The Hospital Is Feeding My Child Gluten!

[chrissy]

my frustration is mounting over my daughter's care while she is inpatient for her eating disorder. i was not impressed with what she was being fed while we were there and told them so. i told the clinician that i could feed my daughter better than the hospital----and now i KNOW i was right. tianna called me today to tell me they had been feeding her rice crispies. she told them she could not eat them, but they said the dietician said it was OK. today she was given rice crispies again. she told them they contained malt---but was told that the dietician said there is not enough malt in them to hurt her!!!! earlier in her stay she was fed graham crackers for a snack. she was also given a roll for a snack that i'm not sure was gluten free. while we were with her in seattle i found out she had been having problems with her rashes again----now i know why.

on a positive note-----i think our insurance is finally going to pay for my son's promethius tests.

after being frustrated with the insurance yesterday, i asked if i had legal grounds on a letter they had forgotten to send me concerning my daughter's IP stay. today i got a call from the manager of health care services telling me our claims would be in review TODAY. there will also be some people to work with me-----i guess a care coordinator? it is just amazing how quickly an insurance company will jump when you mention terms like "legal grounds" or "attorney".(especially when they have made a mistake!) and i am not even a person who believes in sueing!!!

[AndreaB]

That's awful Chrissy!

Please let us know how things work out. Is there no way to bring her home?

[Nantzie]

I'm screaming blue FURIOUS for you. I'd get her out of there as soon as possible. And the "dietician" has no business advising anyone what to feed your daughter if she doesn't know anything about celiac disease.

GAH!!! You must want to strangle somebody!!

I say, threaten to sue them into the ground. Especially the dietician.

I don't believe in suing either, but that's the only way some businesses will sit up and take notice. And that's what they have charities for. If it ever came to a financial settlement, you could use the money for gluten-free things for your family, and then donate the rest to celiac charities. Or set one up to educate dieticians on what celiac actually is.

I wonder if one of the celiac associations has any way to intervene, such as recommending an experienced celiac doctor who would be willing to call the hospital and read them the riot act.

Nancy

[wolfie]

OMG...I am so mad for you!!!!!! I would go in and speak with the dietician in person and let her/him know how upset you are and why you want to take her home. Even your DD knows she can't eat the Rice Krispies!

Good luck and please keep us posted. ((((HUGS))))))

[jerseyangel]

Chrisy--I'm also mad for you! How dare they not take the appropriate steps to feed Tianna safely. It's inexcuseable. I'm not one to sue, either--but that's what they need to hear! I hope this gets worked out quickly--can she come home yet--or would she have to go to another facility?

[CarlaB]

I would go as high up the ladder as you can, to the top person there. If they are still unresponsive, I agree, go after them!! This is awful.

[penguin]

I'm outraged!

They probably think she was just trying to get out of eating since she's there for an eating disorder. How dare the dietician say that Rice Krispies are safe! Tell her to call the company herself and ask them!

I agree, call your lawyer and have him call the highest up in the hospital you can get. Get pictures of her rashes! TAKE THEM DOWN! She's in a friggin' hospital, her care should be their primary concern, especially when the treatment revolves around food

[Daxin]

Simply Mortifing How can the dietician not know that rice krispies and graham crackers etc are LOADED with gluten, and not enough to harm her?

I hope you get some satisfaction by going up the chain there. That is terrible. Please let us know how it turns out.

[TCA]

That makes me soooooo mad!!!! I can't believe that. One positive thing I see is that Tianna tried to stop them. She didn't want to get glutened!!!!! Isn't that making progress?

[schuyler]

I agree with what everyone else said about having a lawyer contact the hightest person at the hospital.

What they are doing to Tianna is HORRIBLE. They are supposed to be helping her get better, not make her sick! I feel so bad for both of you .

Can you remove her from the hospital AMA (against medical advice)? Since she is under 18, hopefully you can. She needs to get out of there asap. Even if they do release her, I would still file something against the hospital because they were causing her harm (and they were told that what they were feeding her was harmful).

I'm sending lots of hugs to you and Tianna.

Good luck with everything

Danielle

[chrissy]

i was finally able to talk to someone "in charge" and told them the situation and requested that a TTg test be run. this should give us a good idea of what is happening with her diet. i talked to a nurse earlier who told me that tianna had not eaten the rice crispies yesterday------but i am not certain if she has been given them other times and if so, whether she ate them or not. i left a message for the dietician to call me, but did not get a return phone call.

[VegasCeliacBuckeye]

Personally,

I would send the dietician the link to this webpage, so he/she can see the outrage she is causing be her ignorance.

