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Forum: FTT and Weight Gain Issues

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  #1  
September 29th, 2005, 08:16 AM
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Hi. I'm new here. I was hoping to share my son's story with you and (hopefully) get some support from others going through similar problems. My son is 3.5 yrs old. He's been diagnosed with FTT since about 6 months. He was born weighing 5lbs 13 oz. which is the same as his older brother (both 3.5 weeks early). My eldest son is growing leaps and bounds. He's never had any issue. Both DH and I are above average in height as are our families. Genetically, my boys should be about the 90th% give or take some. Here's Michael's story: -
Around 4 weeks of age, he contracted a virus (like coxsackie) that caused blisters in his mouth. He stopped breast feeding completely. We had to syringe him with formula just to get him to eat. After that cleared up, he was able to take bottles of formula but never had a great appetite. This continued throughout his life. He had some interest in solids but never really seemed to care about them. It wasn't as if he would take bottles over food (and complete his bottle). He might taste some food, turn away, and then take a few sips. Thats it. We went to the endocrinologist. Nothing wrong. Had a sweat test. Normal. Checked out his heart. Normal. We eventually went down to CHOP in Phila when he was 2. We met with their feeding team. They were considering a feeding tube at first but felt that he was making small strides after a couple of months. THey had him drinking a hi-caloried fruit drink from Nestle tht he liked. Well, Nestle dropped the product and he won't touch Boost, or Pedisure. We've lost a small fortune in buying those products and having them wasted. We tried adding powdered caloric supplements. Eventually he stopped drinking anything that had them in it. We took him to the Gastro group in CHOP. They did a milk scan - Normal. Blood work for Celiac - Normal. At age 3, he seemed to be making small gains. He weighed 25lbs (he has never even made it to the 1st%percentile yet). However, for each "good" day that we have with him eating, there are 2+ bad days that he turns away from his food. I just took him back at 3.5 month check in. He only weighs 26lbs and 2.5 ft tall. He has started to turn away again on his own growth curve. Loss of weight and height on the curve. I am so upset. I don't know what to do. We are trying him again on the Scandishake products (he used to refuse to eat those too) but by mixing in only a smaller amount. After 1 month we will check his weight again. If it isn't better, we will do an upper endoscopy to see if anything looks unusual. My heart is breaking. My son is soo loving and I feel so helpless and useless right now.
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  #2  
September 29th, 2005, 11:29 AM
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My daughter has Cf and we've been down the same roadas you forall the tests she is 2.5 yrs old and she is only in her 10% tile we use scandishakes we get free when we order her pancrease meds she thinks its bunny mil fro quick so i will make a gallon of it with out her noticing it and she will ask for the bunny milk anddrink the whole thing. but when it comes to food for get it she looksat it trys a bit not even an walks away right now she weighs 26lbs hopefully when she sees herpulmonary dr she will be higher by giving her the scandishakes all the time im thinking of you and i hope things start looking up for you my heart goes outto you cause i knowwhat its like and doctors having no answers for it.
Amy
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  #3  
September 29th, 2005, 02:40 PM
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Welcome to the board. My name is Patty. I am the host of this board. My son's name is Brandon. He is two years old and had failure to thrive for a while. He is much better now but we still struggle from time to time. It sounds like you have had a much more difficult time of things than we did. Brandon was on pediasure for a year. We did all the tests like you, seen the feeding team, worked with an occupational therapist, etc. For us, pediasure was the answer. He pretty much lived on it for months. He had problems with dysphagia and had trouble swallowing and chewing. That has gotten a lot better.

Are you still working with a feeding team? Do they think that this is a sensory issue? Or lack of appetite? Or are you not getting answers from your doctors?

I am glad you found our board. Please stick around and let us know how things are going.
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  #4  
September 30th, 2005, 10:43 AM
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I wanted to say!
My daughter Anika is 3 (just last July) also, and has been FTT off and on since she was born (33 weeker). She uses a G-tube now and is doing better weighing 29 lb. at 39" tall. We've been down the same road of tests and frustrations as you.
Now we are having trouble with my son, who was always big and fat and is suddenly losing weight even though he's eating a lot. So I guess the saga continues.

