Not A Helpful Nurse

[crittermom]

OK, so I talked to the GI nurse today about Katharine's levels still being elevated. When I spoke with her I asked her to varify Katharine's IgA results that I received yesterday and yes after 1 year she is at 80.1 (she started at 104). I can't imagine that she has been there, because she was feeling better I think that she has gotten gluten somewhere lately. All the nurse kept saying is that she is stealing food. I was trying to be diplomatic and tell her it is possible but not probable as it is basically impossible to get Katharine to eat anything. I have tried that idea of put the plate infront of them and if they don't eat don't give them anything until the next meal...she went 4 days without eating basically anything at all. She is as stubborn as they get. She has gotten better at eating in the last month but not much. When I tried to talk to her about other things like cooking utensils or pans she had never heard of any such thing being a problem and just kept telling me that she is sneaking food.

It was very frustrating and I am not sure that I handled it very well as I just kinda let it go. She was typing the whole time so I think she was noting our conversation.

OK finally a question...

Has anyone else ever dealt with this? Did you force the issue or just let it slide being that you know your child and the nurse is giving advice based on general behaviors of 5 year olds? Incase I ever run into this again how does anyone else handle it?

[gfpaperdoll]

are you keeping gluten food in the house????

Do you know how to bake gluten free???

[Guest andie]

Hi

some kids are what we call 'grazers'. they never actually eat a meal per say, but snack the entire day through. my niece is like this. it drives me crazy because i feel like i'm never out of the kitchen!

her mom is constantly setting small snacks on the table. small amts but lots of variety.

another thought is that she has felt so bad after eating in the past that to her eating is a punishment. my son is like that. he would rather feel starving then what he feels after eating gluten. he has been undiagnosed for 10 years and just got used to feeling bad. food holds little appeal to him, although he does get hungry.

another thought, if she is really stubborn, maybe it is the control thing. does she get alot of say in what she's to eat? if I buy my daughter clothes (she's 7) she absolutely will not wear them. the closest she gets is taking them back to the store and picking out another color. that sounds spoiled i know, but with stubborn children you have to pick your fights. that one's not worth it. i just take her with me.

what about grocery shopping with her just for her? plan lots of time. read the labels together. have a list of do's and don'ts before you go. compare the list with ingredients lists on the package. she will be absorbing alot more than you think. they're sponges at that age.

a last resort could be bribery. she sticks to the diet for 2 months and if no better gets to pig out on her favorite food or a toy? if she is indeed celiac she will be feeling better by then and may not want it. I tried this with my son. we gave it 6 months and if no better we would quit. (he was not happy about giving up his 'comfort' food. after 2 months i have heard him tell his friends 'I can't have that.

It makes me sick.' he now reads every label.

Hope this helps

Andie

[crittermom]

We do have gluten food in the house because I live with my parents right now (husband just got back from the middle east) but it is put where she can't get it. My parents are about the most supportive people when it comes to this! My dad won't give her anything but fruit because he is afraid to make her sick and my mom is like a gluten buster! I have all Kinnikinnick products for bread and pizza crusts and use Tom Sawyer flour to bake everything else in brand new never touched by gluten pans. I also call the manufacturers of "regular" food fairly regularly to recheck and I always read the labels on everything I buy even when it is something I buy every week, just in case! It almost becomes a habit!

[crittermom]

Thanks Andie, I have tried lots of those suggestions to no avail but there were some good new ones in there! I think you nailed it with the control thing. She does choose parts of her meals, if I let her choose all it would be gluten free cheese and mac for every meal! I add meats and veggies to the favorite she picks. I have seen a trend that if I prepare the food and leave the room and my mom stays with her while she eats, there are no battles and she will clear her plate. I think I will try this for a few meals and see if I can break the power struggle cycle. Maybe I will take that long awaited bubble bath I have been waiting for!

It's also nice to hear that there are others fighting the uphill battle. She did feel better for awhile which is why I think that the gluten is a new thing, I have been racking my brain for 2 days and the only thing I can come up with that changed is the lactaid milk. We will keep working at it, thanks for the advice and support.

[Guest andie]

OK, so I talked to the GI nurse today about Katharine's levels still being elevated. When I spoke with her I asked her to varify Katharine's IgA results that I received yesterday and yes after 1 year she is at 80.1 (she started at 104). I can't imagine that she has been there, because she was feeling better I think that she has gotten gluten somewhere lately. All the nurse kept saying is that she is stealing food. I was trying to be diplomatic and tell her it is possible but not probable as it is basically impossible to get Katharine to eat anything. I have tried that idea of put the plate infront of them and if they don't eat don't give them anything until the next meal...she went 4 days without eating basically anything at all. She is as stubborn as they get. She has gotten better at eating in the last month but not much. When I tried to talk to her about other things like cooking utensils or pans she had never heard of any such thing being a problem and just kept telling me that she is sneaking food.

It was very frustrating and I am not sure that I handled it very well as I just kinda let it go. She was typing the whole time so I think she was noting our conversation.

