really disappointing RAST test results - higher numbers

[lnitti]

I am really disappointed.  Our allergist repeated the RAST for my daughter.  We had it done before in December 09, so about a year and a half difference.

I was really hoping the numbers would be going down since that is what our allergist says he looks for as a sign that a child may be outgrowing an allergy.  He said it isn't unusual for a young child to have numbers going up as the allergy is still developing.

ALL of the numbers have gone up.  now I don't have the numbers, but he said they were all higher.  Her peanut is now over 100.

On a good note, we tested mango this time and it was negative.  We assumed she was allergic because of the cashew.  And her sesame seed number is higher, so now that is on our list of foods to avoid.  It was 0.38 and now it is 0.61.

This coupled with her crazy seasonal allergies has me really disappointed and very concerned about her.  Her skin test is coming up in a couple of weeks to narrow down the environmental allergies.

Does any one have any thought or experience with RAST numbers increasing and what that may really mean?

[mbbinsc]

My 5 year old DD went up on her RAST test last fall.  I was so sad as others talk about losing food allergies where hers just got worse.  The only thing for us to do is to wait and retest at some point.  But she would need such a significant reduction to make a difference that we probably won't do the RAST again until she is 7.  She has been having more seasonal allergies so we will probably do more skin pricks this summer.  Not looking forward to that!

[scsigrl]

Yes, it IS typical that the numbers go up before going back down.  Remember that the numbers means nothing as to if and how bad a reaction will be though so keep hope!  There are only a few times the numbers really mean anything significant (PPV's are only know for a few food).  

How old is your DD?  Hang in there!

[lnitti]

Originally Posted by scsigrl 

Yes, it IS typical that the numbers go up before going back down.  Remember that the numbers means nothing as to if and how bad a reaction will be though so keep hope!  There are only a few times the numbers really mean anything significant (PPV's are only know for a few food).  

How old is your DD?  Hang in there!

She will be 4 in September.  She is keenly aware of her allergies even advocates for herself.  She will tell people what she is allergic to, will ask if I can read the "directions" (the ingredients).  And while she has been very good about it, the older she gets the more she knows she is different and the more she feels things are fair, etc.  I feel bad for her.  I am terrified any time there is a new experience, or a birthday party at someone's house.  I can't drop her off anywhere, I have to stay right with her as I can't expect someone else's parent to know what is safe or not and to know when or how to give benadryl or her epi-pen.  At school she has to have her own snacks.  She can't eat with the other kids.  She is so limited.

I was really hoping that the numbers would be going down as the allergist said that would be the indication of her outgrowing an allergy.  We only have a little over a year before she is 5.  I was really hoping that by 5 she would out grow something.  But to me that seems very unlikely.

In addition I am going through a divorce and they have substantial visitation time with their father who is living with his parents.  Who doesn't take the allergies seriously.  He does not always have her epi-pen and benadryl and him and probably doesn't even know her benadryl dosage or how to do the epi pen or when to use either one.  He takes her places where nuts are prominent and his parents keep nuts out in bowls for guests.  He feeds my other daughter peanut butter right next to my 3 year old.  He refuses to use a separate toaster for her stuff, and uses his parents toaster that is used for everyone for everything.  I am terrified for her safety, but everyone just blows me off.  I have actually been told by someone that he is learning (since I handled everything before), and there may be some mistakes along the way and after she has a couple of allergic reactions, maybe he will learn.  They don't understand that even 1 allergic reaction would mean that she could die.

So I guess I was just hoping with every bit of my soul that her allergies were improving.  I am sorry I have been so whiny here and I do know that there are plenty of you here that have it much worse than we do.

[scsigrl]

:(  It is stressful.  Know there are many here who are walking the same path.

My DS is 4.5 and in the same boat.  He has undergone 2 food challenges in the past few months which were tough but he passed!  We are thinking of setting up one more just to cut his list (soy is the one we are thinking of but don't plan on feeding him soy regularly.)  I know DS is starting to notice things for him are different and it SO hurts me.  The first time he had a story hour where they passed out cookies and I had to run in to be sure they didn't give him one and all the other kids were sitting there eating them, I cried.  (I didn't have a safe treat cause who knew St. Patricks day would be something to bring in cookies for???)  It is so hard :(

We haven't seen any significant change in his numbers either for the typical things.  While I am happy to cross of fish and shell fish I can't help but want milk and/or egg.  Maybe I am being greedy :(  

As for your soon to be ex... more hugs.  I am not sure you are a member but there is a great food allergy site for parents, some of whom have been where you are with that.  Maybe talking to them would be helpful?  It's at Kids with Food Allergies.  I can't even begin to feel how stressed you must be. I would be a wreck if I had to let my kids stay with someone so oblivious about the food allergies :( It would make me SO angry.  Again, maybe talking to some BTDT Moms, they may have ideas for you on what to ask for in the divorce to keep your DD safe.

Again, more :hug: