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?
Asked by Anonymous at 6:24 PM on Jun. 7, 2010 in Toddlers (1-2)
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
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
Answer by coala at 7:04 PM on Jun. 7, 2010
Answer by BlooBird at 8:14 PM on Jun. 7, 2010
Answer by vickwu at 11:22 PM on Jun. 7, 2010
Answer by DangerousMommy at 10:19 AM on Jun. 8, 2010
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