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Anyone else dealing with a FTT child?

Please only answer if your child is "failing to thrive" because I desperately need empathy and advice.

So far we have run blood tests, urine and stool tests, and we will be doing a sweat test in 2 days. We have had countless weight checks with the pediatrician, and we've gone to see a gastroenterologist, and a nutritionist. So far the tests have reveled nothing. And as soon as one test comes back the doctor will just order more tests.

We have had enough! My daughter is healthy, energetic, full of life, very intelligent, and is meeting all her milestones on time. Aside from a cold she has never been sick, and does not complain about any pain. She does have a small appetite (but so do I, so I think she's just gonna be small like her mommy).

My husband and I don't want to run any more tests, or drive all over to see more doctors when we don't think anything is wrong.

Has anyone else dealt with this diagnosis to this extent?

Answer Question

Asked by Anonymous at 6:24 PM on Jun. 7, 2010 in Toddlers (1-2)

Answers (10)
  • My sister's daughter is an FTT child. The term does not imply abnormal intellectual, social, or emotional development. She's going to be a very normal child, just a little small! Don't worry at all, my niece has skipped a grade at school and she's excellent at sports, she's a very verbal girl and full of energy.

    Answer by pipermomofash at 6:31 PM on Jun. 7, 2010

  • I had 3 FTT children and now a 20 mo FTT grandson. My first two children we didn't know why they were FTT. We had a great primary care doc that knew and trusted me and my husband and that made a huge difference. My third child was with my second husband and he and I were going through a long divorce. We split up during the pregnancy and it wasn't final until my son was around 18 mo and that made everything more difficult.

    We found out we all had a genetic disease but it was so rare that it wasn't known that the genetic disease was associated with FTT even though all my kids had it. We are the only family in the US with all the kids in the family having the disease. My youngest sonn is now 22 and they know FTT is a warning sign.


    Answer by Gailll at 6:31 PM on Jun. 7, 2010

  • Gaill, if you don't mind telling me, what is the name of the disease? My daughter is not fitting the symptoms for anything, but if there is something rare out there that they don't usually test for, I'd like to know about it

    Answer by CaylaLU at 6:36 PM on Jun. 7, 2010

  • Back when my youngest was a toddler and going through the FTT it was horrible. The kids had so many docs at the children's hospital and they were the only ones with their disease. They kept wanting to hospitalize my toddler for weeks at a time. My ex would tell them I was crazy and not feeding him just to make life worse. He has never even seen our son. He would find out medical info because of insurance. As soon as the divorce was final I moved so we wouldn't have to go to that children's hospital.

    FTT is a warning sign for all of the genetic immune deficiency diseases. She should have her IgG, IgA, and IgM levels checked. If she doesn't like to eat she may not like textures and have tactile sensitivities. My youngest had some problems with this too. Occupational therapy can help.


    Answer by Gailll at 6:37 PM on Jun. 7, 2010

  • Our disease is called common variable immune deficiency. I went to the immunologist last month and I guess we may be getting a new name for what we have. We are even too unusual to fit that rare diagnosis. Our immune sytems don't fight bacterial infections (B lymphocytes and low levels of IgG, IgA, & IgM) but we do really well with viral infections (T lymphocytes) and we have weird allergies (hyper IgE). My poor grandbaby (20 mo) is asleep on my lap right now covered head to toe with eczema. He has been itching it until it bleeds and has been so fussy we have to take turns taking care of him so no one goes crazy.


    Answer by Gailll at 6:48 PM on Jun. 7, 2010

  • My grandson is 20 mo and weighs about 22 pounds now. He really hasn't gained much a month since before 12 mo. He has never lost. His motor skill development and most other development is good. I go to the doctor's office with my son when he takes my grandson. My son is a RN and he is afraid he will argue so much with the doctor if he tries to put Marcus in the hospital that he will get thrown in jail and he wants me there in case they put Marcus in the hospital they would let me stay with him. My DIL works and can't deal with the whole idea of not having a perfect child. She breastfeeds and that's all we care about. He hasn't had many infections. It is so stressful. Our disease only has a 60% survival to be an adult rate and my son respects that I kept 3 kids alive and I'm the best bet to keep Marcus alive.


    Answer by Gailll at 6:58 PM on Jun. 7, 2010

  • My LO was diagnosed as FTT. She isn't. She eats constantly and is WAY below the growth chart for both height and weight. I am lucky to have a pediatrician who is like a mom and takes her overnight and has to feed her like crazy. The only thing that we found that was wrong is that my LO has REALLY bad reflux and has since she was born. She has been on prevacid for quite some time and she is gaining and growing at her own rate. I would tell your pediatrician that you don't' want to put her through anything else and you believe that she is just petite and if she is growing at her own rate and making a curve on the growth chart then I wouldn't' be concerned at all. If your child is flat lined then I would continue with the tests until you figure out what is going on. I wish you luck.

    Answer by coala at 7:04 PM on Jun. 7, 2010

  • My daughter had FTT since she was born. Her extreme prematurity I am sure had a lot to do with it. She left the hospital on bottle feeds but 2 months later had to be admitted and placed on a feeding tube. She was tube fed until 2 years old. Then she learned to eat but was still extremely underweight. The doctor didn't seem to mind too much that she was off the charts small as long as she gained. During this time we did try to push extra high calorie foods. Eventually she caught up and is now 50% for her hight and weight.

    Answer by BlooBird at 8:14 PM on Jun. 7, 2010

  • My daughter is not a FTT but I have a friends that their children are. One friend's daughter has had every test run and nothing came back. She is going on 3 and my 15 month old weighs about what she does. Around 20 pounds. She is just tiny. Very smart, meeting all milestones on time or before, energetic. So they do not know what is going on.

    Another friend of mine is dealing with some sort of genetic disorder in her daughter. She is a 6th grader and looks like she should start kindergarten.

    Good Luck and I hope all turns out well.

    Answer by vickwu at 11:22 PM on Jun. 7, 2010

  • My #3 DD between 6 months and 18 months only gained a total of about 3.5 pounds... she was charted at the 3rd percentile. She was happy, healthy, meeting all her milestones... and the pediatrician said that so long as we could still plot her and she continued to meet all other expectations, she wasn't going to worry too much about it. She's 5.5 now, and still on the small side, as I think she always will be... but perfectly 'normal' for her. Trust your gut.

    Answer by DangerousMommy at 10:19 AM on Jun. 8, 2010

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