Would like comments on what we heard from our new allergist...

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My 17 month old son went to his new allergist last Wednesday, and I'd like some feedback from all of you on what we were told.

First of all, I really like the new doctor -- he was very thorough -- spent about 1 hour for consultation, then about 45 minutes after the testing to answer questions. He quoted papers and research done by Dr. Sampson at Mt. Sinai, and is very current on all the information out there.

Jacob's RAST score for peanuts was .83, which is very low. He tested negative for all tree nuts (except a possible false positive to pistachios), eggs, milk, soy, and wheat on the skin test.

So, here's the advice from the doctor -- Stay away from everything that for sure contains peanuts or peanut butter. Don't worry about peanut oil. Stay away from all tree nuts until at least age 3 when we will retest to make sure he hasn't developed an allergy to those. Give benadryl for mild reactions if they occur and epinephrine if there is wheezing, swollen tongue, lethargy, vomiting, or trouble breathing. As far as may contains and cross contamination goes -- he felt very strongly that because of Jacob's low RAST score that even if a may contain did contain, it would not be above the threshold to cause a reaction for him -- because the amount contained would be so small. We still plan to avoid all of those foods in order to possibly help him grow out of the allergy, but now maybe it doesn't have to be such a worry for us.

What do you guys think about his advice? Anyone else heard similar things on may contains and cross contam that have had very low RAST scores?

thanks for the help!

On Nov 29, 2005

I can't really comment on the medical advice... but as far as the "may contains" since your ds is so young he won't miss them. I would avoid them until later just so that he does not have to "give up" something later.

I am an old timer and I know that dd did not like giving up some of her fave "may contains" like Kit Kats.

On Nov 29, 2005

I dont know what my sons RAST score was but he was level 2. He was tested at 15 months I think. We avoid may contains for the most part. He is going to be 3 next month and since he never had those items I dont feel he misses them. I just bring him a snack when we go places. I think I would probably avoid them just to be on the safe side.

------------------ Lalow James 3yrs, NKA Ben 2 yrs, PA and MA and SA

On Nov 30, 2005

Reraising to get some more opinions on this.

On Nov 30, 2005

When deciding this for myself, I came to the conclusion that it wasn't worth the risk, just so he could have a certain candy bar, etc.

I don't want to have to live with myself if anything happened. I think if you are having enough doubt that you are asking our opinion, then you have your answer. Trust your instincts. My instincts said it is not worth the risk.

On Nov 30, 2005

I would not put your son's life in jeopardy just for some extra types of candy, cookies, and sweets.

My son, also Jacob, (now 9) tested very low on the CAP RAST. In fact, the score was so low it was considered negative. However, he failed the food challenge with less than a tiny amount of pb that he spit out w/ a full reaction! He also reacted to a pudding cup whose company makes a brand w/ pb but it wasn't labeled (which I considered 'made in the same facility' or 'may contain'). He did test positive to cashews (previously skin tested negative) and pistachios with the same CAP RAST.

Very simply put...I don't trust tests anymore. Our old allergist made us really believe that with my son's scores he was NOT allergic and would not react.

On Nov 30, 2005

Regardless of scores,

If a child is allergic to peanuts, he should avoid ALL nuts, peanuts, AND peanut oil.

Cross contamination? FInd your comfy zone... We eat SOME 'may contains' (not a lot). Only ones we're comfy with.

Jason

------------------ [b]* Obsessed * [/b]

On Nov 30, 2005

On the peanut oil issue -- both allergists we have seen said that peanut oil should not pose a problem for anyone with PA b/c it is cooked at such high temperatures that the allergen does not remain. They did say that if something containing nuts was cooked in the oil, it could contaminate the oil, but that would be true of any type of oil -- not just peanut. I've also read a lot about peanut oil not being a problem. Anyone here actually had a reaction to peanut oil that was not cross contamination from something cooked in the oil?

On Nov 30, 2005

You have a choice...

1) You can avoid peanut oil, and have NO fears.

2) You can go to Chick Fil A in the mall (or whereever they are) and buy a hamburger there, feed it to child, and PRAY there is no reaction.

kwim?

Every child is different. Some react. Some do not.

Jason

------------------ [b]* Obsessed * [/b]

On Nov 30, 2005

Quote:

Originally posted by nomorenutz: [b] Jacob's RAST score for peanuts was .83, which is very low. [/b]

Compared to some of the RAST scores I've seen posted here, .83 is quite low, however, don't forget that it's still officially a category III, "moderate" allergy.

As far as "may contains", "made in a facility" and peanut oil goes, I agree with the others who have suggested you keep your son away from those things, for several reasons.

First, as someone else pointed out, it'll be a lot easier on him and on you if he never gets used to having such things, because he won't miss what he's never had.

Second, because your son's score is relatively low and because he's so young, he has a much better chance than most kids of being in that 20% who actually outgrow the allergy. The best way to improve his odds of being in that 20% is to be wildly conservative in feeding him. Do the absolute best you can to keep his exposure to peanuts, even in trace amounts, down to absolutely zero. It's not that hard to do while he's little and his food is something you can control. And wouldn't it be wonderful if through your hard work and diligence, he outgrew his allergy by the time he was ready for elementary school, and you could send him off to school without worrying that you'll get "the call" from the school nurse that your son was taken away in an ambulance? And wouldn't it be wonderful to send him off to school knowing that he can do what the other kids do, eat what they eat, feel like he fits in? I'd give anything to be able to give that to my son. (His initial RAST score was .72, by the way, so quite similar to your son's.)

