Michelle (jordansmommyinstlouis)

[mamato1]

How did the allergy testing go today? I've been thinking of you.

Chris

Mama to Brendan (aka Boomer) 01/04


http://b3.lilypie.com/FnI6m5/.png

[Hippoharbor]

Thank you for thinking of me and my son. When I got the news today, I cried (for most of the afternoon). I can't help to think of it as a "death sentence" for my son. I am sure I will come to grips with this soon just as you have with your son. I wrote the names of the websites down from your other post. Thanks.

I know that I will learn to read labels, cook more at home (minimal up to this point), and very carefully scrutinize what he eats at restaurants. I am just afraid of the seemingly unavoidable dangers, such as the peanuts that were on the floor of the luxury box at the baseball game that we were at Saturday. I think of what could have happened if he found the nuts before I did. I even went early to the game to make sure the employees did not have any nuts out for people to eat. These were nuts from the previous night that did not get vacuumed up, apparently.

Are you going to order your DS a medical alert bracelet. I think I definitely will for Jordan.

Thanks again and lets continue to pray that they develop immunotherapy for the dreaded peanut allergy soon. By the way, at least Jordan was not allergic to the other 15 items tested.

Michelle

[mamato1]

Well shoot, I was so hopeful that you could avoid this. I will tell you that it really has not been as bad as I had feared. We are super cautious when we eat out and I am becoming OK with being a b!tch to the teeny bops behind the counter who do not take me or my questions about peanut products seriously. I have safe snacks with me all of the time so I do not feel like DS is missing out when others are eating something that he can not have. Of course the epipen and benadryl are with us at all times. One other thing I have done that I forgot to mention in the previous post is to fill out the form I found at this link. http://www.foodallergyinitiative.com/uploaded_files/autho%20of%20treat.pdf

I have copies of it in my bag, with the child id sticker in his car seat, and with the emergency bag that goes with him whenever I will not be there. It gives me a huge amount of peace knowing that there are clear instructions for his care if I am unable to take care of him.

I am curious, did they just do a skin test or a blood test too? Please know that if if was just a skin test they have a high false positive rate and that you really should also have a blood test to establish a baseline for later reference. If his numbers drop enough in the future he may be elgible for a peanut challenge test and possibly outgrow this. I know that is what I am hoping for. Please email me at any time. My addy is in my profile and listed in the earlier post.

Peace to you mama, we can get through this.

Chris

Mama to Brendan (aka Boomer) 01/04


http://b3.lilypie.com/FnI6m5/.png

[megs4413]

So sorry for you! So far we're not peanut allergic...but we haven't had any peanuts yet! DD is allergic to sweet potatoes and carrots, though, so I'm dreading this allergy as well. I know you'll get through it. hang in there, mama!

[Hippoharbor]

I do not understand... how could the skin test be a false positive? I could see how a blood test could be a false positive, but I defintely saw the skin test reaction.
We did do a blood test. He explained to me that this was to test for cross-reaction to other nuts and also to quantify the amount of antibodies to peanuts are in his blood so that, over time, we can watch that number and if it reduces significantly, we could possibly do a peanut challenge.
In one of the brochures that we were given, it said that most people with PA CAN have peanut oil, but went on to say to avoid cold-pressed peanut oil and a couple other types. Can you explain this to me? I was so numb after receiving the news, I didn't ask any questions to the attending. I do not even have a followup for another year (will get the blood test results from the nurse in a few weeks).
I am anxious to start reading PA message boards to see how other families are safely living with this, expecially ordering out in restaurants.

Thanks again.
MIchelle

[Hippoharbor]

I do not understand... how could the skin test be a false positive? I could see how a blood test could be a false positive, but I defintely saw the skin test reaction.
We did do a blood test. He explained to me that this was to test for cross-reaction to other nuts and also to quantify the amount of antibodies to peanuts are in his blood so that, over time, we can watch that number and if it reduces significantly, we could possibly do a peanut challenge.
In one of the brochures that we were given, it said that most people with PA CAN have peanut oil, but went on to say to avoid cold-pressed peanut oil and a couple other types. Can you explain this to me? I was so numb after receiving the news, I didn't ask any questions to the attending. I do not even have a followup for another year (will get the blood test results from the nurse in a few weeks).
I am anxious to start reading PA message boards to see how other families are safely living with this, expecially ordering out in restaurants.

Thanks again.
MIchelle

[mamato1]

Michelle-

Well I guess that the skin test is a better able to rule out allergies than predict them. In other words, if a child does not react at all, you can be reasonably certain that the child is not allergic to that item. But, if they do react, it is possible that they are not allergic. Now why that is I can not say. I wish I understood that better as well.

As far as the blood results, what your Dr said matched my dr. In fact to give you hope, Brendan's numbers are already low enough to do the peanut challenge, but they still want to wait a year. Let me know when you get your results (I'm surprised it will take that long, I got mine in 2 days) and I will find the info for you on how to interpret those numbers.

The peanut oil is probably safe becasue it has been so refined that it no longer contains the peanut protein which is the thing that causes the reaction. Cold pressed oil is not refined therefore the protein remains.

I can't remeber if I posted about the horrible experience I had wiht the nurse who called with the blood results. Anyway, I have left the practice that did DS's initial testing and will be seeing a pediatric allergist on June 8th. Keep a list of questions and so will I and between the two of us we will have a comprehensive list that I can ask the new doctor.

Chris, who knows more about peanuts than she ever wanted to know!!

Mama to Brendan (aka Boomer) 01/04


http://b3.lilypie.com/FnI6m5/.png

[Hippoharbor]

I am so happy, and encouraged, to hear that his RAST levels were already pretty low. I pray for the same with Jordan.
Sorry to hear about the bad experience with the nurse.

How did you become suspicious of your DS's PA? If I remember correctly from your earlier post, was it hives around his mouth after eating asian food?

Michelle

[mamato1]

Yep, he ate some of DH's sesame and peanut noodles. The thing that really took us off guard is that he had had items containing peanuts before with no effect at all, so I guess that this allergy can kick in at any time.
Chris

Mama to Brendan (aka Boomer) 01/04


http://b3.lilypie.com/FnI6m5/.png

[mamato1]

Chris

Mama to Brendan (aka Boomer) 01/04


http://b3.lilypie.com/FnI6m5/.png