Establishing a Comfort Level

Posted on: Wed, 06/20/2007 - 3:56am
KateDe's picture
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Joined: 09/20/2006 - 09:00

I'm frustrated and confused. My 4 yr old son has a PA. There have been mixed results on his blood and skin test. He's had some minor reactions that possibly indicate that the allergy is worse than the bloodword indicated. Not having a clear cut definate answer regarding how bad his allergy frustrates me greatly.

At 18 months his rast was #5. I was told not to worry that much, have an epi handy and don't be too concerned with cross contaiminates. The next year he tested a #2 rast. However the doctor preformed a skin test because I told him about an airborn reaction (just hives) and the doctor said to keep him away from everything. I had a problem with how the doctor handled things and switched to a new one.

The new allergist told me yesterday that allergies in general are not a science but an "art" and that I have to create a normal life for him. He said that I shouldn't be overly concerned with items labeled "may contain peanuts" and that in his 30 years of practice he's only had 12 incidents of bad reactions to cross contamination. He explained the risk of damaging my child mentally by forcing him to live in a bubble outweighs a minor reaction such as hives from cross contamination. I explained that my son did get a huge welt on his face after he ate Christmas cookies this past year that were baked by my sister on trays that she baked peanut cookies on. The allergist shrugged that off, basically saying that I have to find our own comfort zone. If it were my allergy I wouldn't worry as much as I do. But since it's my preschooler's I worry greatly.

Sorry for the rambling. I guess this post is more of a vent than anything. I just wonder how all of you mothers establish comfort zones for you children. ANd I wish there was a doctor out there that would commit to concise black and white information regarding this crappy allergy.
I feel insane when I'm yelling at him at birthday parties not to eat plain M&Ms and wonder if I'm just driving myself and my little boy over the edge.

Posted on: Wed, 06/20/2007 - 4:27am
Greenlady's picture
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Joined: 06/30/2004 - 09:00

I think there is a legitimate debate possible over where to draw the line between being protective and letting kids enjoy life.
However, I strongly disagree with your allergist that paying attention to cross-contamination, given your son's reaction history, is "putting him in a bubble." How can your son have a "normal" life if he never knows if a "may contain" item has enough peanut protein to cause a serious reaction? He has already had a reaction to cross-contamination, and the literature suggests that the severity of reactions can vary widely from incident to incident. So chance are if he has a cross-contaminated items again, he'll react, and next time it could be more than hives.
For us, avoiding "may contains" and unlabeled items is "normal", and doesn't stop us from enjoying life. We pay more attention to what we eat than most people, but this is often more of a positive than a negative.
Also, since when is "only 12" a reassuring statistic? Given that patients who have a high level of sensitivity are probably fleeing this guy in droves, or at least ignoring his advice, I don't think that this doctor's experience would make me comfortable with "may contains" at all.
There are a number of real-life incidents where minute amounts of peanut protein were enough to cause anaphylaxis or worse. Dr. Robert Wood, a nationally-renowned allergist, tells a story where he experienced anaphylaxis and was hospitalized after eating a safe cookie that had been picked up with a spatula that had previously been used to pick up pb cookies. The person who made the cookies had reassured him that they were safe was a collegue, another allergist. Allergists are people too and they can be wrong.

Posted on: Wed, 06/20/2007 - 5:03am
KateDe's picture
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Joined: 09/20/2006 - 09:00

"literature suggests that the severity of reactions can vary widely from incident to incident. "
That is exactly what the allergist and I talked about which is why I'm even more confused by his attitude.

Posted on: Wed, 06/20/2007 - 5:10am
niche's picture
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Joined: 02/05/2007 - 09:00

Hi,
Do you see a food allergy specialist or just an allergist. Where we live we don't have a food allergy specialist. We basically go to our allergist just for the epi prescription. As far as how we live I go by what I read in books by true food allergy specialists and what I learn on this site and online. When the time comes I may take my kids out of state to be seen by a food allergy specialist.
You stated he was a 5 and then a 2 on the rast was that the actual score or the Class #? Also, as many on this site have said before you can have a severe reaction no matter what your score - assuming it is positive. If he thinks you are low enough score wise to do a trial then that would be a different story. Personally I would want that done in a medical setting not by may contains...
And as for living a normal life well what advice do you think he would give someone with a higher score? To not live a normal life? I think we live a normal life just because we bring our own cupcakes to parties... doesn't make sense to me.
I read a study where they looked at may contains and processed on products and I believe it was 17-18% of the products did contain detectable peanut protien.
My son also has had a reaction to a cross contaminated bakery item. Not a doughnut or cookie either just plain french bread.
There are these great candies @ Vermont nut free chocolate that are very much like M&M's.
In my opinion I would look for a new allergist - the fact that yours considers 12 an acceptable risk for your child would worry me as would the fact that he is referencing just his own practice no studies etc. Things have changed greatly in the last 5 years for food allergy for him to reference the last 30 would also concern me. Just my opinion.
Good luck,
Nichele
DS 5 TNA PNA
DD 1 ?????

