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Tyler's Doctor Is Frutstrating Me...

Shalia

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Shalia Apprentice
Shalia
Posted

Well, got Tyler's doctor to listen to complaints, and he even is willing to consider not doing bloodwork and biopsies and go based on dietary response. (Woot!) However...

He wants me to put Tyler BACK on gluten not once, but TWICE as a gluten challenge, to make sure it doesn't coincide with a stomach bug, to "prove" that it's Celiac. Even with a positive Enterolab test. *AACK!* How could he think I want to make my kiddo sick ON PURPOSE TWICE just to prove a point to him?

I don't get doctors. Really, I don't. It's not enough that *I* have a diagnosis. No, I have to torment my kid TWICE. Grr.

But, on the bright side, no biopsy, he told me to stop if Tyler gets sick (duh!) and I got the notes from him saying gluten free diet for the daycare and the school so they'll be forced to comply. So I got what I need. :)

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AndreaB Contributor
AndreaB
Posted

I agree GGRRR.

When does he expect you to do this. I assume if he doesn't what to assume it's a bug that you'll have to wait until after flu/cold season.

Does he expect you to have him be sick for x number of days?

I don't really expect answers.....just rhetorhical questions.

Shalia Apprentice
Shalia
Posted
  • Author
I agree GGRRR.

When does he expect you to do this. I assume if he doesn't what to assume it's a bug that you'll have to wait until after flu/cold season.

Does he expect you to have him be sick for x number of days?

I don't really expect answers.....just rhetorhical questions.

No, he wants me to do it once now, and once in the summer when cold and flu season is over. *sigh* And I don't know what he expects in relation to school. Tyler gets so sick he's out of school for a couple of days vomiting. I can't do that to the poor kid. :(

AndreaB Contributor
AndreaB
Posted

I wouldn't want to either. It's not as if gluten free is an unhealthy diet.

Did I read correctly that he gave you notes? Do you really have to go through with the challenge then?

Ursa Major Collaborator
Ursa Major
Posted

I'd just let him know that you KNOW gluten makes Tyler awfully sick, you HAVE done the challenge already, and have no intention of making him sick on purpose now. Period.

Nantzie Collaborator
Nantzie
Posted

As a mom, I would consider an accidental glutening a challenge and just call it a "challenge" when you talk to the doctor.

"We did the challenge last week, Doctor" would really mean one of the kids at school touched his lunch on pizza day and he was home for the rest of the week.

My daughter was saved from a glutening just last week because another child (new) touch her food while they were all eating pretzels for snack. Jenny wasn't at the table yet so didn't see it. The rest of the class saw it happen and told the teacher. (This is preschool, btw. Gotta love those kids for looking out for her. They're very protective. :wub: )

This isn't exactly adhering to the letter of the doctor's order, but that's probably what I would end up doing.

Nancy

Nic Collaborator
Nic
Posted

I agree with Nantzie. With kids there is bound to be an accidental glutening at some point. That can be your challenge. If my son gets gluten his symtoms return for at least a week. So there is the proof he cannot eat it.

Nicole

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skipper30 Enthusiast
skipper30
Posted

Ask the doc if he wants to schedule a time to come over and help take care of your child while he is dealing with the effects of being "challenged". :blink:

I love how people who go to school and spend THOUSANDS of dollars to get all of this knowledge can be so ignorant and thoughtless sometimes!

I agree with the others, you know what makes him sick...I'd let it go at that! We had an accidental not long after our dx and I was in a bit of possible denile...well that made things CRYSTAL clear for us!

Good luck...glad you got your notes for school!!

e&j0304 Enthusiast
e&j0304
Posted
No, he wants me to do it once now, and once in the summer when cold and flu season is over. *sigh* And I don't know what he expects in relation to school. Tyler gets so sick he's out of school for a couple of days vomiting. I can't do that to the poor kid. :(

I would love to know how all of can distinguish a gluten reaction from the flu or a cold. My son got into regular pretzels yesterday. He has been fine all day long- playing and happy. About 3 hours after eating the pretzels he suddenly came down with a high fever (104.4) and was vomitting and having tons of gas and loose stools. Now, was it the pretzels or was he already going to get sick with the flu? I hate not knowing. My son was never diagnosed with celiac. He is on the diet because it cleared up his "toddler diarrhea". He had all the tests done and they were negative. It is pretty simple to have him on the diet because my 3-year-old is on it.

So I guess we'll never know. It makes me lean toward flu since he is still having a high fever without tylenol and motrin. He was up almost all night last night vomitting.

Thanks for any insight into this and sorry I'm asking so many questions on your thread!

Shannon

Shalia Apprentice
Shalia
Posted
  • Author
I wouldn't want to either. It's not as if gluten free is an unhealthy diet.

Did I read correctly that he gave you notes? Do you really have to go through with the challenge then?

Yes, I already got the notes from him.

I'm terrible. What I'm figuring is there will EVENTUALLY be slip ups. Someone, somewhere, will give him what he's not supposed to eat. I'll call THOSE challenges, and leave his intestines alone when I have control.

I feel guilty ignoring the doctor, though, when he's all willing to go on dietary response with me.

As a mom, I would consider an accidental glutening a challenge and just call it a "challenge" when you talk to the doctor.

"We did the challenge last week, Doctor" would really mean one of the kids at school touched his lunch on pizza day and he was home for the rest of the week.

My daughter was saved from a glutening just last week because another child (new) touch her food while they were all eating pretzels for snack. Jenny wasn't at the table yet so didn't see it. The rest of the class saw it happen and told the teacher. (This is preschool, btw. Gotta love those kids for looking out for her. They're very protective. :wub: )

This isn't exactly adhering to the letter of the doctor's order, but that's probably what I would end up doing.

Nancy

Yeah, I think this is what I'm going to do. I can't in good conscience make him sick on purpose. What kind of mom KNOWS teh answer to her kid's problem and then screws with him anyways? That's just cruel. :(

So I'll let accidental glutenings be the challenges. That'll be proof enough for me.

Shalia

Ask the doc if he wants to schedule a time to come over and help take care of your child while he is dealing with the effects of being "challenged". :blink:

I love how people who go to school and spend THOUSANDS of dollars to get all of this knowledge can be so ignorant and thoughtless sometimes!

I agree with the others, you know what makes him sick...I'd let it go at that! We had an accidental not long after our dx and I was in a bit of possible denile...well that made things CRYSTAL clear for us!

Good luck...glad you got your notes for school!!

I should. *grin* I should ask him if he wants to take care of an embarassed, sick, upset 8 year old who's mad cause he knows he's not supposed to poop in his pants, but can't help himself cause his gas and D is so bad.

That might clear up the 'challenge' question. :D

vampella Contributor
vampella
Posted

When my doctor said the GI would want to have Emmah back on gluten for a biopsy..I said...NO WAY IN HECK!!

I told him, there was no way I would ABUSE my child, and to me making her sick by feeding her a food that is making her so ill is child abuse.

It's ok to abuse my child IF the DOCTOR say's it's OK..Ummmm..NO!!

I will tell the GI the same thing. no way in heck.

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