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Help- Sick Children Taken Away From Us

scaredfatherof3

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scaredfatherof3 Newbie
scaredfatherof3
Posted

I am a father of 3. My oldest eats from a feeding tube. In November 2013 my (then) 3 yr old began to vomit after every meal and went from horrible constipation to horrible diarrhea accompanied by diaper rash. Over the next month sge lost weight and was diagnosed with failure to thrive for the 3rd time in her short life. Diet was changed to triple the calories and more than quadruple the amount of food taken in during each feeding. She was on antibiotics in the hospital and initially showed weight gain. When discharged we weren't home for five minutes when the vomiting began. After almost every meal she puked every drop of formula up. We returned to the doctor who simply told us to feed her exactly as she said to feed her and she will gain weight showing no concerns for her vomiting. One month later she was diagnosed with failure to thrive again. The next day was the worst day of my life... my local sheriff's office showed up at my door and took my two youngest children from me physically removing my 16 day old son from my arms. Our doctor that we trusted and went to with our concerns expecting sound advice had gone to the authorities claiming we were starving our oldest daughter. Having never listened to our concerns when we tried to tell her that her body was starving her and going to kill her if she didn't change something. We have been locked in a battle to get our babies back since january 27th (the oldest was taken from the hospital by dfcs) we can only afford public defenders (who seem to not want to get anything done) we need help. It occured to us this week that celiac runs in my wife's family. After many tests and her removal from us the problem still persists. She will be tested for celiac this coming week. Her foster parents are baffled as to why with the problems still occurring we still dont have our children and so are we any suggestions?

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Questore Rookie
Questore
Posted

I am a father of 3. My oldest eats from a feeding tube. In November 2013 my (then) 3 yr old began to vomit after every meal and went from horrible constipation to horrible diarrhea accompanied by diaper rash. Over the next month sge lost weight and was diagnosed with failure to thrive for the 3rd time in her short life. Diet was changed to triple the calories and more than quadruple the amount of food taken in during each feeding. She was on antibiotics in the hospital and initially showed weight gain. When discharged we weren't home for five minutes when the vomiting began. After almost every meal she puked every drop of formula up. We returned to the doctor who simply told us to feed her exactly as she said to feed her and she will gain weight showing no concerns for her vomiting. One month later she was diagnosed with failure to thrive again. The next day was the worst day of my life... my local sheriff's office showed up at my door and took my two youngest children from me physically removing my 16 day old son from my arms. Our doctor that we trusted and went to with our concerns expecting sound advice had gone to the authorities claiming we were starving our oldest daughter. Having never listened to our concerns when we tried to tell her that her body was starving her and going to kill her if she didn't change something. We have been locked in a battle to get our babies back since january 27th (the oldest was taken from the hospital by dfcs) we can only afford public defenders (who seem to not want to get anything done) we need help. It occured to us this week that celiac runs in my wife's family. After many tests and her removal from us the problem still persists. She will be tested for celiac this coming week. Her foster parents are baffled as to why with the problems still occurring we still dont have our children and so are we any suggestions?

 

Have the Foster Parents put your children on a gluten free diet?

nvsmom Community Regular
nvsmom
Posted

The tests that should be done for celiac disease are:

  • tTG IgA and tTG IgG (anti-tissue transglutiminase)
  • DGP IgA and DGP IgG (deaminated gliadin peptides)
  • EMA IgA (endomysial antibodies)
  • total serum IgA - a control test
  • AGA IgA and AGA IgG (anti-gliadin antibodies) - an older and less reliable test

The DGP IgA and IgG are the best tests for young children, followed by the tTG tests. The EMA IgA is positive in those with advanced damage - not positive as often in young children.

 

They must be consuming gluten (about a slice of bread, or the equivalent, per day for 8-12 weeks prior to testing to achieve the most accurate results possible. Young children do tend to have more false negative results though. One theory for that is the children have not been exposed long enough to build up enough autoantibodies that while show up in testing.

 

An endoscopic biopsy requires 2-4 weeks of gluten but it's a more invasive procedure.

 

Here are some reports to back it all up:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

And an interesting blog:

https://www.celiac.com/gluten-free/blog/1038/entry-1967-gluten-intolerance-can-actually-be-subclinical-celiac-disease/

 

I am sorry this has happened to your family.   :(  I hope the kids are well soon and this mess gets sorted out quickly...  Best wishes.

1desperateladysaved Proficient
1desperateladysaved
Posted

I believe it to be a very good thought to test for celiac.  It is expected that the foster parents are having trouble.  Hopefully you will soon get them back when the truth is discovered.  I am praying for your family that you will get definitive answers and they will be home and healthy soon.

 

This one tears my mother's heart in pieces.  Please let us know of your progress.

BlessedMommy Rising Star
BlessedMommy
Posted

I am so, so sorry for the pain that your family has been through. It does sound like celiac could be a possibility for them. I hope that you get a definitive answer soon. 

mommida Enthusiast
mommida
Posted

Sorry you are going through this.

 

Demand medical testing!  A full scope with biopsies will be able to tell the story.  At this age there can be more than just Celiac going on.  (there should not have been any gluten in the formula?  Any breast milk? (the mother may have been passing gluten and Celiac antibodies if she has not been diagnosed)

 

May daughter projectile vomited the "hypo allergenic formula" and was later diagnosed with Celiac (16 months old) and Eosinophilic Esophagitis (6years old).

 

At this age doctors should be looking for a congenital defect.

cyclinglady Grand Master
cyclinglady
Posted

To understand celiac disease further and to print off a list of symptoms and recommended tests to share with doctors, check out the University of Chicago's celiac website:

Open Original Shared Link

My heart goes out to you and your family!

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cyclinglady Grand Master
cyclinglady
Posted

Have the Foster Parents put your children on a gluten free diet?

The foster parents should not start a gluten free diet! You have to be consuming gluten in order to be properly tested. A definitive diagnosis would be best in this instance so that this family can be reunited.

kareng Grand Master
kareng
Posted

I am curious.... What is the diagnosis used to justify a feeding tube? That is not a normal way to feed a child. What sort of follow-up or additional treatment/ tests are ongoing?

1desperateladysaved Proficient
1desperateladysaved
Posted

Any updates?

frieze Community Regular
frieze
Posted

if this OP is genuine, and the PTB found out they were posting here, they may have been told to stop.

LauraTX Rising Star
LauraTX
Posted

if this OP is genuine, and the PTB found out they were posting here, they may have been told to stop.

I just first read this thread and was about to post to tell them to speak to their lawyer before posting any more.  Hopefully they at least got the feedback from the replies, I wish them the best.

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