hope that you find lots of support here!
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