"A little bit won't hurt her?" --- Simply amazing (and disgusting) -- has this person been trained in anything related to Celiac Disease or Gluten Intolerance?? It sounds like they got their training at a "fly-by-night" correspondence course.

As an attorney (admittedly probably not licensed in your state so I am unable to give you actual legal advice), I can tell you that the actions of the hospital reek of malpractice and/or negligence. Furthermore, they, of all people, should know if they are poisoning their patients or not.

I would talk to the head dietician at the hospital and if that does not work then talk to the head GI doctor. If that does not work, talk to the press (and change hospitals).

[angel-jd1]

Be sure that you are keeping a phone log of any calls that you are making to the hospital. Include who you are calling, time, date, the gist of what you said/they said or if you had to leave a message. Also record if they returned your messages and such.

This will help if you have to take this any further and aren't getting any response from anyone. You then at least have some proof of what has been taking place.

You also might record the dates of when your daughter was fed offensive foods and dates of when she told them she couldn't eat the offensive food.

The more information you have the better.

Good luck, and I hope the best for your family. It is just OUTRAGEOUS that a facility is not treating her dietary needs as important! They expect her to gain weight, but feed her foods that make her sick...DUH!!

-Jessica

[Ursa Major]

I can see now why I've read that hospitals are the worst place for people with intolerances, especially celiac disease! Their dieticians are often awfully uninformed, while thinking they know everything. It is absolutely unbelievable that they will feed a kid with an eating disorder something that will make her sick! How is she supposed to want to eat, and getting over her anxiety to food, when she has a reason to be anxious? If she can't be sure the food won't make her sick, of course she won't want to eat it!

Are you able to just take her home? The hospital is not a prison, and you should be able to make that decision and have her discharged, if you feel that you can do better at home.

[chrissy]

i finally got a call from the dietician. after talking to her about my concerns i realize that she knows her stuff---she worked in a GI clinic at one time. it seems that the mistakes have come from the kitchen staff. i think that she will check on things----she said that the kitchen has certain procedures they are supposed to follow---separate cutting boards, dedicated toaster. etc. i do feel a little better about things after talking to her----but will be anxious to see the results of her TTg.

i have had a tension headache today and just that general feeling of being uptight and mentally drained. i'm so glad i have you all to talk to...........

[Nantzie]

Oh thank goodness. You hear so much about dieticians who just aren't up on current information that I never would have thought about the kitchen staff!!

You must be so relieved that it wasn't the dietician or the doctors ordering that food to be given to her.

Hopefully the dietician will be doing some hard-core training in the kitchen over the next few days.

Whew!

Nancy

[DingoGirl]

I would go as high up the ladder as you can, to the top person there. If they are still unresponsive, I agree, go after them!! This is awful.

Ditto this. I am FURIOUS for you and their complete incompetence and ignorance! Most dietitians know nothing about Celiac. I am in fact corresponding wtih one currently, a newly-diagnosed Celiac, and she is appalled that even SHE didn't know as much as she'd have like to, and is definitely going to do something about it to educate herself and her patients.

MADNESS! SUE THEM! er, at least threaten to sue them. It will get a response.

Oh, I wrote this before I read the whole thread so forgive me for ranting before I'm fully informed as to what else has gone on.....

[VydorScope]

Wait a min first you said...

tianna called me today to tell me they had been feeding her rice crispies. she told them she could not eat them, but they said the dietician said it was OK. today she was given rice crispies again. she told them they contained malt---but was told that the dietician said there is not enough malt in them to hurt her!!!! earlier in her stay she was fed graham crackers for a snack.

Then...

i finally got a call from the dietician. after talking to her about my concerns i realize that she knows her stuff---she worked in a GI clinic at one time. it seems that the mistakes have come from the kitchen staff. i think that she will check on things

This means that EITHER the dietitian to you or the staff is lieing to your daughter. No offense, but neither is acceptable. If it was my daugther, she would be home right now. What care chould she be getting in there that you could not do better at home? Or is there somthing other then feeding that they are doing?

I would definitly file a complaint with all the apporite boards/ppl/etc, and esply inform my insurance company since in the end they have the most power. If I got tht cold shoulder/brush off I would then seek legal advice.

This is simply not acceptable.

All this assumes you can trust your duagther to tell you the whole truth btw.