PM, IM, or email me anytime!
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  #5  
September 30th, 2005, 01:29 PM
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Hi, just wanted to say hi and give a big hug to ya. I completely understand how frustrating this can be. I have a daughter who is 2 years and 4 months old and weighs 19.6lbs. and is 32 1/4 inches tall. We have been to the Children's Hospital and had all the tests done which came back normal. However, we did find out her Alkaline Phosphate level is extremley high (retesting in two weeks), zinc level is really low (going on supplements), and selenium level was low (just watching it). However, the other tests we had done...Celiac, Cystic Fibrosis, etc. were all normal. She is on Periactin (appetite stimulator) that seemed to help initially, but now doesn't seem to help.

Her IGF-1 (Growth Hormone) level decreased from 52 to 44 over the past year. This concerns me, but they said since her height has increased they just want to watch it. Anyone have any experience with this?

Please feel free to e-mail me at anytime! I know today has been trying and sometimes having someone to talk to really helps

Cheri
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  #6  
October 1st, 2005, 03:42 PM
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I remember they checked Brandon's IGF-1 and it was low but when they called the endocrinologist he just said that was probably due to poor nutrition. I can't remember what it was now but I remember I posted about it a while back. They haven't followed up on that but Brandon is no longer FTT. His weight and height are good now. He is still small but I am not really worried about him as much any more. He is difficult to feed but he is getting better all the time.
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  #7  
October 3rd, 2005, 07:11 AM
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Hi Everyone! Thanks for your replies. It means so much to know there is someone else who can appreciate what you are going through.

Presently we are not seeing the feeding team at CHOP. THeir last suggestion was to go to an intensive 3 week program where they watch your child eat and work with you to get them to eat. Unfortunately I live about 90 minutes away which means I would have to stay there onsite. I have an 8 yr old child that needs someone to take care of him but I don't have any other family in the area to help. If DH doesn't work, we don't have income... In addition, the CHOP gastro team held a different viewpoint. They weren't too much in favor of the "make your child eat" viewpoint. All things considered, we are working with the Gastro group at this time. We tried the Periactin. It worked at first for us too. Then it seemed to stop. Both the Feeding Group and the Gastro group did NOT want us to use it long term so we stopped. We are spending the next 30 days trying to get only super high calorie foods into him. The first 2 days of high caloried smoothies went well. Now he is refusing everything again. I am out to pick up another case of Scandishakes today. I was able to find cases of the Nestle NuBasics juice through a different supplier so I have that too.

He saw the endocronologist when he was so little (1 or 1.5?). At that time it was reported all his levels were fine. We had a bone xray done which showed he growth was 6 months behind that what we expected. This was in line with his weight/height as well at the time. But the specialist said there was nothing to do about it.

I think we will opt for the upper endocopy if there isn't an improvement in 30 days. I have also heard great things for FTT coming from the DuPont Hospital in Delaware. I may contact them to schedule an appointment as well. Right now I am just so exhausted.

Thanks again for those kind thoughts. It brings me strength. Here's some hugs going back at you all too!
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  #8  
October 3rd, 2005, 07:26 AM
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((Hugs)) Thanks for updating us. I hope you will continue to stop in. We don't have a lot of moms here but everyone is very supportive. I am fortunate to be over the rough parts with Brandon, at least I hope. But I remember many tears trying to get him to eat. I am with your gastro team on the force feeding. I don't think thats a good idea either. I was doing that with Brandon for a while because I didn't know what else to do. Now I don't fight with him. But I don't know what I would have done if he had refused the pediasure.

((((((Hugs))))) please check in and let us know how things are going.
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  #9  
October 4th, 2005, 08:10 AM
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Quote:
Originally posted by pattyandthemoos@Oct 3 2005, 10:26 AM
((Hugs)) Thanks for updating us.* I hope you will continue to stop in.* We don't have a lot of moms here but everyone is very supportive.* I am fortunate to be over the rough parts with Brandon, at least I hope.* But I remember many tears trying to get him to eat.* I am with your gastro team on the force feeding.* I don't think thats a good idea either.* I was doing that with Brandon for a while because I didn't know what else to do.* Now I don't fight with him.* But I don't know what I would have done if he had refused the pediasure.

