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Baby Has To Have A Biospy?! Nervous!


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10 replies to this topic

#1 mmcc54

 
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Posted 14 June 2013 - 11:07 AM

Hi So my one year old had a pos blood test (16 anything over 6 is pos) Her dr said its actually unusual for a baby to get a pos..im curious if anyone knows why..I should have asked but was in a state of shock so questions weren't coming to mind at the time. They are strongly recommending doing a biopsy...we have another apt before then so I will ask more questions but just curious as to what they look for and why do the biopsy if her blood work is pos? Also how is the biopsy done on such a small baby?


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#2 kareng

 
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Posted 14 June 2013 - 11:21 AM

It is hard to get a positive blood test from a small child because they have not been eating gluten for very long and they don't always make the antibodies in large enough quantities to get a positive test.  I'm looking for a link to that info and will attach it here:

 

http://www.curecelia...-celiac-disease

 

 

http://www.curecelia...hen-he-is-older


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Thanksgiving dinners take 18 hours to prepare.  They are consumed in 12 minutes.  Half-times take 12 minutes.  This is not a coincidence.  - Emma Bombeck
 
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#3 StephanieL

 
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Posted 14 June 2013 - 04:44 PM

We got a second opinion and still waited to do the biopsy when we were going through it. I was so scared and uneasy about it.

 

Looking back, it was WAY harder on me and Dad than it was on kiddo ;)  It is hard and scary and that won't change if she's 1 or 21 I don't think.


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#4 GottaSki

 
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Posted 14 June 2013 - 04:51 PM

Was just going to post about what Stephanie said.

 

This will be harder on you then her.  Try to calm yourself and bring things she loves to be distracted.  It will be over quickly and the information obtained is worth it -- IMHO :)

 

Hang in there Mom and Dad -- oh and get yourselves or any siblings a full celiac panel once things calm a bit -- Celiac Disease is genetic.


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#5 kareng

 
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Posted 14 June 2013 - 04:57 PM

My son, now 20 yrs, had to have a tongue tie release surgery when he was 10 months. The worst part was he wanted to eat so we had to distract him. After it was over, they gave him bottles of half sprite half water. He had never had any juice or soda before. He loved it. Had a second bottle. It was done very early in the morning and he never took a nap the rest of the day. It was the best sleep he had ever had. I think he was under 20 minutes and maybe slept another 20-30 mi uses in recovery.

Schedule the procedure for the first one in the morning. She will be hungry when she wakes up and you don't want to have to wait until noon with a hungry baby.

P.S. she is sooooo adorable!
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Thanksgiving dinners take 18 hours to prepare.  They are consumed in 12 minutes.  Half-times take 12 minutes.  This is not a coincidence.  - Emma Bombeck
 
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#6 momma bee

 
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Posted 14 June 2013 - 06:01 PM

My little one was 16 months for hers and I was not keen on it, she was having adenoids out as well, but to be honest she did way better with it then my 3 year old! As mentioned, harder on you then her! She was similar in that could not get enough to eat and just wanted to cuddle and sleep. Slept a lot that day and cuddled a lot and was "normal" by the next day and that was with the adenoids surgery and exploration of sinuses as well... She had Tylenol for pain right after and for a few days, but if they had done just then scope they said she would likely only need one or 2 doses of plain Tylenol so not much pain to plan for.

My personal opinion and nit a medical one, but just as a.mom with a newly diagnosed baby too is that it is good to get it done and not need to do a gluten challenge down the road if there is any confusion and questions later... We had negative blood work but a positive biopsy and I must admit even 3 months later my mind still makes me think "what if it was wrong" so I am glad to have the biopsy results personally to be sure and keep us all committed to the gluten free life! But man have we seen good improvement in her! Wouldn't change back for anything now... Still struggling with her but she is so much happier and healthier already! I hope your daughter soon will be too!


And I agree that the earlier in the day the better so they don't keep her hungry for long!
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#7 mmcc54

 
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Posted 15 June 2013 - 04:09 AM

Thank you so much everyone :) Im gathering a list of questions to bring with me to the appt...Im happy this is being caught so early in her life so it wont be so hard on :/ Im breastfeeding still so I also have to go gluten free (after the test) so im hoping its not going to be too hard either...thank you all so much :)


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#8 mommida

 
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Posted 15 June 2013 - 06:21 AM

It has been standard procedure to do the patients by age.  The youngest ones first. 

 

Remember the biopsy can rule out other issues too.  It will give a baseline of any damage to be healed.

 

Like most have said, it seems harder on the parents.  Keeping your little one "resting" after the procedure may be a challenge.


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Michigan

#9 StephanieL

 
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Posted 15 June 2013 - 06:44 AM

Breast milk is considered a clear liquid and you should be able to nurse her a bit closer to the time of the procedure. You need to check with the Dr's.

 

http://kellymom.com/...y/baby-surgery/


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#10 greenbeanie

 
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Posted 16 June 2013 - 10:35 AM

My daughter, who just turned four, had her endoscopy a few days ago. The children's hospital unit where they did it was really excellent. Someone stayed with us in the prep area beforehand and blew bubbles and painted with my daughter, then put a blood pressure cuff and gas mask on the stuffed animal she brought before they did hers, etc. They let me stay with her in the procedure room until she fell asleep, and they only put the IV in once she was already out. The procedure was really quick, and all the nurses and doctors were very nice and upbeat. My daughter had so much fun there that she didn't want to leave!

I'm glad they did the endoscopy, even though her tTG-IgA was over 16x the positive value, and her DGP tests were very solidly positive too. I think it's best to get all the testing done now so that we never have to go back and do a gluten challenge later.

If you can get the endoscopy done at a children's hospital, that's the best! Their extensive experience with little kids was a huge benefit. I wish all nurses had that kind of training!
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Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosis still unclear after extensive testing: Atypical wheat allergy, severe NCGI, or false negative celiac tests? Doctors disagree.Gluten challenge caused acute gastritis, esophagitis, and angioedema that lasted 4 months and was eventually determined to be a sulfite allergy. Gluten light for 15 years, then gluten free since June 2013.
Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Improved greatly within six months of going gluten-free.


#11 mmcc54

 
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Posted 17 June 2013 - 03:33 AM

Thank you everyone!! She goes for her weight check today..nervous I hope she has gained some weight! If not her pedi will try and push up her GI apt which isn't until July 3rd :( its refreshing to read your stories and know we aren't alone in all of this! Im also going to push the pedi orders tests for us all today because we will all be going gluten free after her biopsy!


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