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Forum: FTT and Weight Gain Issues

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  #1  
March 6th, 2006, 03:00 PM
1shortmomma's Avatar Platinum Supermommy
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Location: Daytona Beach, FL
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Pattyandthemoos or anyone else that has been in the same situation maybe you can help.
I posted before about my baby (Paige) not gaining weight. She then started gaining. Then this past weekend she lost 2oz. She had an official appointment on Friday March 3 and was at 5lbs 1oz. Then today I stopped in to have the Dr fill out some paperwork for WIC so that Paige can get her higher calorie formula since it is not the formula WIC usually offers. Since I was there and Paige was with my the Dr weighed her just to see how much she gained over the weekend. She is now back down to 4lbs 15oz.
The Dr had me make an appointment for Wed and said for me to bring DH also. She said that we will discuss some tests that she wants to run and dicuss our options.
Patty I know that you had said they ran some tests on Brandon I am just wondering what type of tests they may run. What is involved? What are they looking for? Any information you have would be helpful. I know that every situation is different but I am just looking for an idea.

-------- Paige's stats --------
weight at birth - 5lbs 5oz
left hosp (2 days) - 5lbs 2oz
1 week old - 4lbs 15oz
2 weeks old - 4lbs 16oz
3 weeks old - 4lbs 14oz
4 weeks old - 4lbs 13oz
5 weeks old - 5lbs 1oz
5.5 weeks old - 4lbs 15 oz
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  #2  
March 8th, 2006, 08:31 PM
pattyandthemoos's Avatar Administrator
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I am sorry its taken me so long to respond. I have been totally swamped at JM. ((((Hugs))) to you.

I really think that Paige needs some tests done asap. Her weight is really not good. I am not a doc but I wouldn't wait around on this. I would do what you have to to get her seen. I had Brandon admitted when he kept dropping off the growth charts. To put things in perspective Brandon was under 8 lbs at three months age. My oldest son weighed that much when he was born. Your dd is way too small and should be gaining by now.

The tests they will run would likely be for cystic fibrosis, endocrine disorders like thyroid disorders or growth hormone disorders. They will probably screen her for metabolic disorders. There are a lot of them and they are pretty rare but it is one of the big things they screen for with FTT. They will probably do quite a bit of different blood tests.

Is she taking in formula and not gaining or are you having a hard time getting her to eat?

I hope you can find something out soon. I would be persistant and demanding. You have to be with these things. Just my thoughts.

Huge ((hugs))
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  #3  
March 9th, 2006, 04:53 PM
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Thanks for responding....
Yesterday we met with Paige's Dr. Since Paige is still losing weight she was admitted to the hospital. They have her eating through a feeding tube. They are also running tons of tests to see why she is not gaining. They are testing for all of the things you mentioned in your post (CF, endocrine disorders, metabolic disorders). She will likely stay in the hospital until she is at least 6lbs and they determine the cause of her weight loss.


-------- Paige's stats --------
weight at birth - 5lbs 5oz
left hosp (2 days) - 5lbs 2oz
1 week old - 4lbs 15oz
2 weeks old - 4lbs 16oz
3 weeks old - 4lbs 14oz
4 weeks old - 4lbs 13oz
5 weeks old - 5lbs 1oz
5.5 weeks old - 4lbs 15 oz
6 weeks old - 4lbs 13oz
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  #4  
March 9th, 2006, 06:53 PM
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Posts: 5
i have a daughter with fft, she weighed 4.15 at birth she spent a week in the NICU and went home at 4.08. at the age of one she weighed 15 pounds and would lose a pound a day if she caught a cold, we have had testing done, she is 2 now and is allergic to milk, and we are still doing more testing. just keep an open relationship with your doctor, and use support from others, I didn't and I am ready to melt. This seems to be a good website for that. (I am new)

sorry I was wrong she weighed 15 pounds at 2 years of age, sorry about that.
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  #5  
March 10th, 2006, 07:46 AM
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Quote:
i have a daughter with fft, she weighed 4.15 at birth she spent a week in the NICU and went home at 4.08. at the age of one she weighed 15 pounds and would lose a pound a day if she caught a cold, we have had testing done, she is 2 now and is allergic to milk, and we are still doing more testing. just keep an open relationship with your doctor, and use support from others, I didn't and I am ready to melt. This seems to be a good website for that. (I am new)

sorry I was wrong she weighed 15 pounds at 2 years of age, sorry about that.[/b]
Welcome! I am not new to Justmommies however, I am new to this area. So far the doc. has been very helpful. We first tried a higher calorie formula. She did gain a couple of ounces on that but then lost weight again. We then met with the doc on Wed of this week to decide what to do. As hard as it is to see my baby in the hospital we decided that at this point it is probably best since she is 6 weeks old and not quite 5lbs. At least with her being in the hospital I know that her weight is being closely monitored and that she is getting the help and tests she needs.
As of right now they know that she has some sort of an oral motor problem....she has difficutly sucking and swallowing. It seems that she probably has some other problem affecting the absorbtion because even when she does manage to get a few ounces down in one sitting she doen't gain anything.

So, after 2 years they are still trying to find out what is wrong with your little girl? 15 pounds at 2 is so small. Does anything else seem to be affected by her size? For example her muscle developement? Did she do things like crawling, walking, motor skills, etc later than average? Or is she right on target for her age?

I agree that this seems to be a great place for support. I was surfing the internet and I don't really see any other groups or websites for FTT. I know I got a lot of support here during my pregnancy!
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