Newly diagnosed and overwhelmed

Posted on: Sat, 07/15/2006 - 4:23pm
sukel's picture
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Joined: 07/16/2006 - 09:00

Hi all,
We just found out that our 4 year old son has PA (class 6). This was a completely serendipitous finding on an allergy panel ordered to confirm cat and dog allergies, done at my request. He has basically had a runny nose since age 1 and has had several minor hive episodes that were immediately remedied with Benadryl (sister's dog licked his face, he buried himself in a blanket cats sleep on, unidentified but suspected food reactions, etc). He was diagnosed with eczema at age 2 months but it has not been severe and has improved with age. We rarely use medicated lotions anymore.

I feel like there is so much to learn and am getting no guidance. I can already tell this website will be a huge help but the more I read the more freaked out I get. We have had 5 different pediatricians due to frequent moves and I have brought up my allergy suspicions to all of them. None recommended testing since he mainly had a runny nose and occasional rashes. I kept hearing stories at playgroups of kids being tested who seemed to have less reason to than my son. We recently changed Peds once again and when I brought this up, the doctor did not hesitate to order the testing. However, when the results came back, she simply told me we need to avoid peanuts and to read labels carefully for cross-contamination. Lucky for me, he has no interest in peanut butter (and recently didn't even want me sitting near him when I was eating it). He has definitely been exposed but has had no more than a taste a few times because he rejected it so strongly. He also doesn't like chocolate, and now I think I know why.

Only after coming to the internet and doing my own reading did I learn about the need for an Epi Pen and when I called the Pediatrician about it, she was shocked at herself for not having prescribed it right away. So, now we have that in hand.

Am I correct in my understanding that he needs to be under the care of an allergist? I'm thinking this will initially be for our education, but also possibly for more thorough testing to tease out other legumes, tree nuts, etc allergies that can often occur with PA. We have an HMO, so I'll have to get back to the Peds to make that request.

I feel so lucky to have this knowledge without having had to experience a severe reaction, but I'm not feeling like there is enough preventative advice coming from our doctor and of course, I'm feeling a bit overwhelmed by all of the info. Thanks to you all for being here and sharing your stories and knowledge.

Susie

[This message has been edited by sukel (edited July 16, 2006).]

Posted on: Sat, 07/15/2006 - 8:44pm
PAMomInPA's picture
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Joined: 04/04/2006 - 09:00

Well, our allergist really didn't do much more than your ped. We saw an NP, I think, so I don't know if seeing an actual doctor would have made a difference. We were told to avoid peanuts, nothing was really discussed about cross-contamination (although I was aware of it), she handed me a sheet with a list of web addresses and circled one for food allergies, prescribed the epi and had the nurse do a demo (and gave me a dvd). She said we'll test again when he's older.
Then I came here and learned the rest. From what I learned here, while I'm disappointed in the info I got from the allergist, I don't think there's a reason to go back. At this point, it's all about learning about avoidance (including avoiding SPTs which there were smart enough to do at my allergist, thank God). There are no reliable treatments yet.

Posted on: Sat, 07/15/2006 - 8:49pm
PAMomInPA's picture
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Joined: 04/04/2006 - 09:00

I just re-read your message, and if they didn't test for anything besides peanuts (which seems odd), you might want more testing if he's still having problems. We never tested for other legumes (besides soy), just some other usual allergens. I don't plan on testing for anything else unless I see some sort of reaction. The truth is, even the RAST isn't always accurate and the results can make people crazy sometimes, when they start testing for things willy-nilly.

Posted on: Sat, 07/15/2006 - 9:16pm
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Joined: 01/28/2006 - 09:00

Hello and Welcome [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img]!
You have found a great resource at this forum.
My opinion is that you can't go wrong adding an allergist to your doctor mix. All doctors have different levels of "bedside manner" and some are better at educating us than others. An allergist will be able to address all of your child's allergy issues and monitor their changes over the years more effectively than a pediatrician who does not specialize in these issues.
If our allergist does something or tells me something that "just doesn't sit right" I always call the pediatrician for a second opinion and further information.
Our allergist is very talented and educated but horrible at explaining things to me. So far I have been able to make this work as I see great value to her education and I am fortunate for this site and my pediatrician who can make things clearer.
I too am surprised that tests were not run on other allergens. If you suspect something else is causing reactions including minor skin reactions I suggest you request further testing.
This is a bumpy road we all travel, educate yourself and you will do great by your child!
------------------
Keep Smiling
DD - allergic to peanuts, tree nuts, coconut, and egg