OK finally a question...

Has anyone else ever dealt with this? Did you force the issue or just let it slide being that you know your child and the nurse is giving advice based on general behaviors of 5 year olds? Incase I ever run into this again how does anyone else handle it?

Melissa

just another quick thought.

What about moving the stuff that's not gluten free out of range and moving the gluten free stuff down? Maybe she's cheating because she IS hungry but not going to let you know it. Therefore she is eating what's handy. She's probably not hungry when you cook for her because she already ate something you don't know about.

About the control thing. try to negotiate with her now. Don't let her win all the battles in this area.

She's 5. Imagine 15! I have 4 kids. 2 of which are teenagers. Let her snack when she wants, but make sure gluten free is all she can reach.

One other thing. You sound defensive about the nurse. Maybe i'm reading this wrong, but her role is to be supportive in what you're trying to do, not put you on the defensive. You have no obligation to explain yourself to her and are trying to manage as best you can. sounds like she needs a refresher course in supportive care to patient AND family!

Good luck. sounds like you have great parents!

Andie

[Piccolo]

Melissa,

If this is any news to you my now 18 year old son ate macaroni and cheese for has main food for about 10 years before he ate everything. His health did not suffer because of this.

Susan

[crittermom]

Melissa,

If this is any news to you my now 18 year old son ate macaroni and cheese for has main food for about 10 years before he ate everything. His health did not suffer because of this.

Susan

Thanks susan! That is good to hear. You know the kids are resilient but it's a mom's job to worry! I make home made mac and cheese and hide an egg in it that she doesn't know about, so at least there is some comfort that she is getting some of that egg as well! SOmetimes we just have to be tricky!

[mommida]

If it is joust a control thing, let her make some of the decisions. Apple or orange, make sure you can have the options ready for her choices. It will teach her to make healthy decisions for her lifelong diet.

If she still has elevated levels, her tummy must still hurt.

L.

[JennyC]

Could she be getting gluten from toiletries, yours, hers or from grandparents. My son was getting glutened from his Zooth/Oral-B toothpaste. (They make a lot of the character toothpastes.) Are the soaps gluten free? What about every one's lotions and haircare products?

[crittermom]

Could she be getting gluten from toiletries, yours, hers or from grandparents. My son was getting glutened from his Zooth/Oral-B toothpaste. (They make a lot of the character toothpastes.) Are the soaps gluten free? What about every one's lotions and haircare products?

OH MY GOSH, OH MY GOSH, OH MY GOSH!!!!! Jenny I love you! We used Oral-B toothpaste. I have tried calling but couldn't get through and was going to try again tomorrow! She has been using crest kids now for about 3 weeks (2 weeks to the date of the test) definitley not enough time to drop the numbers! She loved it too,the oral B, she would suck down an entire tube literally if I didn't catch her! I checked out the crest before we started and it was fine as most of you know. I could absolutely swear that I called Oral B when this started and they said it was fine, I called EVERYTHING! But maybe in the flurry the Oral B got left out. I am just so happy that you all helped me find this! I have taken many of your suggestions and put them to work and I am happy to report that Katharine is starting to feel much better (especially after nixing the Lactaid as well). She also ate a plate of chicken last night, wanted more for lunch today, and had a plate of sausage at dinner along with seven green beans! That's right seven! Before we could maybe get a nibble! OK I will stop rambling now I am just so happy and thrilled that I figured this out and I can make my baby better! Thanks again sooooo much to everyone for your support for my little ladybug!

[crittermom]

OH MY GOSH, OH MY GOSH, OH MY GOSH!!!!! Jenny I love you! We used Oral-B toothpaste. I have tried calling but couldn't get through and was going to try again tomorrow! She has been using crest kids now for about 3 weeks (2 weeks to the date of the test) definitley not enough time to drop the numbers! She loved it too,the oral B, she would suck down an entire tube literally if I didn't catch her! I checked out the crest before we started and it was fine as most of you know. I could absolutely swear that I called Oral B when this started and they said it was fine, I called EVERYTHING! But maybe in the flurry the Oral B got left out. I am just so happy that you all helped me find this! I have taken many of your suggestions and put them to work and I am happy to report that Katharine is starting to feel much better (especially after nixing the Lactaid as well). She also ate a plate of chicken last night, wanted more for lunch today, and had a plate of sausage at dinner along with seven green beans! That's right seven! Before we could maybe get a nibble! OK I will stop rambling now I am just so happy and thrilled that I figured this out and I can make my baby better! Thanks again sooooo much to everyone for your support for my little ladybug!

OK so my euphoria was short lived! We used ORAJEL not Oral B. BTW Orajel toddler training toothpaste is gluten and casein free! So we are continuing the mad hunt. Thanks again for everyone's help and support.

[Guest j_mommy]

Just wanted to let you know that you have every right not to have that nurse again!!!! You can choose another!!!

My son is a grazer too.....somedays he'll sit down and eat a whoel meal others he has small meals through out the day! As long as she's growing I'd let it go!!!