Establishing a Comfort Level

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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.

On Jun 20, 2007

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.

On Jun 20, 2007

"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.

On Jun 20, 2007

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 ?????

On Jun 20, 2007

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

On Jun 20, 2007

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

On Jun 20, 2007

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]

On Jun 20, 2007

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).]

On Jun 20, 2007

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

On Jun 20, 2007

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*

On Jun 20, 2007

"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.

On Jun 20, 2007

KateDe, you might try asking for a recommendation for an allergist from someone here on PA.com. It helps if you know the allergist is knowledgeable about PA.

Your profile says you are in NJ. There are other members here from NJ - though I don't know where in the state everyone is located.

[This message has been edited by Adele (edited June 20, 2007).]

On Jun 21, 2007

It took me several years to find a comfort level that I was, well, comfortable with! Your current doctor is right that it seems to be more of an art than a science--the test results don't really indicate the potential severity of a reaction, and I've also found that my own child's health can affect her sensitivity. That is, when she's sick or during a season when her environmental allergies are acting up, I can guarantee you that she will be MUCH more sensitive to peanuts. When she's not sick, she can sit next to someone eating a PBJ and not have a problem. But if she already has a cold, that same situation will make her face itchy.

I think it's silly to advise a person to NOT avoid foods labeled "may contain" or something similar. I mean, it's so EASY to just skip over those foods and find something else, so why take the risk? It's not like a kid is going to starve because he has to have a Hershey bar instead of a Twix, you know?

And 12 incidents of bad reactions to cross contamination in 30 years? I don't like those statistics. How many NOT bad reactions? I'll bet those are in the hundreds or thousands. As I say, why risk it?

OTOH, I've very recently relented a bit on the subject of bakery cakes at birthday parties. Fortunately DD isn't invited to many parties (one or two a year) so it doesn't come up much. And after years of quizzing grocery store bakeries, I've found that generally speaking, the cakes are baked and decorated away from other bakery items, so although they technically are "processed in a facility...." the risk IN MY OPINION is low enough that I'll let DD have some. But only plain sheet cakes, yellow or chocolate, with regular icing. Once you get into the fancier cakes with fillings and such, we avoid them.

So our comfort level is a constantly changing thing, depending on DD's health, her age and ability to notice a reaction, the manufacturer, the food, etc.

Sarah

On Jun 21, 2007

"OTOH, I've very recently relented a bit on the subject of bakery cakes at birthday parties. And after years of quizzing grocery store bakeries, I've found that generally speaking, the cakes are baked and decorated away from other bakery items, so although they technically are "processed in a facility...." the risk IN MY OPINION is low enough that I'll let DD have some. But only plain sheet cakes, yellow or chocolate, with regular icing. Once you get into the fancier cakes with fillings and such, we avoid them.

Sarah "

I respectfully have a different opinion from Sarah about cross contamination in commercial bakeries. My friend, a professional baker with over 20 years experience in grocery store bakeries as well as fancy specialty bakeries, has urged me never to feed my PA son anything from a bakery. He said that the risk of cross contamination is very high. They do not wash out mixing bowls between batches or flavors, unless the trace flavors would clash too much with the current flavor being mixed, which makes sense to me because if I weren't dealing with food allergies, I wouldn't clean too carefully either since I consider it all to be fresh food. The only thorough cleaning I would expect a bakery to do would be after the last use of the pan or baking sheets for the day. The other thing to consider is how clean can they get their cake pans? I bought a professional grade cake pan that had extremely tight corners (it was square) and after I baked a cake I cleaned it and found residue from the cake still in it. My cleaning process was to soak it in hot water, then after a few minutes, I used a doobie sponge to scour the pan with Dawn, then I rinsed it with hot water and washed it again with Dawn, then rinsed and soaked it with more hot water and while it was soaking I used my nails to get into the corners, then I scrubbed the pan with Dawn again. It seemed like the only way to get the pan clean would have been to use a water pic on the corners. It was really strange (and somewhat humorous)that I couldn't get *all visible signs* of cake out of that pan. But I've baked 3 cakes since and given it the triple wash and soak and it still isn't pristine. I don't see how a bakery would have the time to devote to cleaning their pans more thoroughly than I did (event with a professional restaurant dishwasher).

On Jun 21, 2007

I also must say that given my own experiences (over 5 yrs of work in a commercial bakery which was fairly high-volume, as most supermarket bakeries and combo donut-shoppe style Mom and Pop's tend to be)-- she's right.

NOTHING in such a place can be considered truly 'safe' if the allergen is present. "well away from" is a relative term when cakes are being pulled on a rack through the same territory in which someone else is coating donuts with crushed peanut topping.... KWIM? And such things are common. It is [i]all[/i] multi-purpose space because of fairly tight quarters.

(Sorry-- I know this isn't what a lot of people would like to hear-- but it is based on personal experience.)

Krispy Kreme and [i]dedicated[/i] facilities like that are another story. But if a supermarket bakery has nuts on the premises, everything made or re-packaged on-site is potentially a 'may contain.' Everything. [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img]

On Jun 24, 2007

Our local grocery store bakery makes their cakes in a dedicated area. In fact it is in another room just for the cakes. I was told that there is no way their birthday cakes or cupcakes will come in contact with peanuts. In fact, I even took a little tour of the place to see how things were made. I trust this local grocery store bakery because I have seen with my own eyes how it works.

I think my comfort zone has changed even as my son has gotten a little older. We attended an outdoor party Friday night where everyone brought a snack to share. All sorts of peanut products were there...Special K bars, peanut butter cookies, etc...3 years ago we would have left (or never gone), but I told my son not to eat anything or even go near the food. He ended up playing with the other kids, (kickball, riding bikes, playing swords, hide and seek). We washed his hands when we got home and everything was fine. I was glad we went. However, if the party was indoors...we probably would have stayed home.

My son also plays baseball. He LOVES baseball. The local ballpark where he plays serves peanuts, especially in the evening when adult leagues play. Peanut shells can be found all around. He does not sit in the stands, he is in the dugout where I have not seen peanut shells. I don't leave him at the ballpark. When we get to the car he takes his shoes off and puts them into a plastic bag, we wash our hands with a wipe and go on about our day.

I just think that every situation has to be judged based upon how well you think your child can protected in each situation based upon past experience.

My comfort zone with school is tighter than an event where I am present and can keep an eye on things. We leave if I am feeling that things may not be safe. I don't think I would allow my son to go to this ballpark if I were not present.

We also keep a peanut free house, rarely have playdates that are not at our house, rarely go out to eat, take epi EVERYWHERE, etc...SO sometimes my comfort zone is tight, and other times it can be more "lax", just depends on the situation.

I think that time of year, age, health of the child, other allergies can all effect comfort zone at different times.

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