Third, and last, I think: Remember that every exposure to peanuts -- even one to trace amounts -- is revving up him immune system, creating a general tendency toward worsening reactions. So if his only reaction to peanut exposure right now is hives, don't you want to prevent his next accidental exposure from progressing to wheezing, or whatever?

Remember, you can always change your mind in a few years and choose to loosen his dietary restrictions and allow more peanut exposure. But you can't go back in time and undo any damage done by allowing the exposures now, especially when he can't fully verbalize everything he's feeling, and so can't completely tell you about any subtle symptoms he's experiencing.

Best wishes, Debbie

On Nov 30, 2005

I am in total agreement with all of you that we will not be taking any chances on any of these things with my son. My real question was, do you think that my allergist is giving sound advice or not? We are keeping him away from everything based on the fact that it could help him outgrow the allergy -- I just feel better knowing if an accidental exposure did occur, it probably wouldn't harm him -- according to his doctor. Just wondering from all of you if I can believe that or not -- does that make any sense? it's like -- I'm definitely not going to deliberately give him any peanut products, may contains, etc, but maybe I don't have to worry quite so much about an accidental exposure for no reason. A person could drive themselves crazy with worry. Debbie, has your son's score gone up from .71? By the way, my doctor classified Jacob's RAST score as Class 2.

On Nov 30, 2005

Quote:

Originally posted by nomorenutz: [b] I just feel better knowing if an accidental exposure did occur, it probably wouldn't harm him -- according to his doctor. [/b]

I think this is something you'll never know. If he has an accidental exposure, a small one, and he doesn't have a noticable reaction, you wouldn't know whether or not it even occured. It sounds like what you're really wondering about is if having low test scores means only small or non-noticable reactions. I think the official answer is "no". Some people with low RAST results still have serious reactions. That being said, my son, who is 10 now and had initial RAST results similar to your son's, has never had a reaction to an accidental peanut exposure since his initial diagnosis. What does this mean? I don't know. Maybe he's never had an accidental exposure. Maybe he's had an accidental exposure every single day he plays on the playground and touches the same playground equipment that all the PB-eaters touch. The only way I could find out would be to deliberately expose him, which obviously isn't something we're ready to do. :-)

[b]

Quote:

A person could drive themselves crazy with worry. [/b]

Yes, we all do! At first, at least. But then, eventually, your life does return to normal, or at least something kind of like normal. And you can sleep again.

[b]

Quote:

Debbie, has your son's score gone up from .71? By the way, my doctor classified Jacob's RAST score as Class 2.[/b]

After 3 years, it went from .72 to 1.something (I don't remember exactly, probably about 1.3)

The scale that was used when my son was tested classified <.35 as non-allergic, something through .71 as Class II, .72 through 7(ish) as class III. So my son was initially barely a class III. I think there is some variation in score classification due to different varieties of RAST tests that are available.

--Debbie

On Nov 30, 2005

I'd like to address the tree nut part of the advice you were given by relating our recent experience.

DS is known to be PA, but has never been tested for TNA. We've always avoided TN for 3 reasons: 1)there is always a chance of cross-contamination with peanuts in the plant, 2)there is a very good chance (50%, I believe?) of developing TNA if he isn't already, and 3)it's very difficult to tell for sure if an item has TN or PN in it because PN can be reflavored and reshaped to resemble TN. But because we're working on a 504 plan, we thought it might be to our benefit to know for sure if DS is TNA. Our allergist said there wasn't any point in testing him because he should always avoid them anyway, and for all the reasons listed above. The clincher was this: our allergist told us that he has a colleague who is PA but not TNA, and who chooses to eat TN. He is very careful, and avoids cross-contamination situations whenever possible, and yet he still has occasion to use his EpiPen about 3 times a year. He is an informed adult, and makes these choices knowing what the risks are. A child is unable to do so for himself, and must rely on the adults around him to keep him safe until he is mature enough and has developed the necessary skills to make these decisions on his own.

I'm not saying that your doctor did not give you good advice. It is not advice that would make me comfortable given what I already know about this allergy. You have to make the choices for your family, for your child. I hope that the feedback you get from the folks here helps you to make choices that you are comfortable with. Best of luck!

On Nov 30, 2005

two points: 1- my daughter's RAST and SPT scores were both very low to one treenut (about 0.4 for the RAST) and she still reacted anaphylactically to it (all allergic symptoms w/exception of the falling blood pressure). So a low score doesn't guarantee you anything (you probably already know that)

2- if you totally avoid nuts and then recheck him in a few years, and he's still negative, that really won't tell you anything at that point. Rather, I would suggest, that if you really want to find out, then if he does test negative, give him a very small amount and *then* retest him. If you truly avoided nuts, then he should still test negative bcs he will always test negative until he's sensitized to it. Which can't happen until he's exposed. I'd definitely read up more on it before then, which I'm sure you will.

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