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Trina and other moms of allergy sufferers - WARNING!! LONG!

Moms View Message Board: General Discussion: Archive January 2008: Trina and other moms of allergy sufferers - WARNING!! LONG!
By Tklinreston on Wednesday, January 16, 2008 - 01:28 pm:

You may recall my thread about my ds whom I suspected had "cold urticaria"- physical allergy to the cold. We saw an allergist yesterday who confirmed he not only had "cold urticaria but also "cholinergic urticaria", the latter is sweat & heat induced. My research pointed to this dr, who is noted as one of the top 5 pediatric allergist in DC/VA & when I asked for a referral from our ped it was the same dr. Well to put it nicely this dr was NOT nice. She had horrible people skills, came across as rude, insensitive & even combative. I tried to tolerate it as much as I could considering I was there for answers & she was so highly recommended. This was our 1st time w/a specialist. I gave her my son's history.He suffers from seasonal hayfever but last spring he virtually didn't have to take any meds at all. As a baby he had some mild eczema but only suffers from occasional itchy dry skin during the winter now. He recently had some oral allergy symptoms when he ate certain fruits where his mouth tingled & he got bubbles on his lip. We cut those fruits out. We found out that it's because he's allergic to birchtree pollen & certain fruits contain a similar protein, which can cause this reaction but it's not a food allergy so it won't test positive. Other than that, my ds has never had a allergic reaction to any food. The continual hives from the cold, which our ped thought was viral but I suspected otherwise is what prompted me to go to the specialist. That basically is his history. The dr asked me if my son has ever coughed or wheezed after exercise. I did explain 2-3 yrs ago during really bad pollen season he had a bout with a persistent cough, which only lasted a few minutes & hasn't happened since then. She immediately said he had exercised induced asthma &that he needed an inhaler. When I raised the fact that he plays basketball and soccer every season & has never had any issues she just ignored me. He did do a lung test and that was normal. Though he doesn't have asthma she says he needs to use the Provencal? inhaler 15 minutes before he does exercises. OK... so we move on to the skin tests. She says she'd like to do approx 10 tests. I agreed. I had no idea that skin tests actually have little needles that they poke into your skin. I thought they just rub your skin with the allergen. I had assured my ds he would not be getting any "shots". Th nurse comes in, who is just as mean or perhaps meaner than the doc. She explained that the dr wanted 36 tests done and proceeded to mark up his arm. Without ever explaining what she was going to do and no warning about the poke, she just started poking him. He nor I expected it & so I asked is that a needle and she says "yup"? My ds jumped alittle and said "ouch" each poke & his eyes started welling up w/tears. I felt sooo bad for him! Within seconds he started having hives & all that itchiness and stinging from the poke took ds over the edge. He does NOT handle discomfort well. He cried the whole 15 minutes while I held him. The dr & nurse were both so insensitive. The dr says "a big boy like you crying over nothing. even little 3 year olds handle it just fine.." The test came back positive for some tree nuts incl almonds & sesame, peanuts (small hive), dust mites, birchtree, maple and oak. I explained to her that my son has eaten sesame his whole life-90% of Korean food has sesame or sesame oil in it. He eats all kind of nuts & had peanut butter that morning. He has never had any reaction. My research indicates, which she confirmed, that cold urticaria has no ties to food allergies. I asked if it's positive does that 100% indicate an allergy to that food. She said yes he's allergic & he has to cut all tree nuts, peanuts and plum family fruits from his diet. She filled out a form for his school which says they are to administer the Epipen if he presents with any hives within one hr of eating. My ds goes outside for recess right after lunch. The only time he's ever had hives is fr cold exposure and not always and a simple dose of Benadryl always does the trick. Potentially the school could give him repeated epipen injections when I believe it's not warranted unless I keep him in for recess, which I would hate to do. After networking with others and doing research I've learned that skin tests can have false positives. It can mean you may be allergic but does not mean you're allergic. She directly contradicted this. You have to look at the history & symptoms in addition to the tests. I will be getting a 2nd opinion but I just wanted to get your feedback. I'll be getting rid of the carpets & replacing all our bedding for the dust mite allergy though my son doesn't present with symptoms for it.I believe it will help all of us since I believe I may be allergic to dust. My dilemma is my son has had a normal diet w/no problems with food allergies and because the skin test is positive (let's say it's positive 2nd time) do I cut out all these foods as this dr orders? Towards the end of our visit (3 hrs later) when the dr made a comment to me which questionned my intent for my ds' wellbeing and even life.. I lost it. She said "If this was MY child I would never allow him to touch these foods again as it could kill him." This was said in front my ds who is 8. I basically told her what was on my mind, thanked her for her time and told her we would not be returning. My ds is my life! I just don't want to disrupt his diet and life when it's not medically necessary. I need and will seek out answers but was hoping for any feedback from other moms.

By Trina~moderator on Wednesday, January 16, 2008 - 02:34 pm:

WOW! Thank God our Asthma/Allergy specialist is NOT like that! He has been very helpful, and is great with my kids (9 & 11). They've both been through allergy testing 3 times, and because it was explained to them and done in a kid friendly manner, it wasn't traumatic.

I *know* how tough it is, but yes, since your DS tested positive for food allergies, I would avoid those foods. He may not have had reactions as of yet, but he could at any point. After DS's first anaphylactic reaction, I wouldn't chance going through that again. Anaphylaxis can be fast, furious and life threatening. BTDT with DS! Although DD has never had a severe reaction, she has tested positive for a tree nut and peanut allergy. We don't do nuts in our house. It's just not worth the risk, especially after what we went through with DS.

