Deposits, but no return
We have apparently lost several more foods, including yogurt. That brings Baby E's total number of foods she can't tolerate to somewhere in the range of at least a dozen.
Today I made various phone calls between doing school with the girls, preparing meals and caring for a still-fussy Baby E.
I called allergist #1 to tell him about Baby E's most recent series of reactions and get his opinion. Of course he said he didn't think they were allergies.
So I guess it's official: Baby E has no food allergies.
Her consistent, reproducible, quick-onset GI symptoms, rashes, swelling, itching and general misery from specific foods are adverse reactions, not allergies. The tests say so.
Those first 8 positive skin-prick tests must have been false positives. Funny how she had "false positives" only to those foods which actually give her the not-allergic reactions.
I've called our GI specialist at the Children's Hospital at least four times over the past month or more, to ask three questions, and still haven't received a single return phone call.
The questions:
#############
1) Where did she send the orders for the stool test she ordered for Baby E, if indeed she sent them anywhere? Because none of the three labs we've used in the past has them.
2) Is it all right to switch Baby E to ranitidine (Zantac) instead of omeprazole (Prilosec) for her reflux, since she started getting rashes, itching, severe discomfort and diarrhea every time we gave her a dose of the omeprazole?
3) Could we please get the product code for the mask that was used for Baby E's endoscopy back in December, so the mask company can find out what was in/on it that might have caused Baby E's reaction to it.
The stool test isn't going to get done in time to get the results back before our appointment next week, we went ahead and switched Baby E's medication ourselves without the doctor's approval, and I'm not sure if we'll ever get the information about the mask, since we've been trying to get that since December with no success.
At least we already had a previous prescription from another doctor for the ranitidine--otherwise we would have had to choose whether to go for weeks with a reflux med that was causing increasingly severe reactions or no reflux med at all, which would also make Baby E miserable. Ugh.
I do really like the GI specialist, but we've consistently had a terrible time getting her to return phone calls. I've finally learned that we'll get an answer more quickly by making an appointment than by leaving a phone message. That could get real expensive real fast.
Today I made various phone calls between doing school with the girls, preparing meals and caring for a still-fussy Baby E.
I called allergist #1 to tell him about Baby E's most recent series of reactions and get his opinion. Of course he said he didn't think they were allergies.
So I guess it's official: Baby E has no food allergies.
Her consistent, reproducible, quick-onset GI symptoms, rashes, swelling, itching and general misery from specific foods are adverse reactions, not allergies. The tests say so.
Those first 8 positive skin-prick tests must have been false positives. Funny how she had "false positives" only to those foods which actually give her the not-allergic reactions.
I've called our GI specialist at the Children's Hospital at least four times over the past month or more, to ask three questions, and still haven't received a single return phone call.
The questions:
#############
1) Where did she send the orders for the stool test she ordered for Baby E, if indeed she sent them anywhere? Because none of the three labs we've used in the past has them.
2) Is it all right to switch Baby E to ranitidine (Zantac) instead of omeprazole (Prilosec) for her reflux, since she started getting rashes, itching, severe discomfort and diarrhea every time we gave her a dose of the omeprazole?
3) Could we please get the product code for the mask that was used for Baby E's endoscopy back in December, so the mask company can find out what was in/on it that might have caused Baby E's reaction to it.
The stool test isn't going to get done in time to get the results back before our appointment next week, we went ahead and switched Baby E's medication ourselves without the doctor's approval, and I'm not sure if we'll ever get the information about the mask, since we've been trying to get that since December with no success.
At least we already had a previous prescription from another doctor for the ranitidine--otherwise we would have had to choose whether to go for weeks with a reflux med that was causing increasingly severe reactions or no reflux med at all, which would also make Baby E miserable. Ugh.
I do really like the GI specialist, but we've consistently had a terrible time getting her to return phone calls. I've finally learned that we'll get an answer more quickly by making an appointment than by leaving a phone message. That could get real expensive real fast.
Labels: allergies, frustrations, health issues
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Posted by purple_kangaroo at 10:41 PM[Permanent link]
8 Comments:
Purple, my opinion on the not returned phone calls is that it is the office staff and not necessarily the dr. I have had the problem in the past and she had no record of receiving the messages. It if very frustrating but I really like her, just not the staff as I have been frustrated by them in the past. When I have needed to get hold of her I have always taken it to the point of calling several times in a day also trying to ask if you can speak to the nurse directly and not office staff. I have been able to do this before. I know it seems pushy but I am sure you don't have a problem being pushy when it comes to your daughter either. Like I said I would love her even better if only the office ran differently.
We have been waiting to hear from our GI specialist since January and the letter our pediatrician wrote to him stated that a response was urgent! AHHHHH...
Anyways, my advice to you is phone the patient advocate at the Children's Hospital and voice your concerns in tha lack of communcation between you and the GI Doc. I have placed a call to our patient advocate at our local hospital - oddly enough he hasn't returned my 3 calls - ha! It never ends... It must be just all in our heads!
My thoughts are with you.
Erinne
Well that much be such a relief to hear that Baby E has no food allergies. Why, all your troubles are over now. *snort*
I am so sorry that you are having so much trouble with the doctors. As if caring for Baby E wasn't enough?
I hope that you get answers soon and that the happy times of a few weeks ago return.
Losing tolerance to more and more foods can be a sign of leaky gut syndrome. Maybe investigating this avenue will bring some answers. Good luck.
Blech. I hate that you are getting this runaround. But I think you have hit upon the exact right answer. If you want your questions answered, we almost always have to make an appointment. For a brief shining moment, our transplant team had an excellent support staff that reliably communicated concerns and questions and then relayed the answer back to us.
No more. And, from what I've heard, it's a rare thing to have such efficient support staff.
Here's hoping for you all, and baby E.
My Doctor has an email address, and usually responds well to email. Could you perhaps ask the office staff if your Doctor does as well?
HUGS to you and Baby E!!
My4kids, thanks for the info. I'm glad I'm not the only one who has had that problem.
Chaoticfamily, thanks for the suggestion. I didn't know there was such a thing as a patient advocate.
Swissmiss, of course. Now we can just . . . um . . . keep doing what we've been doing, and call it by a different name.
CCW, thanks . . . and hugs to you.
Newwg, several of the possibilities they've been looking at would cause gut permeability. It's certainly a possibility. Thanks.
Moreena, thanks. It would be nice if most medical establishments had better systems and adequate personnel in place, wouldn't it?
Kai, the way the system is set up at the hospital is actually based on e-mail. I call, a staff person takes a message and e-mails it to the GI specialist's office, and I never hear back. :)
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