Promoting food intolerance knowledge

[LaurieG]

Those of you who have seen my posts before probably won't be surprised by my latest tale involving DD's many doctors...

Yesterday she had an MRI under general anesthesia. In preparation for the procedure I spoke with several different nurses and doctors and informed each one of her milk and soy intolerances. Most were confused by what I meant by intolerance so I spent some trying to educate them - telling them about the symptoms she has and that it isn't a histamine response and that she reacts in this way to all derivatives of milk and soy. I was advised to bring in food for her to eat so that there would be no risk of an exposure, which I did.

Last night she was wired, couldn't fall asleep and then once she did finally she tossed and turned all night. I thought I was the stress of the day.

Today she's been an utter grouch, and she's having mucousy diarrhea.

I called the procedure center and asked the nurse to look up what meds she was given. The nurse checked her chart and told me the meds but assured me there was no milk or soy as it is clearly written in her chart that she is intolerant.

I looked up the meds and sure enough - the #1 inactive ingredient is 100% soybean oil. :

So I called back and very politely told the nurse about the soybean oil and explained that I don't think most medical professionals have a very good understanding of food intolerances (as opposed to allergies), and that while most children with a soy allergy may not react to soybean oil (is that even true???) or lactose in a medication for a milk allergy, children with intolerances generally do. I asked her (very nicely) to please pass this information along as I was generally calling in the interest of educating them.

Obviously, I'm much more angry about it than I portrayed. Since this seems to be a common issue (with docs, family, friends, etc) I'm trying to perfect my response. The ultimate goal is to get people to understand intolerances better. I don't expect, nor would I want, to have my dd's intolerances treated as seriously as a severe allergy. After all, her life was not put in jeopordy and I realize that. On the other hand this treating her intolerance as though it is nothing but made up in the mind of an overprotective, histrionic mother is really annoying.

So my question is what is the most effective way to get the point across? If I could re-do my interaction with the MRI people could I do it better (so that next time I do?)

[kjbrown92]

Personally I would ask to see the lists of ingredients of everything. When I went into the ER with DD2 for her horribly infected toe, I told them she had multiple intolerances. I told her she was vomiting the Motrin that I tried to give her to bring down her 104F fever. They said they had a suppository version. They actually carefully looked at the ingredients and then said it had soybean oil in it, and they didn't want to risk it when she was already that sick, not knowing if it would effect her going "that way" through her digestive system. They wrote down every single thing she had (IV, abx, etc.) and checked every ingredient. They were absolutely fantastic about it. I always ask to see the package insert at the pharmacy so that I can see active and inactive ingredients. If someone looks at me funny, I tell them that she reacts up to a week after having something and that she's sensitive to minute amounts, and if they want to deal with my screaming child for a week, then by all means, they could have her and the meds. They usually go about their business after that. I guess I've learned to trust only myself (and I've even made mistakes not knowing something was a corn product, because that's under so many different names). I ask a thousand questions when I'm buying something, or at a restaurant.

I would have called to report an "adverse event" to the drug company. That the doctors erringly gave it to her is beside the point. It's an adverse event. But that's because I used to be regulatory compliance manager and we had to deal with the FDA all the time.

[LaurieG]

Originally Posted by kjbrown92

Personally I would ask to see the lists of ingredients of everything. When I went into the ER with DD2 for her horribly infected toe, I told them she had multiple intolerances. I told her she was vomiting the Motrin that I tried to give her to bring down her 104F fever. They said they had a suppository version. They actually carefully looked at the ingredients and then said it had soybean oil in it, and they didn't want to risk it when she was already that sick, not knowing if it would effect her going "that way" through her digestive system. They wrote down every single thing she had (IV, abx, etc.) and checked every ingredient. They were absolutely fantastic about it. I always ask to see the package insert at the pharmacy so that I can see active and inactive ingredients. If someone looks at me funny, I tell them that she reacts up to a week after having something and that she's sensitive to minute amounts, and if they want to deal with my screaming child for a week, then by all means, they could have her and the meds. They usually go about their business after that. I guess I've learned to trust only myself (and I've even made mistakes not knowing something was a corn product, because that's under so many different names). I ask a thousand questions when I'm buying something, or at a restaurant.