Posted on: Wed, 06/20/2007 - 5:13am
Sarahb's picture
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Joined: 01/22/2007 - 09:00

I think if one of the 12 were his own child he would be giving out different advice.

Posted on: Wed, 06/20/2007 - 5:42am
Jen224's picture
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Joined: 05/22/2006 - 09:00

I struggled too with finding a comfort zone b/c of all the conflicting information.
After a couple months of reading and researching (this board included!), it just made sense for *me* to have a strict one.
It appears that the jury is out on whether absolute zero contact helps a person out-grow and whether super small amounts of it build up in their system and can later cause ana during subsequent ingestions...and the list goes on.
So, until I see concrete evidence that "may contains" causes absolutley no problems or until my 3 year old is old enough to decide for himself (ah-hem, a good 10+ years from now!), *I* will only feel comfortable with a very strict comfort zone.
JMO--HTH,
Jen

Posted on: Wed, 06/20/2007 - 6:21am
GinaC's picture
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Joined: 11/11/2006 - 09:00

It think we all have to balance our child's need for safely w/the need to live a normal life. And there is no rule book.
Many of us have had times where we've let our guard down only to have a reaction slam us back into hypervigilance.
I'd recommend you get the book "Food Allergies for Dummies" and show that to your doctor. Dr Wood gave himself 5 shots of epi after eating cookies that were lifted off a cookie sheet w/ a cross contaminated spatula.
When something like this happens (like in your sons case) its not a "may contains" its a "does contain" because there absolutely was enough peanut to cause a reaction.
There have been doctors who did not seem to appreciate or at least convey the seriousness of ltfa's to their patients. I only say this because I know several parents who have lost their children partly (or mostly?) because of this.
One mother was not prescribed epinephrine for her child. when she confronted him later, he told her that "it's so expensive and I didnt really think he'd ever need it"
So, I think you can get different opinions from different doctors but at the end of the day, you know in your heart that "innocent" foods can be very dangerous to your child.
ONe last thing and that is the test results cannot predict the severity of ones allergy. Reactions vary --you can have hives once, stomach ache the next, and full blown anaphylaxis another time regardless of whether the score is high or low.
Take care,
Gina
[url="http://www.AllergyMoms.com"]www.AllergyMoms.com[/url]

Posted on: Wed, 06/20/2007 - 6:43am
Adele's picture
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Joined: 01/31/2005 - 09:00

My first allergist also told me that it was OK for me to eat 'may contains'. His words were, "don't make a big deal out of this....of course you can eat 'may contains".
SO - I ate half a peanut - figuring that food labelled 'may contain' could contain up to half a peanut - and within 3 minutes I had stomach cramps and diarrhea.
So much for his advice! It told me that he didn't know what in the h*** he was talking about!
I asked on PA.com for recommendations, and found another allergist that I am happy with. He was horrified by my 'at home peanut challenge' (which I absolutely do not recommend that anyone else try it! It really scared me when I had a reaction)
If you read the memory thread, you'll see that many of the deaths were from carelessness; from a bakery item - ate something without knowing the ingredients - no epi pen, etc.....and the statement, 'but he only had mild reactions before'!
Many of these deaths could probably have been prevented if the person or the kid's parents had a better understanding of the rules of living with PA...and in my opinon, this starts with finding an allergist who knows what he/she is talking about.
I'd get another doctor!! (I'll raise the 'in memory thread for you"
Adele
[This message has been edited by Adele (edited June 20, 2007).]

Posted on: Wed, 06/20/2007 - 6:56am
hollya's picture
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Joined: 05/10/2007 - 09:00

Hello,
Not to say that I am happy that you are upset, but it is nice to know or hear another mother feeling the same way I do. My son who is 21 months old and has the PA drank after my husband last night. He had just finished eating some type of peanut butter bar. I was SOOOO upset & stressed all night because of the fact that he may possibly have a reaction. I told my husband today it is the fact that no one can tell me it's going to be o.k., because they don't know. All you can do is worry, but then it is bad to worry all the time to. What do you do though when you have a 21 month old that can not clearly communicate to you how they are feeling or if something is wrong. I do everything in my control to protect my son, however I can not continue to do that his whole life.
I understand your pain! This is a great website though (as I am sure you know) we all can relate.
Holly

Posted on: Wed, 06/20/2007 - 9:58am
solarflare's picture
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Joined: 02/07/2002 - 09:00

Comfort levels are subject to change... ours certainly has over the years.
------------------
Cheryl, mom to Jason (9 MFA including peanuts, tree nuts, shellfish, coconut, sesame, squid)
Joey (7 NKA)
Allison (4 milk allergic, suspect shellfish, avoiding PN/TN for now)
Ryan (1) nka *knock on wood*

Posted on: Wed, 06/20/2007 - 12:41pm
KateDe's picture
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Joined: 09/20/2006 - 09:00

"he was a 5 and then a 2 on the rast was that the actual score or the Class #?"
I feel like an idiot but I don't know. I will have to find that out.
I will look into finding a food allergist. I do like this current doctor but his attitude surprised me. But leaving him and finding yet another doctor upsets me because it will be the third one we go to. That makes me feel like a crazy mom.

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