Questions to Ask the Allergist

60 replies [Last post]
By CindyBarnes on Sat, 02-06-99, 20:57

My husband and I are taking our 13 month old son to a new allergist (we weren't happy with the first one we visited).

Since learning of my child's peanut allergy, I've started compiling a list of questions to ask the new doctor. I haven't had time to completely search peanutallergy.com or other web sites, so I don't know if an "official" Frequesntly Asked Questions (FAQ) document exists or not. If someone knows, please send a pointer. I've seen a few documents which answer a couple of basic questions, but I want a *comprehensive* document, in the style of many of the USENET and other BBS FAQs.

At the end of this message, I'll list some of the more general questions I've got so far. If anyone has questions to recommend or things we should bring up with our new allergist, please let me know. I've learned that it's CRUCIAL to ask the right questions. And yes, I already know the "standard" answers to many of these questions (many of them are probably, "we don't know," and "it depends,") after reading these discussion groups, but I'm going to ask them anyway to get another professional's opinion.

Thank you!!

--Tracy

Questions to Ask the Allergist

If he has a reaction... do we treat with benedryl as a first course of action unless he can't breath? Or automatically treat with epinephrine, no matter what? What is our action plan?

Is epinephrine dangerous in any way? If so, in what way? What is the proper dosage for a 20 pound baby? Does the Epi-pen jr have too much dosage?

Is he sensitive enough that he cannot touch or smell peanuts?

Does anyone outgrow peanut allergies?

How common are peanut allergies? How many children have them? Are they increasing, in your opinion?

Are there any local support groups -- parents with children with peanut allergies? What local resources are available?

Soy allergy (my son has a slight soy allergy)... will it get worse? Will he grow out of it? Does more exposure mean more chance he'll have a serious permanent allergy? He had soy formula for at least 3 months and we didn't detect anything... Could soy exposure make his peanut allergy worse?

Can vomiting prevent a more severe reaction?

How accurate is the blood test to diagnose the allergy?

What does 5 out of 6 (on the blood test) mean? Does it mean more severe reactions, or more likelihood that he has the allergy or he's more sensitive than most people who are allergic to peanuts???

Do you know of other children with his severity? What have their reactions been like?

Is it possible he will have less severe reactions when he gets older? Or, do reactions get more severe each time? We've heard both...

How likely will he suffer a very severe or life threatening reaction? How many patients do you have that experience this often? How many of your patients have died? Why has this happened?

How is asthma related? (Does our child have asthma?) We have read that people are at more risk for a fatal reaction if they have asthma. Is this true?

If we can keep him away from peanuts and he doesn't have reactions, could his sensitivity decrease in time?

Have you heard of the vaccine that is being developed by Dr. Hugh Sampson and his team? How likely is this vaccine going to be available and work? When will it be available?

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By MichelleR on Sun, 02-07-99, 00:53

Tracy,
I would also ask the action plan for airborne exposure with reaction and if he touches peanuts and reacts. This was never addressed with us and I ended up in a slight panic when my son reacted to the smell and I didn't know what I should do.

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Valerie

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By CindyBarnes on Sun, 02-07-99, 02:04

Valerie,

Good point wrt airborne/smells action plan. I've added it to the ever-growing list.

--Tracy

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By mrmyles on Sun, 02-07-99, 05:24

Hi Tracy: You have covered so many of the questions that I also have. Please let us know what your Allergist's answers are to these questions. My guess is he probably won't have definitive answers to a lot of them as this allergy is so unpredictable. Good luck!

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Colleen

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By CindyBarnes on Sun, 02-07-99, 22:38

Colleen,

We're supposed to see the allergist this coming Thursday, so I'll be glad to report any interesting things we learn. I have a feeling we won't have enough time to go through all my questions -- you know how busy these doctors are. I may print out a copy of all my questions for him and schedule a phone appt with him.

--Tracy

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By mrmyles on Mon, 02-08-99, 06:21

Hi Tracy:

I know how busy these specialists are, but who better to spend their time with than the mom of a kid with such a severe allergy as this one is!!! To be honest with you, I have never seen an allergist regarding my son's peanut allergy, as there are none in our area. Since my son is entering kindergarten in September though, I am going to make an appointment with our pediatrician and ask him to refer us to the closest allergist
(which I think is four hours away from us).
I am very curious as to what his reply will be as I find him ever so slightly on the arrogant side. I have a feeling that he will say its not necessary, that he can answer my questions. I intend when I do see him to ask most of the same questions as you are going to ask, and I would love to compare notes on it. I think, WE (and our kids) are the becoming the experts, the ones that have to live with this day to day!! Thank goodness for this Website! I have learned so much!

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Colleen

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By mrmyles on Mon, 02-08-99, 06:22

Hi Tracy:

I know how busy these specialists are, but who better to spend their time with than the mom of a kid with such a severe allergy as this one is!!! To be honest with you, I have never seen an allergist regarding my son's peanut allergy, as there are none in our area. Since my son is entering kindergarten in September though, I am going to make an appointment with our pediatrician and ask him to refer us to the closest allergist
(which I think is four hours away from us).
I am very curious as to what his reply will be as I find him ever so slightly on the arrogant side. I have a feeling that he will say its not necessary, that he can answer my questions. I intend when I do see him to ask most of the same questions as you are going to ask, and I would love to compare notes on it. I think, WE (and our kids) are the becoming the experts, the ones that have to live with this day to day!! Thank goodness for this Website! I have learned so much!

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Colleen

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By mrmyles on Mon, 02-08-99, 06:48

Oops! sorry about duplicating my message above!

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Colleen

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By CindyBarnes on Mon, 02-08-99, 15:25

Colleen and Everyone,

Perhaps we should create the definitive Frequently Asked Questions (FAQ) regarding this subject. Maybe there's an allergist who could help us do this. We can start with my questions and add to it.

I'll see what kind of response I get from the allergist on Thursday before doing anything else.

Along these lines, I've been kindof surprised by some of the people I know who are afflicted with this allergy -- few of them are very informed about it and when I've called to tell them what I've learned from this website, FAN, and other areas on the Internet, they've been amazed. And I'm thinking.... what is your doctor telling you, or not telling you??

--Tracy

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By Mike and Missy on Thu, 02-11-99, 00:59

Tracy,

I am taking my 2 year old son to the allergist for the first consultation visit on Feb. 16. I also intend to ask some of the same questions. I would love to compare answers with you and Colleen. I also got a e-mail today from FAN. It is a good article on Food allergy testing. Would you like me to post this note? It had a very interesting comment about the skin testing being more sensitive than the RAST. I am going to ask if this is true.

Good luck,
Carol S.

__________________

Michelle

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By Luke's Mom on Mon, 02-15-99, 04:46

WOW, everyone has me thinking about my visit with the allergist a year ago and how he wouldn't test my son for other allergies. Because he wouldn't test him, we don't allow him near cats or dogs as my husband is very allergic to these animals. The allergist said, all most quote, that he would not test for other allergies because my son was too young and could either grow out of allergies or develop new ones. But now you've got me thinking about how I had to drag him away from the pony rides at the circus "just in case" he's allergic to horses too, would be lots easier to know what he is allergic to "right now". Look forward to reading doctor visits results.

__________________

Luke's Mom

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By sophiesmom on Mon, 02-15-99, 20:30

Great questions. I am taking my 3 year old for the first time Feb. 17th. We know she is a 5 from a rast test her pediatrician did. I will post any good information I get so we all can compare. I have heard the allergist I am seeing is a good one. I am in NJ so if anyone knows anyone or needs one, I will let you know how she turns out.

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By scott's mom on Mon, 02-15-99, 21:36

Hello everyone
Is everyone here seeing a pediatrition, or a family DR.?. Is the allergist a pediatric allergist?. I am curious to see the differences and or simularities,pleasw keep us posted, to those who will be seeing the allergist in the near future.
Good luck

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By sophiesmom on Wed, 02-17-99, 20:12

