Welcome Beth!

What you're describing is a perfectly normal stage of grieving, and I think I can honestly say that each and every one of us has felt the same way - right down to feeling like our kids couldn't catch a break.

My DS is now 22, and away at Law School. He grew up going to school, summer camp, playing sports, attending parties and college. It is all doable, and he takes it all in stride.

This group has been the best source of information I've ever found, and a wonderful source of support.

Read on.  Hope you get as much out of this site as I have!

A long, long time ago with this group of wonderful parents here but at a place far, far away . . .

somebody shared the following.

It's as applicable to autism-spectrum as it is to life-threatening food allergy children.

http://www.our-kids.org/archives/Holland.html

It's going to be OK.  Better than OK.   

You'll see   

I just want to share a quick story that might lighten your mood.  My DD is pn/tn shellfish currently.  And was milk and egg until 8ish.  She also has asthma that is normally well controlled but can be very challenging during illnesses and winter months.  She routinely misses two to four days of school per year because her asthma is too bad to send her.  She's going to be 13 next month. 

About two years ago, her little sister got glasses and last year DD was told her teeth were perfect and that she'd likely never need braces while her little sister was told that braces were very likely in her future.

After that appointment, DD took me aside to tell me how bad she felt for her little sister with glasses and braces both - while she is so perfectly created that she needs nothing! 

It's all perspective.  Her challenges are her normal.

And, BTW - my younger girl is currently rocking pink and calico print oversized glasses that she LOVES.

My daughter was 11months old when she anaphylaxed to her first taste of peanut butter-- and she has lived for the past 16 years with not only that allergy (which clearly isn't going anywhere) but with several others, too. 

It's been a long road, and yes-- I felt stunned, really-- I went back and forth between horror (a diagnosis that comes in the emergency room isn't what I'd wish on anyone) and grief for all that we'd worked hard to be able to provide for our child (we planned when to have kids, etc.) and which her allergy placed in jeopardy. 


Best advice came from this group-- hands down.  The SINGLE best advice ever came from a series of members who basically told me-- one day at a time. 

Do not waste tears on what could happen in fifteen years.  Truly. 

I can recall being sad that DD would "never" have a normal college experience... that she'd never have a beautiful wedding cake, etc. 

I look back on that stuff now and think-- wow-- how funny that I was so worried about that stuff!!! 



When kids are so young at diagnosis, they-- honestly-- grow up never knowing another kind of "normal" and this IS their normal.  My DD plans food.  Always.  It's just how her life is.  She doesn't really pine for the spontaneity/freedoms that her friends have.  Well, maybe a little-- but the point is, she's a happy and healthy college student who happens to have life threatening food allergies and asthma. 



The first year is the hardest.  Transitions are hard (to school, moving, etc.).  But it really becomes second nature after a while. 

   Welcome to FAS. 

Yes, I felt anxious, and worried, especially about sending her off to school.  As McC said, it comes and goes in waves.  My PA/TNA daughter also used to have sesame and egg allergies.  This group has been key to our getting through all of those years.  I have found it has gotten much easier as she has gotten older.  We have been fortunate that she has not had any severe reactions, and really, no obvious reactions since early elementary ages.  So, with that, our confidence has grown that she is safe with our measures of avoiding any ingestion of her allergens. 

Read around on here and ask questions.  There is a manufacturer's section, to help us all keep current on safe foods and options.  There are amazing topics in schools, to help you navigate that. 

Ask any questions you may have. 

((Hugs)))

Just like you do.

It will get better. And sometimes it will get worse again. And then better.

My son was diagnosed when he was around 15 months old and is in his first semester of college. We had to fight for access to education before the new ADAAA. It has been hard.

But it has been doable, and this group really helped.

Welcome. Sorry you need to be here.

How did you feel when your kid was first diagnosed.  We've never had an anaphalactic reaction, butI understand that is a possibility.  Now carring epi-pens, etc. 

I go back and forth from being really sad (like, how is this going to affect her, will she feel bad if her friends are going to the ice cream parlor and she cant)  to really scared (what happens when she is in highschool.  Will she "just try" something that might have nuts.  Will she be careful.  To angry.  She had some other medical problems (bad eyesight that makes us go to a specialist 3 hours away every other month, she's had surgery to remove a benign mass in her stomach, eczema thats pretty bad and requires prescription medicine, etc...)   I am so mad that she cant seem to catch a break!  She's had more than her fair share of medical problems, and now she has to be careful about what she eats!

How did you feel when your kid was diagnosed.