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Electra

They Messed Up The Samples On My Daughters Biopsy

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They sent the wrong skin samples for the opposite testing, so my daughter screamed and cried and got emotionally scarred for life with the IV's and crap and they have to re-do the damn biopsy. She has a scar now that I didn't even want her to have and now they tell me that she will have another one. I'd like to scream right now UG!! What in the hell are these people thinking? If you do a test like this on a 2 yr. old you better get it right the first time around. The doctor assures me that the hospital will pay for the tests since they messed it up, but I don't care about that part I care about my daughter going through that ordeal again and about her having another scar on her little body. This is just absolutely rediculous. Why don't they just diagnose her with DH already and just call it good. CALGON take me away LOL!!


~~Angie~~

DX'd With Narcolepsy In 1995

Dx'ed With Celiac On 12-18-06

Positive Biopsy On 2-1-07

DX'd With Pernicious Anemia 4-24-07

Daughter Has DH, so I suspect she also has Celiac!!

"If Alcoholism was Celiac Disease they would make us drink ourselves into kidney failure before they would admit we had the disease"

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That is absolutely horrible!!! They should pay for more than the second test! You should be able to request/demand that they give her gas (nitrous oxide?) before they insert the IV. She will be totally out and will not even feel the IV. Since she will be asleep an anesthesiologist will need to be present. They should have no problems accommodating your request. If I were you I would demand that she be asleep, even if she has to get the procedure done somewhere else. Poor little girl. :(


Jenny

Son 6 yrs old, Positive blood work, Outstanding dietary response, no biopsy.

Household mostly gluten free since 3/07

Me: HLA-DQ 02 & 0302 (DQ 08), which I ran & analyzed myself!Currently gluten lite, negative tTG, asymptomatic

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That's terrible.

I do not know if the medicine still exists, when my son was little the doctor prescribed a topical cream that we put on and covered about an hour before any needles. It numbed the area so the needle would not hurt.


Phyllis

Gluten Free - 30 years

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That's terrible.

I do not know if the medicine still exists, when my son was little the doctor prescribed a topical cream that we put on and covered about an hour before any needles. It numbed the area so the needle would not hurt.

it's called EMLA cream - it's a topical anesthetic. you put it on for an hour beforehand under an occlusive dressing (like saran wrap) and then the area is totally numb for a couple hours.


DS1&only(so far!): born 7/12/05 * chronic diarrhea from age 5 mos. * WF/gluten-free from age 9 mos. * NO MORE LOOSE POOP!

10/19/2006 Tested positive for DQ2 Heterodimer (HLA DQA1*05/DQB1*02) and negative for HLA DQ8. Have followup appt. with ped. GI in December!

Update: Told GI I was unwilling to do serum tests (give him gluten). GI said if what I was doing works, then keep on keepin' on! Happy, healthy & nearly two now! Occasional rash & loose poop from drinking bathwater, so switching to all gluten-free beauty/personal products.

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If it were me they'd be hearing from my lawyer once I had hired a good one. And actually if she responds to the diet once you start that is proof enough than a 2nd biopsy.


Janel (me): gluten-free since 4/10/07; casien free 5/1/07;soy light 10/07

**LOST 35 lbs since April 2007(much needed weight loss)**

ds(6 yrs)- gluten-free since 3/19/07; casein free 5/2/07;soy free 10/07

HLA-DQ 3,3 (Subtype 7,7)

new dx= Hirschsprungs Disease w/cecostomy

the non believers, only allergen free eatting at home because they have to be:

Hubby: refuses to eat Gluten-free Casein-free except for dinner

dd(14 yrs)- refuses to go along with any special dietary retrictions *I suspect dairy/wheat intollerant*

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Seriously, I would have them pay for their screw up and not take her back. Just take her off Gluten. I have life long phobias from early childhood experiences like these. So I would not be inclined to do it again. You get one chance with me and then I'm done.

If you do have them redo it, make sure they knock her out lightly.


Gluten free: May 26, 2007

Looking into Enterolab testing currently, do not want to diagnose through a Dr

Mom of 2

Son with wheat intolerance via breast milk

Daughter seems fine? (but... likely not)

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Thanks everyone for the support. She has actually had the cream before and it didn't help at all. She's only 2 and a half so the fact that they are holding her down to stick a needle in her outweighs any chance that she may not even feel it. She just freaks out because they are trying to hold her still and stab her, so she's not reacting to the pain as much as them doing things to her that scare her.

The anesthesiologist told us that the medicine they gave to sedate her didn't work in her case and that next time he recommends they give a quick shot that will put her completely out and then after she is out they put the IV in. He said he would not recommend EVER putting an IV in again with her awake, because it will traumatize her.

I haven't made a decision on weather I will allow her to have another surgery or not. I guess it depends on if she ever breaks out as bad as she did the first time. That is the only time we've ever seen it get that bad and it's been very mild since, so I'm hoping it's not DH and it's just something she'll grow out of, but only time will tell.

Thanks again for all the support and advise!!


~~Angie~~

DX'd With Narcolepsy In 1995

Dx'ed With Celiac On 12-18-06

Positive Biopsy On 2-1-07

DX'd With Pernicious Anemia 4-24-07

Daughter Has DH, so I suspect she also has Celiac!!

"If Alcoholism was Celiac Disease they would make us drink ourselves into kidney failure before they would admit we had the disease"

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I would not recommend a biopsy if the outbreak is not very bad. I had one that turned out negative (and left me with two HORRIBLE scars) because I had been on Prednisone the month before and had been gluten-free for a month--and the doctor didn't tell me that that would screw up the results. In my case, I believe that it WAS DH because I have not been able to find another cause for a totally symmetrical-on-both-arms blistering oozing rash and my IgG was through the roof.

I agree with everyone else that you should contact a lawyer. Scarring a child and putting her through major stress for nothing because the doctor screwed up is clearly malpractice.

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