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Forum: FTT and Weight Gain Issues

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  #1  
March 31st, 2011, 10:27 AM
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Join Date: Mar 2011
Location: RI
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My son is almost 6 years old (Colin) an he has always been tiny ..i also have a almost 4 year old (Abby) an everyone thinks they are twins.

Colin has always been small he has been tested for CF when he was little (it was negative) he had tonsils an adnoids removed when he was 2 (which seemed to help for a short time) . We also took him for a gentic consult ( just look and measure and pretty much pick your childs flaws to pieces )to see if they could find something and they said he was fine from what they could see. He doesnt have celiacs either but not sure what else his blood has been tested for.

Colin weighs about 35 lbs and is about 41 in we see a pedi GI about every 2 months. The last visit was about a month ago and he gained no weight but did grow a little he has always been on the same curve for height but his weight has always been an issue. but I dont think he has ever been FTT He is currently being treated for Crohn because of what was seen during a colonoscopy but the biopsy was normal he takes pentasa twice a day for this. the only thing it has seemed to help is his BM. He used to have about five soft ones a day an now he has maybe one or two formed ones but now he has blood on the toilet paper occassionally. From what I have seen size wise I seen no real reason for straining. they think he might be constipated an pushing to hard.

He can be a fairly decent eater but if he eats good one day the next couple suffer. He isnt picky and eats most things I cook . ( he was on a appitite enhancer which was just stoped cause we didnt feel it made him eat any better)

This week we saw the feeding team ( different gi doc, OT, speech, nutrtonist, physcologist )per the GI doc and this is what they told us.

make him eat all meals at the table with no tv ( he tends to be a graizer )
boost his calories by layer his food with high calorie things.
get a sensory OT eval an get him a right height chair ( 150.00 ) he is behind with his motor skills
more blood work to look for elevated SED levels an maybe repeate scopes
talk to regular pediatrition about seeing an allergist ( he is always congested sounding)

I have another appt with them in the middle of april and his GI after that .

I guess I was just wonder what other people think .... I don't think he is just small but I don't really know what else could be going on .
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  #2  
March 31st, 2011, 09:08 PM
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Hi and welcome!!! My name is Sarah and my DS Danny is 3 years 8 months. He is FTT and has several other problems as well including but not limited to food allergies.

I think the feeding teams tips are good ones. If the ball is just now rolling on this that is where we started. Allergies were at the top of our initial list of problems. Food protein intolerances often manifest as GI issues. Food allergies can manifest as congestion and drainage as well...not just hives and rashes. Danny's milk protein issues made him congested, stuffy and EXTREMELY gassy for example. Not the typical food allergy response for not the typical child. Trust your gut. If you know he isn't growing like he should, push to get the problem solved. It has taken me a little over three years to get us where we are now. Most cases don't take that long but we are finally narrowing things down to a disorder called shwachman-diamond syndrome which even our GI knows pretty much nothing about. That explains the 3 year process. I would definitely follow what the feeding team is proposing and if they haven't ordered for you to do a food journal with appx portion sizes (tsp, tbsp, cup) for a few days and then submit to the nutritionist then I would suggest that via the phone and they can have you mail one in. The nutritionist will look over everything and if he isn't getting enough calories to pass his body weight then that is likely the cause of his slow weight growth. There will likely be research into why he isn't hungry enough to eat much but at least you would know that he is absorbing things well.

I hope something in there helped. Stick around and I hope to become familiar with you and your LO's more over the coming months. Feel free to jump right in.
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  #3  
April 1st, 2011, 06:31 AM
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Join Date: Mar 2011
Location: RI
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Thanks ! I have already started keeping a food journal cause I need to know what he eats an because I am at work all day this way I know .....I did this when he was little (i still have it )everyone thought I was nuts but I can't remember all that stuff off the top of my head an doctors want to know ..... the GI on the feeding team called me last night and said his blood looked fine he is not anemic an his SED level was normal ...this may sound weird but sometimes I just wish it wasn't an they could tell me what the problem is. We are working on the eating at the table but like I said he is with Nana all day an she is quite the push over..... So I guess time will tell .

Thanks
Dalyn
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  #4  
April 1st, 2011, 08:15 AM
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Posts: 217
Hi and welcome

Your LO sounds a lot like my DD. She has several issues most stemming from her premature birth. She has asthma, GERD/aspiration, FTT, chronic sinusitis, immune insufficiency, and maybe some others I cant think of right now. She does not have any GI problems other than the GERD though. She just turned 6 years old in February at which time she weighed a bit over 33 pounds. She is tiny and has been all her life. She too has been tested for CF, allergies, thyroid, etc... all negative. Her development has always been perfect though, so I am no help there.

We use calorie packing and pediasure or carnation instant breakfast to boost her calories but it doesnt really help her gain any faster. She is just small and probably always will be.

If you are concerned that they are missing something, keep pushing for answers.
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  #5  
April 1st, 2011, 08:41 AM
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Welcome to the FTT board. I've been MIA this week, but I'm back now. I'm Hope, my FTT DD, Ava, is g-tube fed for most of her nutrition due to her Mitochondrial disease.

I love that he's seeing a feeding team. A multidisciplinary approach helps. I would ask to try periactin to stimulate his appetite. I know many kids who've found success with it. I know how hard it is to look for answers and not find them all. ((Hugs))
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  #6  
April 1st, 2011, 09:00 AM
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Thanks it is so nice to hear from others who know what I am talking about.....We have tried the periactin for 5 months we just took him off of it because it didnt seem to make a difference he still didnt gain weight an didnt eat much better....He does have carnation instant breakfast an we try to make his meals high calorie. I will just keep documenting his food intake an watching his BM as much as I can ..it is hard to have other people monitor that plus he doesn't always tell you when he is going... I do still find it alarming that he has blood on the toilet paper ( my poor baby )but it isn't in the stools so i guess thats a plus ... It could be worse an I see that just from reading here so I'll take what I got an keep putting one foot in front of the other.
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  #7  
April 1st, 2011, 04:28 PM
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Don't feel about about wanting something to be positive or abnormal. I know I have done that SOOO often. Good luck with everything.
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  #8  
April 12th, 2011, 10:26 PM
Super Mommy
Join Date: Nov 2010
Location: Colorado
Posts: 782
Hi there,
I'm totally lurking from the Nov 2011 DDC, I was searching the forums for something and this post came up, so I read it. Anyway - even though you've tested for allergies - some, like wheat/gluten, more often than not, give false negatives...especially when a blood test is done. A fecal test is more reliable, and the person has to have eaten gluten for it to show as well.

Have you had Colin tested for gluten sensitivity or Celiac disease? Gluten intolerance can cause a host of problems, including growth retardation and a signficant lack of appetite, digestive problems, even some emotional challenges like hyperactivity and/or lethargy. Its also relatively easy to treat..although there's no cure...by following a strict gluten free diet. Easier today than 10 years ago, that's for sure.

I hope you get some answers soon!
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  #9  
April 13th, 2011, 06:46 AM
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Join Date: Mar 2011
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Thanks for the idea ...Colin has given a fecal sample but if I remember it was for the clinics or studies he is in. I am not sure what it he was tested for . I do know that his blood was tested for celiacs. I will have to remeber to ask the doctors about this. He has an appointment with the feeding team next week. Thanks again.
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