Posted on: Sun, 07/16/2006 - 10:47am
sukel's picture
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Joined: 07/16/2006 - 09:00

Thanks for your replies. I guess I shouldn't have my hopes up for more info from the allergist, but at least I'll be armed with about a hundred questions, so maybe that'll get them to talk....
My son was tested for several allergens on the panel, just not the additional ones that seem to occur with PA. There were a bunch of plants and mold, dog and cat dander, cockroaches, dust mites, egg, milk, soybeans, and wheat. He was class 4 for dogs and cats, and class 1 for milk. He has never liked cow's milk (or ice cream) and I knew that he didn't have to have it, so we just make sure he gets his calcium from other sources.
I thought it would be a good idea to do more specific testing for the tree nuts and other legumes to see if we need to avoid those also, or just peanuts.
Susie

Posted on: Sun, 07/16/2006 - 10:50am
sukel's picture
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Joined: 07/16/2006 - 09:00

PAmominPA -
What is an "SPT" that you refer to? Is that a scratch test?
Susie

Posted on: Sun, 07/16/2006 - 1:36pm
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Joined: 05/28/2009 - 16:42

My pediatrician took forever to send my pa tna asthmatic son to an allergist. I finally told her who I wanted to see and she said, "that's a good idea!" Find a good pediatric allergist, if you can. Our doctor has been wonderful. He is basically my son's primary physician...I take him in when he has a cold, and I call with questions, the doctor is always helpful and he takes my son's allergies and asthma very seriously.
Also, feeling overwhelmed is totally normal. I know this is hard to believe now, but you will be fine. Learn all that you can, there are a couple of great books by mom's with food allergic kids that I found very helpful (Marianne Barber and Lisa Cipriano Collins), and there are always people here who understand exactly what you are going through!
------------------
mom to Ari(6) - severe nut allergies, asthma, you name it - and Maya (8), mild excema
[This message has been edited by that'smetrying (edited July 16, 2006).]

Posted on: Thu, 07/27/2006 - 12:35am
snowcat749's picture
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Joined: 07/27/2006 - 09:00

Like you we just found out that our 2 1/2 year old son is severely allergic peanut, tree nuts, eggs and shellfish allergy. I can relate all to well with being overwhelmed and scared. Please find a good allergist and see him right away. Get a copy of all the tests from the ped and bring to the allergist. There is a lot more that the ped should have told you, he/she is obviously not very familiar with food allergies. Finding the right allergist can make all the difference. On our first appointment our allergist spent 2 hours talking to us and explaining everything. There are wonderful sites out there with tons of information. You may want to join FAAN, for $30 a year they will send you tons of info. The main thing I find out is to educate yourself and everyone else around you. I now make all family, relatives and anyone that comes close to my son wash their hands with soap and water and before they come near him. And absolutely no kissing on the lips. When we go out to eat, we stop at McDonalds first to get him a kid

Posted on: Thu, 07/27/2006 - 2:22am
Momcat's picture
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Joined: 03/15/2005 - 09:00

Just be careful about eggs at McD! We have found that they cook the eggs at breakfast on the same grill surface as the burgers.
Cathy
------------------
Mom to 7 yr old PA/TNA daughter and 3 1/2 yr old son who is allergic to eggs.

Posted on: Sat, 07/15/2006 - 8:44pm
PAMomInPA's picture
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Joined: 04/04/2006 - 09:00

Well, our allergist really didn't do much more than your ped. We saw an NP, I think, so I don't know if seeing an actual doctor would have made a difference. We were told to avoid peanuts, nothing was really discussed about cross-contamination (although I was aware of it), she handed me a sheet with a list of web addresses and circled one for food allergies, prescribed the epi and had the nurse do a demo (and gave me a dvd). She said we'll test again when he's older.
Then I came here and learned the rest. From what I learned here, while I'm disappointed in the info I got from the allergist, I don't think there's a reason to go back. At this point, it's all about learning about avoidance (including avoiding SPTs which there were smart enough to do at my allergist, thank God). There are no reliable treatments yet.

Posted on: Sat, 07/15/2006 - 8:49pm
PAMomInPA's picture
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Joined: 04/04/2006 - 09:00

I just re-read your message, and if they didn't test for anything besides peanuts (which seems odd), you might want more testing if he's still having problems. We never tested for other legumes (besides soy), just some other usual allergens. I don't plan on testing for anything else unless I see some sort of reaction. The truth is, even the RAST isn't always accurate and the results can make people crazy sometimes, when they start testing for things willy-nilly.

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