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Topic summary

Posted by LinksEtc
 - August 14, 2014, 05:10:46 PM
I hope that you can find a great allergist who can help her work through this.


:grouphug: to you & your dd.
Posted by Jessica
 - August 14, 2014, 02:41:58 PM
She has an appointment with a regular gp. The last time she saw an allergist was when we had the component testing done 2 yrs ago but it wasn't her regular allergist. She hasn't seen her regular allergist in a few years. I'll call one or the other and see if we need to see one of them.

eta: just realized her original dr is a pediatric allergist. The one where we took the component testing is 2 hours away (we only went there because he was the only one that would do the test). I guess it's time to look for a new allergist.
Posted by PurpleCat
 - August 14, 2014, 02:30:51 PM
DD has had hives linger and become out of control eczema.  Asthma has also lingered.  No she has not had to restart prednisone but she did continue with her rescue inhaler and benedryl I think for about another week and we've had to get something like Elidel for her extreme eczema.   

Does your DD have a follow up appointment with her allergist?  We have always done that typically at the end of the prednisone.
Posted by Jessica
 - August 14, 2014, 02:04:28 PM
Thanks. I think a big part of the problem is that the hives keep returning so she thinks something specific, like peanut dust, is causing it. From what I understand it's normal for hives to take a while to fully resolve and I've been explaining that to her. She took her last prednisone today and still has hives this afternoon. I hope the benadryl can keep them down from here on out. Has anyone had to restart prednisone after stopping?
Posted by spacecanada
 - August 14, 2014, 10:28:16 AM
If the anxiety doesn't go away soon, or becomes worse, you may want to seek the help of a psychologist. 

I'm currently seeing one for PTSD treatment due to an episode of anaphylaxis last year.  The anxiety and nightmares wouldn't stop.  My psychologist said that anxiety tied to a specific event or trigger (like food) is much easier to treat than generalised anxiety or depression because the cause is easily identified.  There are well-defined and highly successful treatment programs for these types of anxiety and PTSD.  Help exists if you need to go that route.   :grouphug:
Posted by PurpleCat
 - August 14, 2014, 07:20:26 AM
Each time for my DD it was different.  It was painful to watch. 

I think it is worse as they get older because they understand so much more that this is life and death, they know they have to manage this on their own in the not to distant future, they know Mom can say good things but she can't make this go away or truly make it better.

Last time DD was 13.  I just kept open dialog going as she seemed to need it.  I acknowledged her fears as well as mine. I'd mention in passing she seemed stressed or worried about eating but in a way that she could chose to talk or ignore my comments.  Finally, after a few weeks, she asked me if she could text me when she no longer lives at home for guidance.  Anytime, anyplace, I'll always answer and help.  That conversation seemed to help her a lot.

Recently my Mom made some mistakes.  Not intentional but she is getting old and forgets all the details to our long list of allergens.  Now she does not trust my Mom who has cooked for her since she was a baby.  We ask about everything.  My Mom has thrown away her wood cutting boards, wood spoons, and other possible kitchen tools that might create cross contamination.  Now the two of them are anxious.

We also just went on a trip for over a week that involved eating in restaurants we were not 100% comfortable with.  DD lead the conversations with the waitstaff.  DD made herself sick a few times and after talking, acknowledged that she made herself feel that way because she was scared.  (The waitstaff were not as versed in allergies as they are around here.  Managers often stepped in.  At one location I actually butted in because I could see DD was struggling with this conversation and did not believe the waiter got it - I said, Look, this is life and death, please ask the chef to come speak with us.  The chef and manager came and DD "had the best meal all week".)  We came home and DD's first comment was, finally a home cooked meal I can just eat!  She had seconds!


There is always an underlying sense of anxiety, every meal, every snack, thought out, scrutinized, etc ....

Add an anaphylactic reaction and the anxiety meter runs high.


I hope your DD can relax and feel safe soon.  And if she doesn't, maybe she needs someone to talk to.  I've offered that to DD in the past too.
Posted by Jessica
 - August 14, 2014, 03:43:16 AM
Since she had her reaction dd is very paranoid. She was already pretty nervous about FA which had gotten worse as she got older (and I'm guessing, as she read more online). I understand why she's anxious. I'm anxious too. She said earlier that she thought her lips were tingling but then realized they were not. This has happened several times now. At times she thinks she's wheezing but a few minutes later she doesn't feel like it anymore (she does not have asthma as far as we know but she did when she was younger and is always worried about it coming back). Then she said she keeps thinking all of her things have peanut dust on them (from vacation) and wants to wash/wipe everything. We've been on vacation many times to these same houses and she never had the first problem, which to me is a comfort. It's not really comforting her though. She has never seemed to be contact reactive and has even picked up a peanut shell with no reaction before. She's only had hives from airborne contact (and only a hive or two each time until this last episode) and has only had them a few times since her diagnosis (at age 1).

How long does this usually go on? I know it's different for everyone but how long did you/your child experience the heightened anxiety? How can I help her through this? It's breaking my heart to see her so worried. :(