Was this doctor out of his mind or is it me?

Posted on: Sat, 03/15/2008 - 6:25am
Ivycosmo's picture
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Joined: 09/18/2007 - 09:00

Hello,

This may be long, I apologize, but I am a little bit beside myself right now.

We recently took our DS to Mass General Hospital to see an allergist since where we live (cape cod), they are few and far between. After our appointment (which was an awful experience), the allergist wrote a letter to my son's doctor who then forwarded a copy to me. I am going to quote the letter now:

"I spent a long time with mother discussing how best to handle this allergy. Obviously avoidance is important, but one needs to be careful not to go overboard. For example, she has been [i]so[/i] concerned about his reacting in the middle of the night, which happened many years ago, that she actually gets up to check on him every single night! They are also concerned about peanut oil which I explained to them is non-allergic. They also read labels like a hawk and are careful to avoid any foods that say 'may contain...'etc, which I pointed are just legal disclaimers and his chances of reacting are very, very slim. Furthermore, one needs direct contact to react and I suspect when he reacted at a hockey game, the tightening in his throat was more of a nervous thing."

"I think mother has a bit more perspective now. Finally, we talked about a 9 year old needing to sit at a peanut free table at school. Obviously he is old enough to know better than to eat things that contain nuts."

After I read this letter I cried in anger and frustration! Is he crazy or am I? Aren't these things [i]ALL[/i] PA/TNA parents worry about? Does he not sound a little too cavalier about this? He was condescending and rude and I am beside myself. I am not a control freak, I just try to keep my son alive. What are your thoughts? Do you think I should take some action or just let it go and get a new doctor?

Thanks for listening.

BTW: at the bottom of the letter is his reaction scores. Peanuts are listed at 4++. So, how can reading labels and checking on him be considered "going overboard"?!

Posted on: Sat, 03/15/2008 - 6:53am
pfmom2's picture
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Joined: 01/22/2006 - 09:00

Wow, I am at a crossroads too. I think doctors need to listen and have an open mind too. Mind you, parents are not doctors but we are there with our kids when we see this allergy happening. They can't keep denying this is happening. More and more kids are becoming allergic and with sometimes no family history. This gets into why is this all happening?
You have to do what you feel is right for your child. If it were me (and going through something similar here), I don't know how I could take my child back to this doctor knowing their "true" feelings. And, also not feeling my child would get the best care. Sorry, don't know that I helped, but going through something similar so I can understand your frustration over what happened.

Posted on: Sat, 03/15/2008 - 7:09am
SkyMom's picture
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Joined: 10/27/2001 - 09:00

I totally understand where you're coming from. My dd's allergist has said similar things in the past. In saying that I find it is the parents who are living with this every day and act in the best interest of their children as the previous poster has said. If the chances are small, this doesn't make it ok in my opinion. Any chance on our children's lives we're not willing to take. I do not think you're crazy just a concerned parent.
In my own experience I find my dd's allergist well qualified just not living with it like we do. I hope you find comfort in knowing many parents feel as you do when this type of "advice" is given. When my child's life is at stake I will act as I need to regardless of what the allergist may/may not say.
I find the ease of getting appointments with my dd's current allergist weighs more heavily than changing doctors where there is a huge waiting list. If I could not get in as needed I would probably change doctors as well.

Posted on: Sat, 03/15/2008 - 8:52am
Krusty Krab's picture
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Joined: 04/20/2007 - 09:00

You doctor is out of his mind. Period.
Don't cry or fret; use your abilities to secure a doctor who cares about the health and prevention of reaction in his allergic patients. Don't fret too long, you can make this better.
It would be my hope that such a doctor would receive less and less allergy patients based on word of mouth about his lack of sound medical advice.

Posted on: Sat, 03/15/2008 - 9:43am
Ivycosmo's picture
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Joined: 09/18/2007 - 09:00

Thanks guys. You are right, sometimes just knowing other people are going thru it, too, helps.
When we left the hospital that day, I was really upset and my husband said, "He may be a doctor, but he doesn't have an emotional attachment to our son like we do." He was so right!
Obviously, we will NEVER see that doctor again. SO disappointing. I need a good allergist in Boston. Anyone know of one?
BTW: for all of you who live in the area, it was Dr.Lapey that we saw that day.

Posted on: Sat, 03/15/2008 - 11:20am
Newallergymom's picture
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Joined: 03/09/2008 - 15:23

Ivycosmo-
first, I am so sorry for that...as if having a PA wasnt stressful enough..!!
from what I have heard the MGH Pedi Allergy office is really good..I am shocked!! Are there any other Doctors in that office that are accepting new patients?
so sorry!!

