There is a committee within our support group that is working on a mentor type of program for parents of children newly diagnosed with anaphylaxis. It is difficult to remember what would have been most helpful at this "fresh" stage. (I am not looking for any medical type questions as this is only for a support group setting.) What could/did another parent share with you that would be most helpful in this frightening stage? Would it be preferable to have one same contact person every week or to have a different person call each time? Is once a week a reasonable length of time?
On Mar 22, 1999
When I first found out my son was allergic, I was petrified that he was going to die. That was my biggest fear for the first month or two. What helped the most was to speak with adults who have this allergy .... and are still alive! That made me realize that if they managed to live and survive to adulthood, peanut allergy isn't a death sentence. Once I got out of that frame of mind, I moved into the "educate myself" mode. So, perhaps it might help having parents of newly diagnosed children speak to either adults, or parents of teenagers - those who have coped with the allergy and survived.
On Mar 22, 1999
Thanks Laura. This is a great idea and easily done as one of our many helpful members is a mom who has this allergy herself (along with her daughter). Perhaps she should be an initial contact for all new folks.
On Mar 23, 1999
I think this is a great idea. It was very helpful to me to be able to call FAAST (food allergy support group) in Cincinnati and talk to the mother of a peanut allergic son. Those first few weeks I needed somebody just to talk to a couple of times a week...someone to help me make sense of the information I was getting from different sources. They sent me a packet of information to get me started, which was also very helpful. It contained some general articles about the allergy and about testing, information about FAN, and an order form for medical bracelets. They also included a recommendation of 4 steps to take if Kelsey tested positive for the peanut allergy. What also would be nice to give a new person would be to compile a list to help with grocery shopping. I know this is like trying to hit a moving target. I think it would be ideal for there to be one person you could call to talk things over. It would help if the person had a child your child's age or older. What has really helped me (and really amazed me) is how non-judgemental and objective the FAAST people and everyone who has answered my peanutallergy.com posts has been. It makes me feel safe asking all kinds of questions and sharing all kinds of feelings.
On Mar 24, 1999
Coco: I think that being able to talk to an adult who has an older child with anaphylaxis puts your mind at ease... I have a 14 month old and I was able to speak with a mom who had a teenage son with anaphylaxis. One of my questions to her was: At what age did she start educating her son about peanuts, and HOW did she go about doing it?? I think that this might be a helpful topic for newly diagnosed members of your support group. By the way, where is your support group? Does anyone have any information about a support group in Reston, VA? (Wash DC area) Thanks. Hope this helps.. Astrid mom in Reston, VA
[This message has been edited by Astrid (edited March 24, 1999).]
On Mar 26, 1999
Thanks for your input. This is a very interesting question! Let' see what others have to say. I'll post it on the main discussion board as a new topic.