Hi Everyone! Took Katherine to her pediatric allergist this morning. I have a lot to digest and only a couple of minutes. I will write more when I have time. I printed the questions from above, but didn't touch formally on everything. She spent a 1 and 1/2 hours with us and was supportive. She showed us an anaphylactic movie and would have showed us Alexander the elephant who couldn't eat peanuts, but I told her we had it. First of all, let me tell you I cried during the movie and I was feeling very overwhelmed. I am now feeling more in control and believe if I take precautionary measures and keep all mymedications with me even if there is a problem I will be able to deal with it. Anyway here is some of what I found out and when I have more time I will post the rest of it.
1) You never grow out of a peanut allergy.
2)She did not care that Katherine was a 5 on the RAST scale. She said if you are a 1 or a 6 you are going to do the exact same thing.
3)Use Benadryl for small reaction - some hives. Use epi-pen for any bigger reaction and go to hospital. She also said to always carry two epi-pens for many reasons which I think we all know. Also she talke about the second reaction problem. When you can have another reaction 3 - 9 hours later. She told me if she a few hives around dinner time, she prescribed me prednisolone steroids. I would give her two teaspoons call her and that should protect her from a second reaction. I was very worried about letting a child go to bed. But she told me she has never had anyone hve a second reaction after using the prednisolone. Remind you this is for a minor bit of hives. All other reactions you should go to the hospital.
4) She also prescribed me Claritin tabs. She told me Katherine should take one before going out for a big function. We have a Chinese New year banquet Sat. So I will give her one and also double and triple check all foods. PS Asian and Irish seem to have the most allergies according to her. My husband is Chinese and I am Irish. She suggested someone in my family should become an allergist (joke - but not a bad idea)
5) Does not appear to have asthma but cannot really test her until age 6 when she can breathe in that thing. She did seem to think Katherine had other allergies, but is wary to test for maoore at this age (3 - 6)

Got to Go to the bus stop I will post more tonight after I get other kids.

Hope this helps

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By CindyBarnes on Thu, 02-18-99, 02:40

Patti,

Thank you for taking the time to summarize your visit to the allergist. I've been trying to find some time to summarize our visit... have been very busy.

First of all, my baby was very active during our appt... you know how that goes... but as a result, we had a hard time asking questions and concentrating on the answers. It would have been nice to hand my baby off to someone after he'd been examined -- maybe I'll take a babysitter with me next visit to help.

Our allergist seemed to think some kids might outgrow a peanut allergy, but I don't think he was trying to give us false hope. I think it's unlikely our child will outgrow his, but it was nice to hear that it could happen.

The allergist had not heard of the vaccine in development. When I asked him if he knew about it, he thought I was talking about those immunotherapy trials where someone died. After our appt., I sent him some information written by Mary (on this web site) last Nov/Dec which summarized the latest research. (Thank you Mary, wherever you are.)

He told us the Epi-pen Jr. was fine for our 20 pound baby (we had some concern about the dosage level -- 2 other doctors had told us it was too much).

Related to the allergy issue... Our baby has a lot of eczema, so he told us to give him a teaspoon of Zyrtec (prescription) every night, use 2 1/2% hydrocortisone (also prescription) on the worst spots twice a day and use Complex 15 lotion (over-the-counter) twice a day. We've been doing that for 6 days now and his skins looks so much better -- in fact it has never looked this good. He actually has baby-soft skin. We stopped the Zyrtec and hydrocortisone this evening and will use it as needed from now on. The allergist told us his eczema may be always-present, that it may be hard to identify the cause. He said we could put him in a "clean room" with no allergens and he may still have the eczema. Hopefully he'll grow out of that; many children do. (I was happy this allergist addressed the eczema and prescribed some medicines to help; the first allergist didn't. He's also going to test for house dust mites, which is a common cause.)

The allergist had seen severe peanut allergy cases, but no children had died.

We asked him about the RAST test score of 5. He said it doesn't necessarily indicate that his reaction will be severe. Another allergist (a friend of a friend) talked to me the other night and she said that the 5 indicates a severe allergy and that he's more likely to suffer an anaphylatic reaction, but it's not a for sure indicator that he will.

However, my son did have an anaphylatic reaction the first time, but he didn't have problems breathing.

(As an aside... I can handle these so-called anaphylatic reactions as long as he doesn't have a problem breathing. If I knew that the worst of it would be hives and throwing up, I'd relax more. It's the unknown that's so hard.)

We're having another RAST blood test done, this time testing for a ton of other food allergies. The allergist did tell us that the information may not help (false positives, false negatives, etc.).

We don't know if he has asthma and it's too soon to tell (he's only 13 months old).

I think these are the main topics we discussed. We've got another appt with the allergist to go over the RAST test results, so I'll follow up with more questions then and will report back if I learn anything else interesting.

--Tracy

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By on Thu, 02-18-99, 04:09

Tracy, if it helps any, our son who is 4 1/2 had eczema really badly as an infant and toddler. He itched so badly he thought that was how you were supposed to feel. (It broke my heart)...anyway, his allergist prescribed Elocon Steroid Cream and it was like a wonder drug for his skin. He has now been eczema free for about a year now so there is the hope of them outgrowing it. We found that chocolate really intensified his eczema and with the peanut cross contamination in so many chocolates, we just strictly avoid it.