Posted on: Sat, 03/15/2008 - 11:35am
lakeswimr's picture
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Joined: 02/01/2007 - 09:00

Wow! That was rude of him!
Sounds like he doesn't have an FA child.
Just going to go through the points in the letter.
I think if my child reacted in the middle of the night I might worry and want to check on him at night, too. I do think it would be good to *not* feel worried at night but I think it is understandable that you feel worried.
Well, cold-pressed peanut oil is certainly allergenic and even highly processed peanut oil could be a problem. FAAN says it is most likely OK but they don't say, "it is non-allergenic". And I think that is just a comfort zone thing and none of anyone's business.
People who deal with food allergies are supposed to read food labels like a hawk. I just posted a summary of the FDA report on food labeling (including lots of X-contam info) and there is a huge % of foods that say, 'may contain' or other allergen warnings that *do* contain. He is *VERY* wrong! If someone follows his advice and has a serious reaction he could be in big trouble!
Whether your child reacted to airborne allergens or touched something that had seemingly invisible food residue and then touched eyes, nose or mouth and reacted does it matter? Both are huge risks and show you need to be careful.
Um, many 9 year olds sit at peanut-free tables because there can be seemingly invisible food residue on peanut OK tables and your child could touch this residue and then touch eyes, nose or mouth and have a life-threatening allergic reaction. Some children that age eat at regular tables just fine and many still eat at peanut-free tables. Again, *not* his business! My son had ana to being at a friend's home twice. Once he was eating allergen-free food at a table that I thought was clean but had invisible food residue on it. Another time no food was out and he was playing at a play table (not a table used for food) with play dough that had been contaminated with food residue. So, reactions can happen to more than just directly eating a food.
The doc is rude and uninformed. I hope he doesn't kill someone.

Posted on: Sat, 03/15/2008 - 1:57pm
BohemianBrunette's picture
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Joined: 02/13/2008 - 19:09

That doctor is out of his mind. No, I'm not a doctor, and I'm not a parent, but my friend who has a PA (I joined PA.com because of her, actually) doesn't eat ANYTHING with "may contain" on the label, and hardly EVER accepts food from others (even "safe" foods). She isn't extremely contact sensitive, so she'll react if someone, say, touches her with PB-covered hands, but if it's just a trace, then it's no big deal. However, she says that the smell of peanuts makes her feel sick to her stomach. Now, my friend is an adult, and she can speak up if she feels threatened (like the time she asked me to sit between her and our other friend who was eating peanut trail mix, in order to create a physical barrier), but a child might not feel comfortable doing the same thing, especially if his or her school requires the students to sit in assigned seats at lunch time, or if they have to line up to walk to the cafeteria and sit in that order, or aren't allowed to get up from their seats until they've eaten a certain amount, or the bell rings, or whatever. I remember elementary school being really regimented and dominated by rules that made no sense.

Posted on: Sat, 03/15/2008 - 11:49pm
Mrsdocrse's picture
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Joined: 01/16/2007 - 09:00

That Dr is out of his mind.. I would sent him a copy of a recent article that tested "may contains" products... guess what? something like 20% of the products contained enough of the allergen to have a reaction.. so no way would i let my DS eat it. I am surprised. I would look into Boston Childrens hospital.
Obviously this Dr is not up to date onhis info with food allergies.
Also do you belong to a food allergies group? check out [url="http://www.asthmaandallergies.org"]http://www.asthmaandallergies.org[/url] they are in New england and there probably is a group near you that can recommend an allergist on the south shore. Good Luck!
THerese

Posted on: Sun, 03/16/2008 - 12:34pm
AliciaAnn's picture
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Joined: 04/20/2007 - 09:00

Wow! I can't believe that doctor. I would have been so frustrated. How dare he! You are NOT CRAZY! I think your reaction is quite normal. Allergies are serious and can be so scary! It is only natural that we as parents will go as far as we need to in order to protect our children. I peek in on my son at night sometimes too. When I read your post I wanted to cry. It is hard enough that we have to deal with difficult family members, friends or teachers. I can't imagine having to deal with that from the allergist. I am so so sorry.
We live on the North Shore and are fairly new to all of this as our son is only two. He was diagnosed last year with a peanut allergy that scored above 4 as well. I have to say that we have been very fortunate as far as doctors are concerned. Our regular pediatrician has a peanut allergic child and she referred us to a great allergist. He has been nothing but patient and understanding with us and seemed to appreciate the fact that we were so cautious. The nurses have been so helpful and never make me feel uncomfortable for calling with questions. I have a lot of questions! He even gave us a stack of photocopied articles on recent studies. He told us to avoid 'may contains' shared lines, and told us to treat the Peanut Allergy Answer Book as our guide line. The letter he sent to our family doc commended us on our work.
My heart goes out to you and I hope you are able to find a more professional and caring allergist.
Best wishes.

Posted on: Sun, 03/16/2008 - 7:37pm
williamsmummy's picture
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Joined: 03/26/2002 - 09:00

Your Doc, ( as my teenagers would say) is completely PANTS.
change ASAP.
I would also point out that in our early years of dealing with allergies, our consultants were a bit like this, and couldnt guide me on the 'may contain' issue at the time.
These days things are a bit better, esp when a study on parental stress concluded that we are more stressed , for longer , at a higher level , than someone who has cancer.
look for a more up to date immunoliogist.

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