Failure To Thrive (FTT)

rsd12 · December 2010

So we got the results from the endoscopy today. Keegan does not have Celiac Disease (gluten allergy). Which is very good news! So the GI doctor diagnosed him with FTT. Which could be confusing since he WAS a really really good eater before he started the high fat/calorie supplement 2 months ago. Now he no longer eats ; ) So it is a Catch22, right.. but he is gaining on the supplement both weight & height!

So he is still on his boost supplement, plus a multivitamin for his iron deficiency & we now need to work with him to get him to start eating again, but he still needs his supplement. Oh lord!

But he has grown 3 inches in two months!!!!!

Follow-up in six weeks. Husband thinks they are just trying to steal our money ; )

I do want to add that this boy is soooooooooo active & overall very very healthy.. so it seems like he just burns more calories than he eats. He is a very happy boy! Sometimes there can be a stigma with FTT.

stever · December 2010

I'm just glad it's not Celiac's!

Piranha54 · December 2010

Wow, that's amazing growth! And I'm so happy you finally have an answer, and that it's not Celiac. Ask your pedi or GI doc about seeing a pediatric dietitian or see if there's a children's feeding program associated with your children's hospital. No matter how good the MD is, these folks often know great tips and tricks to get LO's to eat better. GL

mama.bear · December 2010

I'm sorry Keegan has undergone the endoscopic procedure for the test but happy to hear he does not have celiac. We are having struggles determining a medical mystery for Jason as well. He doesn't gain weight yet is almost the tallest in his class. He's tall, skinny and has tons of energy. He has asthma, is allergic to milk and is constantly sick. His pediatrician wanted a gluten free diet which we tried for 6 wks+. His allergist wanted him tested for cystic fibrosis. The same day I took him to the pediatrician for a follow up, the dr. said he attributed Jason's "improvement" to his gluten free diet. Ironically, the same day, the allergist ordered more lab work to rule out an auto-immune disease due to his constant sickness. Furthermore, his teacher wants him evaluated by a psychologist. WTH?! He has been sick since Oct. and lost 1.5 lbs since last week. DH is a nervous wreck. Doctors want follow up after follow up. I'm fed up with the lack of answers and feel like they're printing money at their office.

Sorry to rant. This really hits close to home. I'm really fed up with the lack of answers since we've begun this journey. I'm sick of my boy not partaking in school parties like the rest of the kids because he "can't" eat pizza, cake or cookies. I'm alienating him without reason it seems. All I know is he's skinny, always sick and extremely (hyper?)active. Also, a very intelligent, loving, sweet boy.

robynlesley · December 2010

First, a (((HUG))) for Kari because of all you're going through. Poor Jason... I can only imagine how rough it's been.

And I like the idea of taking Keegan to a nutritionist if possible. Maybe you can get some other ideas to help with the weight issues. Though I don't understand what the FTT is if he's growing (3 inches in height). Seems like he's thriving to me.

peeper72 · December 2010

Whew! Glad it isn't Celiac's.

I'll echo the feeding therapist idea - I didn't know there was such a thing except an IRL friend has been seeing one with her daughter since the Baby was about 4 months old (now 15 months). The baby has some really serious issues with eating and it has really been a struggle for them. My friend celebrated the day that Laura actually achieved a percentile for her weight (even though it was <5%). The feeding therapy is the thing that has gotten them through.

ateytelb · December 2010

Glad he doesn't have Celliac. Looks like he is growing great right now - maybe the worst part is over?

ateytelb · December 2010

mama.bear:

I'm sorry Keegan has undergone the endoscopic procedure for the test but happy to hear he does not have celiac. We are having struggles determining a medical mystery for Jason as well. He doesn't gain weight yet is almost the tallest in his class. He's tall, skinny and has tons of energy. He has asthma, is allergic to milk and is constantly sick. His pediatrician wanted a gluten free diet which we tried for 6 wks+. His allergist wanted him tested for cystic fibrosis. The same day I took him to the pediatrician for a follow up, the dr. said he attributed Jason's "improvement" to his gluten free diet. Ironically, the same day, the allergist ordered more lab work to rule out an auto-immune disease due to his constant sickness. Furthermore, his teacher wants him evaluated by a psychologist. WTH?! He has been sick since Oct. and lost 1.5 lbs since last week. DH is a nervous wreck. Doctors want follow up after follow up. I'm fed up with the lack of answers and feel like they're printing money at their office.

Sorry to rant. This really hits close to home. I'm really fed up with the lack of answers since we've begun this journey. I'm sick of my boy not partaking in school parties like the rest of the kids because he "can't" eat pizza, cake or cookies. I'm alienating him without reason it seems. All I know is he's skinny, always sick and extremely (hyper?)active. Also, a very intelligent, loving, sweet boy.

Looks like they ran all those tests and still no answer? Maybe they want follow-ups b/c they care and thying to figure out what's wrong? There are 4 physicians in my family: H, FIL, B, SIL. None of them will want the patient to come to their office for the sake of getting more money. When my H decides the patient doesn't need a procedure he performs, he is happy to tell the patient that he doesn't need the procedure. Plus, the "printing money" thing doesn't work this way. A physician may be interested in getting more new patients so he can make more money down the road potentially, but he wouldn't want to see the same patient for an unnecessary appointment - not worth it.

