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They Messed Up The Samples On My Daughters Biopsy


Electra

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Electra Enthusiast

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!!


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JennyC Enthusiast

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. :(

Phyllis28 Apprentice

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.

Izak's Mom Apprentice
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.

janelyb Enthusiast

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.

iluvbread Newbie

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.

Electra Enthusiast

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!!


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Fiddle-Faddle Community Regular

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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    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
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      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
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      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
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