I have hesitated to put an update on Cooper on here because, well... I didn't have one.
But I really appreciate those of you who have expressed well wishes and asked how he is doing. I was not trying to ignore you. We finally had yet ANOTHER appointment today and I found out as much as I'm gonna for now. Here's the deal:
This is what he looked like on Day 3 of his patch testing a few weeks ago. There's a lot of permanent marker and tape/sticky residue, but basically you can see some pinkish/reddish circles inside of each box on his back. He showed some delayed reaction to ALL of the major things they tested him for. Nothing humongus, but there it is nonetheless. **groan**
At our meeting today, we discussed this, and I was told that we should continue the diet just like we've been doing. (We actually re-tested him for corn really quickly, and he was cleared of that one.) But the other "big 5" of wheat, egg, milk, soy, and nuts are still to be avoided. Cooper's diahrrea started to improve there for a while, and has now gone right back to horrible... all while strictly obeying this diet and keeping up his medications. So at this point I'm throwing my hands in the air. Am I really supposed to keep up these horrible restrictions even though they don't seem to be helping AT ALL???
Any of you who've been through this, throw me a lifeline???
9 comments:
Oh man!!!! I was hoping you would have some answers! I'm sorry to hear that. Hang in there. . .
Are there support groups? There has to be - so at least you can relate with people that have to have these restrictions as well.
I'm sorry that you're not getting answers.
I don't know if this is a route you'd consider - but I'd either start getting second opinions or look into holistic doctors (or both). Someone out there has to have some ideas that WILL WORK. I'd say, don't give up. Keep looking for a doctor or team of doctors that can figure this out.
Best of luck.
That has got to be SO frustrating! I am so sorry...I totally wish I had some amazing piece of advice...
but i DON'T. :)
Hang in there...something has got to change soon, right??? :)
at least he can have his kannikinick crackers again! And you can get rid of the purple stuff and go back to chocolate and vanilla! yeah! something with flavor for the poor kid.
I'm so sorry for little Cooper and for your family. I hate the wondering and frustrations, and hope the end is near for that part of this trial!
So sorry to hear you haven't received any helpful answers! Wish I had a genius idea to help you out, but...your situation is so different than anything we've experience with allergies I've got nothing I can think of. I'd have to go with the suggestions already mentioned, a second opinion, a different type of doctor...I've got some names I'd suggest, but they might as well be in a foreign country for the amount of travel you'd have to put into see them (although one does have an office in Gilbert.)
Hang in there!!
My only advice is to get a second opinion.
Gee, I just read the comments and see I'm not the only one who brought this up. I really, really would do that. He should not still be having runny poop if the problem is allergies and you've eliminated all that. Unless the poor kid just needs some fiber. But still. Something's not right. You should be able to get definite answers. There's nothing wrong with looking elsewhere.
Good luck!
Not knowing has got to be so frustrating. My sister went through this same thing and after my nephew had an emergency blood transfusion, they chalked it up to some rare virus.
Good luck!
I have a hard time believing it's food allergies. If he is still having issues while avoiding those foods, it seems like that can't be the problem. And I totally agree about a second opinion. We have been to two different allergists with my kids' food allergies...the first one was horrible and the second was fantastic. So, maybe that's the first step....I'm sorry for how frustrating this is.
Also...I am no expert, but his "reactions" don't look too severe...nothing like what Katie's back looked like when she tested positive for milk, eggs, and peanuts. Again, I'm not an expert, but I think that some reaction is normal...I don't know. It just doesn't seem like food allergies is the issue. Should I mention again that I'm not an expert? Just a mom with an opinion. :)
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