I'd like to think that most physicians are as moral as my family members. If you are not happy with the current pediatrician can you switch? Also, how about seeing pediatric endocrinolgist? GL!

mtnrider · December 2010

robynlesley:

First, a (((HUG))) for Kari because of all you're going through. Poor Jason... I can only imagine how rough it's been.

And I like the idea of taking Keegan to a nutritionist if possible. Maybe you can get some other ideas to help with the weight issues. Though I don't understand what the FTT is if he's growing (3 inches in height). Seems like he's thriving to me.

This!

rsd12 · December 2010

mtnrider:
robynlesley:

First, a (((HUG))) for Kari because of all you're going through. Poor Jason... I can only imagine how rough it's been.

And I like the idea of taking Keegan to a nutritionist if possible. Maybe you can get some other ideas to help with the weight issues. Though I don't understand what the FTT is if he's growing (3 inches in height). Seems like he's thriving to me.

This!

rsd12 · December 2010

mtnrider:
robynlesley:

First, a (((HUG))) for Kari because of all you're going through. Poor Jason... I can only imagine how rough it's been.

And I like the idea of taking Keegan to a nutritionist if possible. Maybe you can get some other ideas to help with the weight issues. Though I don't understand what the FTT is if he's growing (3 inches in height). Seems like he's thriving to me.

This!

It is very confusing! He has only gained height & weight because of the nutrients in the Boost. He drinks 16 ozs of this a day & it has a crazy amount of fat, fat calories, protein, & other vitamins that Whole milk do not have. When he was eating solid food & nursing he was not gaining.

mama.bear · December 2010

ateytelb:
mama.bear:

I'm sorry Keegan has undergone the endoscopic procedure for the test but happy to hear he does not have celiac. We are having struggles determining a medical mystery for Jason as well. He doesn't gain weight yet is almost the tallest in his class. He's tall, skinny and has tons of energy. He has asthma, is allergic to milk and is constantly sick. His pediatrician wanted a gluten free diet which we tried for 6 wks+. His allergist wanted him tested for cystic fibrosis. The same day I took him to the pediatrician for a follow up, the dr. said he attributed Jason's "improvement" to his gluten free diet. Ironically, the same day, the allergist ordered more lab work to rule out an auto-immune disease due to his constant sickness. Furthermore, his teacher wants him evaluated by a psychologist. WTH?! He has been sick since Oct. and lost 1.5 lbs since last week. DH is a nervous wreck. Doctors want follow up after follow up. I'm fed up with the lack of answers and feel like they're printing money at their office.

Sorry to rant. This really hits close to home. I'm really fed up with the lack of answers since we've begun this journey. I'm sick of my boy not partaking in school parties like the rest of the kids because he "can't" eat pizza, cake or cookies. I'm alienating him without reason it seems. All I know is he's skinny, always sick and extremely (hyper?)active. Also, a very intelligent, loving, sweet boy.

Looks like they ran all those tests and still no answer? Maybe they want follow-ups b/c they care and thying to figure out what's wrong? There are 4 physicians in my family: H, FIL, B, SIL. None of them will want the patient to come to their office for the sake of getting more money. When my H decides the patient doesn't need a procedure he performs, he is happy to tell the patient that he doesn't need the procedure. Plus, the "printing money" thing doesn't work this way. A physician may be interested in getting more new patients so he can make more money down the road potentially, but he wouldn't want to see the same patient for an unnecessary appointment - not worth it.

I'd like to think that most physicians are as moral as my family members. If you are not happy with the current pediatrician can you switch? Also, how about seeing pediatric endocrinolgist? GL!

With all due respect, please walk a mile in my shoes and tell me how great doctors are. Obviously, I don't have the same level of confidence that you do. We have seen many. My boy is still sick. This has been going on, to some degree, since his birth 5 1/2 years ago!

As a parent, it's very deflating to know something is wrong with your child and not be able to correct the problem. I'm sorry if the "printing money" thing offended you. You have no idea how much money we have spent to figure out this medical mystery.

M.Amy · December 2010

How frustrating! I can't imagine struggling so long with trying to figure out what is wrong. I am so sorry.

Peppernut · December 2010

I'm happy it's not celiac! I'm sure he'll be fine, especially after reading that your husband and his mom have speedy metabolisms. You're awesome for keeping tabs on him!

NewMrs07 · December 2010

Ditto, and I?m glad it?s not Celiac, although if it was at least you would have an answer. I can?t believe no one can figure it out, maybe it?s time to go out of state? Have you done your own research using the symptoms as a guide? Not saying you know more than doctors but sometimes mother?s instinct helps. Maybe you can guide the doctor in figuring out what?s wrong. I hope you get answers soon so K can feel better.

NewMrs07 · December 2010

Sorry, I got confused, the Celiac comment is about Keegan and the rest is about mama bear?s Jason

That?s what happens when you read things too fast!

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