((((((Hugs))))) please check in and let us know how things are going.
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I have an 18 month old boy who will not eat. He is 19lbs and has been that weight since his 12 month checkup. I stoped breast feeding at 12 months and since then feeding has been a fight. Pedi says he is not concerned because he is never sick. When he was 2weeks old he was hospitalized due to abd distention and bloody stools. the took him offf breast milk and put him on neocate(after 3 months hesaid I could brest feed again)) it was a battle to get him to nurse so I eventually pumped him his milk and direct nursed when he felt like it. ,christine
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  #10  
October 4th, 2005, 08:19 AM
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Im going to try this again. well now that my son is 18 months old I am still concerned. I try to get him to eat. I add milk to oatmeal to give extra calories. I try to feed him food every 2 hours. Pedi says he is fine. He is 19 lbs and has been that way since 12 months. He has been having feeding issues since he was a baby. Maybe because the GI DR couldn't decide if he wanted the baby to have neocate, or breast milk. anu sugg estions are appreciated
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  #11  
October 14th, 2005, 09:46 AM
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Hello my name is Jen. I am new to reading this board, however I post on the vision impairment board from time to time for my daughter Ella. However, the reason I am reading this board is because of my son. Mason is 3 years and one month and weighs 26 pounds and is 36 inches tall, he has only once made it passed the 10th % at all of his check ups, however we have never once had the pediatrician say anything except keep him on D milk and pretty much put butter on everything to help him gain weight. All the doctors say is that I am on the small side, as is my husband. I just wanted to ask... should I be concerned at all? My son isn't a big eater, never has been. Every once in a while he will get hungry and eat a good bit, but never really puts on weight. Plus, he has never been sick, so that is why I haven't worried about it. Just asking for some input, thank you.
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  #12  
October 14th, 2005, 05:06 PM
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Quote:
Originally posted by JLGrabill@Oct 14 2005, 12:46 PM
* All the doctors say is that I am on the small side, as is my husband.* * I just wanted to ask... should I be concerned at all?* .
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There is a formula that our endo used to determine what percentile my son should be in. From that he said it was normal to be "off" (aka within) 2 percentile ranges. In our case, Michael should be in the 90% percentile ideally, but minimally around the 70%. Since he isn't even in the 5th percentile, we know there is an issue. I'm not sure what the formula is however ... He took records of heights from certain family members of my side and all records of my husbands side. Sorry I can't be clearer and of more help. :rolleyes:
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  #13  
October 14th, 2005, 07:20 PM
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hmm, that's interesting, the doctor's never said anything about other relatives or anything. They just ask us how he eats, and I reply: "a normal child, doesn't want to eat anything except yogurt and fruit! " Thanks for your feedback though. I will atleast keep an eye on his weight , I personally had him on pediasure for awhile , and if I notice that he stays this weight for the next few months, maybe I will actually bring it up with his doctor. Best wishes for you and your son! Does he like yogurt? My son LOVES the yoplait whips (because they are so smooth) not a ton of calories, but sometimes it helps for a snack or a breakfast, lunch or dinner, when they won't eat anything else.
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  #14  
October 14th, 2005, 07:41 PM
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I think doctors look to see if you child is staying on his growth curve. If they drop on the growth curve or are below the fifth percentile they get concerned. Some doctors are more aggressive with this than others. Also if you have small family members that is a consideration.

Brandon likes yogurt too. That was one of the first foods we got him to eat.
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  #15  
October 19th, 2005, 11:07 AM
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Quote:
Originally posted by pattyandthemoos@Oct 14 2005, 10:41 PM
I think doctors look to see if you child is staying on his growth curve.* If they drop on the growth curve or are below the fifth percentile they get* concerned.* Some doctors are more aggressive with this than others.* Also if you have small family members that is a consideration.*

Brandon likes yogurt too.* That was one of the first foods we got him to eat.
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just an update on my son he went to his 18month checkup and he is now 20lbs and 30.5inch. pedi is happy about his weigth gain and is not concerned because even though he is not on the chart he is still trending upward on the growth scale. he also said there should be a different growth scale for premature infants(christopher was a 36 weeker 4lbs 12z). he said that compared to his birth wt he has gained quite a bit.just thought you might like an update
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