[Nic]

Hi, I recently went onto Kellogg's web site just to see if any of the cereals have changed (like Trix and Cocoa Puffs) and are now gluten free. I typed in a question about gluten free choices and the response was that they do not offer anything gluten free but that some Celiac's may be ok with Rice Krispies as there is only a small amount of malt in them. It went on to say to ask your own doctor or nutrionist. Maybe that is where the confusion lies. But more importantly, what makes me angry is that your daughter out right told them that she cannot eat them and she knows better than anyone what her diet should be. Even if they had read that statement from Kellogg's, she should have been offered a different breakfast if she says she can't eat it.

Nicole

[gfp]

Firstly, you need to put this in writing, whay you or your dauighter said is only as good as you can prove.

Firstly send a fax and follow it up with a registered letter.

Be VERY BLUNT !

Make a proper formal letter heading then

ATTN: XXXXXX

My daughter XXXX is in your care in ward XXXX and has on several occaisions been fed items which I do not approve of.

My daughter is a celaic and intolerant to all gluten from wheat, barley, rye and I chose not to risk oats.

Regardless of your dieticians advice I do not allow my daughter to eat rice crispies or graham crackers.

I require a declaration as to why she has been given these foods when she expressed concern that she could not eat them. My opinion as the parent and legal guardian of my child is that any food deemed not 100% gluten free is not risked. I make no exceptions to this.

I require these answers in writing.

I have sent my daughter a set of sterile bags and she will be keeping a part of each meal in these. If the dietician tries to tell her what she can and cannot eat again the next letter will be from my lawyer.

I require that each item she is fed be listed and signed off on her medical sheet. I require a copy to be left with my daughter daily. She is to be fed nothing that is not listed or the next letter will be from a lawyer.

Should my daughter have any further symptoms of celaic disease then the samples will be analysed and if found positve the next letter will be from my lawyer.

[chrissy]

they are doing more than just feeding her---there is therapy and classes and medical monitoring. we don't have a team set up to work with her locally yet, and her weight and health are still so close to the edge that she could back slide easily and quickly without the right kind of help (and end up right back in the hospital)-----so pulling her out of the hospital is not really an option.(although we have considered it) living in rural, southern idaho doesn't offer us much of a selection of medical help for problems that require special training.

there will be a team meeting on monday. i am going to tell them that i understand that an occasional mistake can be made-----but i should be hearing about it from someone on staff----not from my daughter. i also feel that the staff should be informed that just because "celiac diet" is written on her chart, does not mean that everything that comes on her tray is going to be safe----obviously mistakes get made. i don't know who said there was "not enough gluten" to hurt her because the dietician was aware that rice crispies were not safe. i am wondering if it was someone who thought she might just be trying to get out of eating----or one of the staff that assumed anything sent to her from the kitchen must be safe. i'll be glad to see her TTg results.

a few years ago i got a call from the school principal telling me that my daughter had been playing and there had been a slight argument over a pile of grass (kids!) and another child had pulled on the back of her coat and molly had gotten a zipper burn on her neck. she wasn't hurt, and it really was no big deal---the principal just wanted to make sure i knew what had happened. i could have been really concerned if my daughter had come home from school with what might have looked like a rope burn on her neck and then tried to extract the story from a grade-schooler. this adult was on the ball when it came to dealing with parents. i am expecting that the hospital should be able to do the same for me.

[powderprincess]

I'm outraged!

They probably think she was just trying to get out of eating since she's there for an eating disorder. How dare the dietician say that Rice Krispies are safe! Tell her to call the company herself and ask them!

That was my first thought as well! So wrong. So sorry your family has to go through this.

Firstly, you need to put this in writing, whay you or your dauighter said is only as good as you can prove.

Firstly send a fax and follow it up with a registered letter.

Be VERY BLUNT !

Make a proper formal letter heading then

ATTN: XXXXXX

My daughter XXXX is in your care in ward XXXX and has on several occaisions been fed items which I do not approve of.

My daughter is a celaic and intolerant to all gluten from wheat, barley, rye and I chose not to risk oats.

Regardless of your dieticians advice I do not allow my daughter to eat rice crispies or graham crackers.

I require a declaration as to why she has been given these foods when she expressed concern that she could not eat them. My opinion as the parent and legal guardian of my child is that any food deemed not 100% gluten free is not risked. I make no exceptions to this.

I require these answers in writing.

I have sent my daughter a set of sterile bags and she will be keeping a part of each meal in these. If the dietician tries to tell her what she can and cannot eat again the next letter will be from my lawyer.

I require that each item she is fed be listed and signed off on her medical sheet. I require a copy to be left with my daughter daily. She is to be fed nothing that is not listed or the next letter will be from a lawyer.

Should my daughter have any further symptoms of celaic disease then the samples will be analysed and if found positve the next letter will be from my lawyer.

that's a great letter!