I recommend getting friendly with the school nurse. All the nurses in our district have been great, and they are on TOP of my DK's health issues. If they have any questions or concerns they CALL me.

Dust mites - There are allergy pillow and mattress covers. You can buy them at Wal-Mart. A HEPA air cleaner in the child's room would also be a BIG help.

{{{HUGS}}}

By Tklinreston on Wednesday, January 16, 2008 - 02:49 pm:

Thanks Trina. I can't even imagine what your family went through with your son. I'm so glad he is ok. Was your son's first anaphylactic reaction what prompted you to get the allergy testing or were there some indications that he may be allergic prior to that? I do want to get a HEPA air cleaner or perhaps a central system. Is there a particular company that you would recommend? The allergist gave me 2 brochures for dust mite products. The "best" line is of course the most expensive. The ones you buy at Wal-Mart are they effective? I feel like I should get the "best" products out there for maximum protection.

By Wandilu on Wednesday, January 16, 2008 - 02:51 pm:

Joyce, I'm sorry you had to go thru this.I agree with you that you should get a second opionion.Also, I think you should value your research and "mommy" knowledge.A doctor that I took my children to when they were little told me one day that the FIRST thing he did when starting to evaluate and ••••• the child's problem,was to LISTEN TO THE MOTHER ! He said he had the book knowledge, but she was with the child 24/7,and together they could fiqure the thing out!! I think this DR has been in it so long,that possibly she's gotten bitter, and maybe clumps every case into the same sterotypical case. Either way, I would go elsewhere.Good luck!!

By Vicki on Wednesday, January 16, 2008 - 02:59 pm:

I have a friend whos child is allergic to nuts. He had eaten peanut butter in the past and was fine, then one day, HUGE reaction. So if you know there is a allergy there, I would avoid it at all costs. The reactions are terrible and can be life threatening.

If it were me, I would get a second opinion, but would be following the advice of the first one until your appointment.

By Trina~moderator on Wednesday, January 16, 2008 - 03:20 pm:

DS's first anaphylactic reaction occurred immediately after he put his very first pistachio nut in his mouth. He didn't even chew or swallow it. He was 3.5, and up until that point, we had avoided nuts because the general recommendation is to avoid nuts until after 3. So, we had absolutely no previous clues that he may be allergic.

We actually have an air cleaner hooked up to our central heat/AC system, but DS also has a HEPA air cleaner in his room. He's allergic to cats, and we have two in the house. Our allergist said any HEPA air cleaner will be sufficient. He didn't recommend specific manufacturers. He said it's the HEPA part that's important.

No one in our house is allergic to dust mites, but we still use the allergy pillow and mattress covers, especially after watching this.
Dr. Philip Tierno talks about what's living in your pillows
YUCK!

By Tklinreston on Wednesday, January 16, 2008 - 03:29 pm:

I guess my confusion lies in the fact that almost all of the research I've done indicates that testing positive doesn't mean your allergic. But I agree it's better to be cautious and not risk it. Thank you all for sharing these experiences whether personal or through your friends. This is exactly why I go to you guys for insight. I will get the 2nd opinion and look for an allergist that will help us deal with this in a professional and friendly manner.

By Debbie on Wednesday, January 16, 2008 - 03:58 pm:

My ds has severe allergies. He was tested, and he may even start allergy shots this summer. Right now he is taking medication, but it isn't controlling his symptons enough.

I am so sorry you had such a bad experience with the specialist. Ds has a wonderful, compassionate, doctor. He did have the skin testing done last summer, but he was prepared, and they were really good with him.

Now, ds doesn't have any food allergies, so I am not real familar with those. But, I do know ds is more allergic to some things then others. His doctor had a little device that she measured the size of the welts from the testing. So maybe his nut allergies, aren't that severe??? But, because food allergies can be life threatening, I would error on the side of caution, and cut out the foods the doctor suggested until you get a 2nd opinion.

I would definitely get a 2nd opinion. Then, you can talk about his symptons, the results of his testing, and ask any questions you have.

By Marcia on Wednesday, January 16, 2008 - 05:55 pm:

I would get a second opinion. We use an allergist who does not use needles. Some of the reactions you see are skin reactions, but not necessarily a true allergy. My kids all tested allergic to many things that they never had reactions to, when doing the skin tests. When I took them to the woman who used pressure points and a computer to test, we found out their true allergies. Maybe you could try something like that instead. It made a huge difference for all of my kids.

By Ginny~moderator on Wednesday, January 16, 2008 - 07:08 pm:

I agree with those who say change the diet right now, at least until you get a second opinion.
As for the HEPA air filters, I would check Consumer Reports, which does very thorough testing. Your library should have several years of back issues to help you with your research. If you are going to the internet for information, I strongly urge you to stick to medical school websites and .edu websites. They have nothing to sell, and no particular axe to grind, and are much more trustworthy. Here's a link to the Mayo Clinic, for starters: Mayo

By Debbie on Wednesday, January 16, 2008 - 07:24 pm:

Also, I wanted to add about the dust mites. This is one ds tested positive for. I went out and got a plastic mattress cover with a zipper that completely covers his mattress, I also have a cover for his pillow. Ds still likes to sleep with a few stuffed animals. I vacuum them frequently, and when it gets below freezing, I put them in a trash bag, close it up, and leave it outside overnight. It kills the dust mites.

By Tklinreston on Thursday, January 17, 2008 - 11:43 am:

Debbie: I was told that allergy shots have a high success rate. Best of luck to you and your ds!
Ginny: I signed up for Consumer Reports last night to do research on the various products. I absolutely agree that ds is not to have any of the things he tested positive for. I will have him re-tested and will look into the options Marcia has mentioned. Thank you all for your feedback.


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