As you work through the events, perhaps consider working to improve the food labeling laws?

Start with your own company -- insisting on REAL knowledge and understanding of cross-contamination AND information supplying to customers.

Before you suggest changes, have the CHANGES you wish to see (the "best practices" solutions) already in hand for them.  In writing.  Kept simple.

Sometimes you have to "help" people/companies/manufacturers "get it".

Know what I mean? 

{hugs}   






Forgive yourself.  THAT needs to happen first.   

I always have some post traumatic stress after my ds has a reaction.  The worst is when there are circumstances that make you realize it could've been much worse with just one minor change in what happened.  Those are the hardest for me to get over.  It does get better, but if you feel like it isn't there is no shame in talking to someone.   I'm sorry your son had a reaction, especially when you did the right thing and called. 

My 6 yr old had an anaphylactic reaction last week after having a few sips of a protein shake that I was told was made in a nut free facility.  Turns out that I was given the wrong info by a "product specialist". I am usually pretty calm and "laid back".  I am a total wreck.  I am crying just thinking about it.  Do I need counseling?  I am scared to death and overwhelmed w/ the responsibility to keep her safe.  I am with Shaklee, the company that gave us the wrong info.  Anyone know where I can get statistics on cross contamination?

So glad you checked in with us tonight!  I've been wondering about you.  I hope things continue to improve for you.  It's good you are seeing the dietition weekly.  Hang in there!  Please continue to let us know how you are doing.    

Thank you CM. Not much better, but trying hard. I will be checking in with my dietitian weekly now, for a while, and she is sending me to a compounding pharmacy for a more tailored supplement. My GP is doing more thorough testing for deficiencies; there are more health concerns coming up due to not eating, which only fuels my anxiety and a sense of urgency. And we are taking a more structured and more of a team approach with therapy. It's just a very steep hill to climb, you know?

How are you doing? I keep thinking about you and wondering how things are going now that you're past that anniversary week.   

   Facing this takes a tremendous amoung of strength, Ciel.  I know that you can do it.   

 

Hoping that you're on the path to being more comfortable soon.

I brought this up the other day with the therapist I have been seeing and we are going to work on a plan. I knew she specializes in general anxiety, but found out she also has experience working with eating disorders. In the past I've felt like she discounted my reaction last year as a panic attack, which I am even still open to considering even though I don't believe that it was, but felt somewhat slighted by her confidence that it was likely something else. This was the first time I felt somewhat validated and felt like she truly believed that it was anaphylaxis/severe asthma, etc. We came to the agreement that it doesn't matter at this point to pin down the precise underlying mechanisms because at the end of the day I am not eating and that is by far the most critical factor right this very minute. At the same time, she thinks the treatment structure for traditional EDs can be effective in the meantime with the baby steps to just get some food into my body while we look at the anxiety concurrently. I will probably go back to the dietitian eventually to have her balance the menu properly, but first I need to just get through the first part. It sounds so simple, yet I have been struggling and failing miserably for the last year. We shall see, but for now I am working on scraping up enough courage to face this straight-on. I don't necessarily feel like getting slapped with more labels, but I guess it is what it is, labelled or not.

I apologize if my replies are somewhat scattered, but unfortunately that seems to be all I can manage these days. Thank you for all the feedback and support.

I think Ra3chel's advice is good.  ED therapy is really about delusional thinking, at its most fundamental level.

Anxiety re: LTFA which grows out of control is more like OCD or GAD.  It's not that the threat of infectious illness isn't real, you know, but those who have compulsive handwashing as part of OCD just can't separate "real" from "not real" or "beyond what is reasonable to worry about right now."

There is a level of anxiety which is beneficial.  This makes the situation quite different from most ED triggers.   

Ciel, I'd suggest looking more in the direction of therapists or psychiatrists who specialize in anxiety disorders and/or OCD than ED specialists.

Database / search availability and usefulness varies wildly and tends to be linked to specific insurance providers.

Are you in the US? I seem to remember Canada? I know here in the Us there are data bases for finding psychological help. I find word of mouth to be much more helpful, though.  I think it's more of having someone help you sort it out and come up with a plan, rather than getting a diagnosis.  After C's reaction I mentioned in an earlier post, I scheduled DH and for an appointment with a marriage counselor Id heard wonderful things about. I was terrified to feed C and was ion lock down mode. She validated my feelings, ran me through the what ifs, helped DH to get on the same page , but the biggest and most unexpected benefit was how she helped us think outside the box....

I am trying; I got up enough courage to start looking harder and once again end up overwhelmed, isolated and brick-walled as per usual. Too difficult. Standard eating disorder questionnaires don't really fit. I can take that as a good sign, or I can take it to mean that I simply cannot find relevant information about diagnosing anxiety linked eating disorders in food allergic adults. This is not traditional body-image issues. Does anyone know where I can find out more? I'm not sure what difference an "official" diagnosis will make or if it will help me figure out the next step but at least I can feel like I am at least trying to do something to help myself.

   I'm really glad that everything went off without a hitch.  I will hope for better days ahead for you, Ciel.