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Failure To Thrive

Mommy2Ellie

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Mommy2Ellie Rookie
Mommy2Ellie
Posted

Ellie was "officially" labelled FTT at the doctors yesterday. We saw it comeing, but it was still really upsetting. We're devastated. We don't even know if this gluten-free thing is going to work. It really was just a shot-in-the-dark. If it doesn't work, then we're back at square one only WORSE. Ellies getting worse all the time. Its heartbreaking to see any child go downhill, worse even when its your own.....Is there any other FTT babies here? Ellies 16 months.

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TrillumHunter Enthusiast
TrillumHunter
Posted

What a tough label!

I don't know any babies but I'll share this. A woman I've know for about eight years had always been sick. Each time I saw her, she was worse. Two years ago she was on oxygen and really looked like a skeleton. The last time I saw I really thought she wasn't going to make it. Finally she was diagnosed with Celiac and started the diet. I saw her last week and almost didn't recognized her. She looks 20 years younger and was the picture of health. Such an amazing transformation!

I hope that gluten is the issue and you have an amazing turnaround with your little one.

ShayFL Enthusiast
ShayFL
Posted

Me too. I hope gluten-free is the answer. Try cutting the dairy at least for a few months too to give her time to heal. Soy could also cause problems. Keep her with simple foods as much as possible. Meats, veggies, fruits, nut butters, rice cakes, rice, sweet potatoes and winter squash are excellent and kids usually like them.

dandelionmom Enthusiast
dandelionmom
Posted

My daughter was FTT too. It really is just the medical term to say they're not gaining enough weight. That's all it means. It doesn't mean that she's behind or anything. My daughter quickly went back up the charts once we found out that celiac disease was the problem.

I know it is hard to hear but it really isn't as bad as it sounds.

Rook's Mommy Apprentice
Rook's Mommy
Posted

Oh I hate that label. My son was label failure to thrive up until two months ago. We are back on the chart even at 3%.

How long has your little one been gluten-free?

My son started gain with much work from us. He can have dairy so we feed him milk shakes with protein milked in it twice a day. Butter goes into everything!

I hope Ellie starts gaining for you. I know how heart breaking it is.

angigz32 Newbie
angigz32
Posted

My son was failure to thrive and still is..... he has a feeding tube in his stomach. Long story Please look at his jornal on www.caringbridge.org/co/zack..... all I can say is still we are trying to figure out what is going on. You name it and we tried it. Just a long journey for myself and son. We go to the GI doc Oct 29, 2008 and have a test done for villi sence now we can look for it, because he is trying more foods. Gene test was neg, for celiac. But doc says since he never ate before we couldn't find villi. Oh blood test came out positive for celiac sprue (a small perctage). He eat some foods and is on a pre disgested food at night through feeding tube. I've heard my son's jorney to find out what is going on is one in a few? Angie ;)

purple Community Regular
purple
Posted

I am praying for Ellie to be healed. May God bless her. ;)

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crittermom Enthusiast
crittermom
Posted

My heart goes out to you and Ellie. I hope you find your answers to help her feel better soon. Michael was not FTT but was very low on the weight gain charts. The doctors told me to up his calorie intake as much as possible, this is difficult with diet restrictions and picky eaters, both of which he has/is. I "hid" a lot of things in his regular food! Good luck and I will keep you both in my thoughts!

Jules Rookie
Jules
Posted

I too have a 29 month old daughter who at 23 months decided she was done eating and starting and fell off the charts - she was 18 lbs at 2 years old. No one knew what was wrong. She is now on a feeding tube and is still not eating enough to live on on her own. We go again on Monday for a Mikey button to be placed in her stomach. We has one test after another done and the only thing we came up with was early warning signs for Celiac disease but she tested negative for all in blood work. This was found in an endoscopy. They will biopsy again on Monday to see if we see any changes but so far gluten free has not changed her in any way and we are 6 months into this thing. So I am still not convinced she has it. She has gained weight and is now on the charts but I feel that is only because of the feeding tube.

I hope things go ok for your daughter and you find a diagnosis for her and if it is Celiac's that she gets better quickly once she is gluten free.

I am using my OT's login right now so I am not sure if I can post my email for you to use or how to send you something personal as I would love to chat with you.

Bonnie

Mom to Genna

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Please look up this thread Open Original Shared Link and read it all the way through (long thread, I know).

The mom of this baby was an engineer, so she kept charts of everything that her daughter ate AND everything the mom ate, as she was breastfeeding.

She proved to her doctor that foods the baby was sensitive to went through the breastmilk. That child was sensitive to LOTS of foods, AND had multiple issues, but she is doing well now.

Another 2 likely possibilities could be:

1)Vaccine reactions (including mercury toxicity--the flu shot contains thimerosal, as do old stores of vaccines that the doctors might still be using up)

2) Lyme disease (can be transmitted from the mom during pregnancy)

This are admittedly long shots, but in extreme cases like this, you don't want to leave any stone unturned!

Best of luck to all of you.

nitu-752002 Apprentice
nitu-752002
Posted

Hi

My DD is 28mths old and weighs about 22lbs :( The dr hasnt labelled her FTT but i feel awful that she is so underweight. She had dairy and soy intolerance, thought may be wheat was a problem so i removed all gluten from her diet about 2 weeks ago. The only issue she had was constipation or watery (not formed) stools and was underweight. Anyway, it has been about 2-3 weeks since i took her off of all gluten and i really dont see much different but i plan to try this for 3mths.

I know how you feel about trying to up the weight. The dr suggested i give her duocal and neocate but i havent started yet because of not having normal stools yet and i dont know if she will tolerate this or not. I have also started to give her more fried food and continuing to add more oil to her foods. I hope we both have better luck with weight gain soon.

Nitu

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      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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      High DGP-A with normal IGA

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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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