I would have called to report an "adverse event" to the drug company. That the doctors erringly gave it to her is beside the point. It's an adverse event. But that's because I used to be regulatory compliance manager and we had to deal with the FDA all the time.

Kathy, you always seem to have such great docs. I wonder why mine suck so bad? I'm going to start asking for the ingredient list from now on.

Maybe I will report it to the drug company, and I'm considering filing a formal complaint with the hospital. I really don't want to get the anesthesiologist in trouble (although I wasn't really impressed with her anyway), but I want them to figure out how this happened.

[kjbrown92]

Originally Posted by LaurieG

Kathy, you always seem to have such great docs. I wonder why mine suck so bad? I'm going to start asking for the ingredient list from now on.

Maybe I will report it to the drug company, and I'm considering filing a formal complaint with the hospital. I really don't want to get the anesthesiologist in trouble (although I wasn't really impressed with her anyway), but I want them to figure out how this happened.

I had a doctor that said it was my own fault that I got a UTI because I dared to go on vacation with my husband, and I MUST have had sex, so I brought it on myself. [The same doctor said it was perfectly normal for DS to be vomiting bile at 2 weeks old and that I HAD to drink milk.] I don't see him anymore. So I've spent some time weeding out the bad ones! Bot the pediatric GI docs I had were pretty good. I also went to the ER w/ DD2 when she broke her arm (jumping off the kitchen counter at 18 months old) and the PA didn't see the break on the xray and grabbed the apple away from DD2 (we'd been there for 5 months and it was the only food I had with me) and told her he wouldn't give it back unless she reached for it with her broken arm. I was extremely ticked off at him. Went to the orthopedist the next day, and he read the exact same xray and saw the break. So I've had my share of bad doctors. Luckily I had good instincts and didn't trust them!

[LaurieG]

Originally Posted by kjbrown92

I also went to the ER w/ DD2 when she broke her arm (jumping off the kitchen counter at 18 months old) and the PA didn't see the break on the xray and grabbed the apple away from DD2 (we'd been there for 5 months and it was the only food I had with me) and told her he wouldn't give it back unless she reached for it with her broken arm. I was extremely ticked off at him.

::

My problem is I try too hard to avoid conflict. I always talk myself into not being as vocal as I want to be, trying to convince myself that the docs know what they are doing and I need to trust them once in awhile.

Ugh.

Anyhow, I went ahead and filed an official complaint with the hospital. I don't know what I'm hoping to accomplish. But it just seems like *every. one.* of the docs at this hospital (which is actually an extremely well respected, top of the line hospital) are totally clueless when it comes to food intolerances. They either have no idea what I"m talking about or they are familiar with the concept but believe it is really all in the parent's head. The GI and the allergist want to call it a "protein intolerance" which isn't correct since she reacts to far more than the protein, so I always struggle to find the words to correctly explain it. I know the docs have access to dd's allergy tests and GI reports so I don't want to use the wrong words and possibly give more credence to the "she's an overprotective mother" theory. The only doc we've seen who has appeared not to doubt me at all is the ENT. And unfortunately she left the hospital.

How do you educate people who think they know everything?

[Wugmama]

It sounds to me that even if you would have told them your dd is ALLERGIC to soy, she still would have gotten the med.

I'd be furious if I were you. I'm so proud of you for filing an official complaint!

I usually don't try to explain intolerances to people. I simply say my dd is allergic to ABC. And D. And E. And ... (sometimes I just have to laugh at my situation, not laughing at you).


Tracy

[tanyalynn]

I'd say good job on filing a complaint. Honestly, they messed up and they need to know, and it should follow the standard process for doing that. I think to be a doctor you need to develop a fairly thick skin, and so getting a complaint on this isn't going to make a huge impression, but hopefully it will make at least a bit of one.