Hope this sends some hope your way.

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By CindyBarnes on Thu, 02-18-99, 15:56

Connie,

Thank you for your encouraging words. I'm not as worried about the eczema -- have been thinking he'll probably grow out of it. But it does break my heart to see my little baby with so many red spots... he'll sit on the floor and rub his little leg against the scratchy carpet. Wah! We'll ask the allergist about the steroid cream you mention below if his eczema continues to cause problems.

What I am starting to get concerned about is that he'll develop asthma at some point. There's another thread going on in this BBS about that (the trend of many children with peanut allergies developing asthma). No-one in either of our families has asthma (but no-one has a lifelong food allergy either). We'll see. He's only 13 months old.

We have also decided to avoid chocolate because of cross-contamination concerns. My husband had an allergy to chocolate as a child (which he outgrew), but he said he never missed it because he never had it. So I figure we just won't eat it so it won't be an issue.

Thanks again,

Tracy

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By sophiesmom on Thu, 02-18-99, 18:11

It's me again. I didn't get to post again last night, well because I think I probably had a nervous breakdown. Let me first preface this with the fact that I am a worrier to begin with and now that I have something to really worry me, it's scary. Anyway I don't know if things are worse at night when you are putting an innocent child to sleep or what, but I am feeling better today. I can't tell you how therapuetic it is writing to this board. I know that you guys know how I am feeling. Not even my husband relates to what I am feeling. He is definitely the opposite of me which I guess is good, but I take his lack of worry as sometimes not caring. But I know he does. I was glad he went to the allergist with me because I think he needed to hear frome her and not just me. Anyway back to the appointment. I really want to write some of what I got from the appointment before it fades. I feel like now that I have digested some of what she said I could go back and talk to her again. But here are some other points I remember:

1) Peanut oil - hot pressed oil does not bother people with allergies, but cold pressed oil does. She said that labeling is not very good when it comes to this so she would avoid all peanut oil. Fine by me>

2) Surprised that I did not breastfeed Katherine because her score was so high and had not been exposed other than that one incident. Again have thought about that and would liked to have elaborated on that point. Have thought about checking the ingredients for the soy formula I used for her. what protein or oil was in there. Next time I am in the supermarket I will check.
3) Did not know any information on the vaccine, but did state that there is nothing available now that has been proven.
4)Asked her if she had other cases like Katherines and she has a lot. I could not ask her if she knew anyone that died. I had it on my lips, but I don;t know if it was because I had one of my sons with me or I just didn't want to hear it.
5)Asked her if she thought there were more cases of peanut allergies. She did not think so, but she did add that more people eat such a bigger variety of foods now a days.
6)Gave me a form for a medic alert bracelet
7)She said teenage years are the hardest because teens feel invincable. I kind of remember that. So we have to really train them young. She remarked thats when you see kids take chances. It never happened before so it won't happen now.. etc.
8)She would avoid all foods that say "may contain" - don't take a chance it is not worth it (my husband asked that question - it goes back to she always ate it before... but you never know what will happen the next time)
9)When you get your epi-pens get two from different lots in case of a recall.
10)I know there is more but... my mind is blank. If I think of anything else I will write.
Also I don't remember which board I read this on but I am all for the Island. Sign me up!!!
Lets stay informed and next time I have a breakdown I just might have to start a just need to cry board discussion group.
Thanks.

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By on Thu, 02-18-99, 18:40

Hi All,

Patti, my heart goes out to you...I feel the exact same way about the night time. Sometimes when I post on this board late at night (when I can fully digest what I am reading without a hundred interruptions) it seems like every feeling I have been holding back for the last 4 years seems to flow with the stroke of the keys on the keyboard as I type. Sometimes at night when I do have too much time to think and I have posted something with high conviction, I'll wake up and think uh oh, maybe I was too strong in my opinion, or I hope my point came across without stepping on someone's toes.

My husband is always telling me I am over protective but it is our maternal instinct to protect our children and this board is my "get away" where we can have our feelings and insecurities validated by other people going through what we are going through. We all may have a different way of doing things, but the validation is there and we are here for each other.

Tracy, I too fear my son will develop asthma. I read on one of the posts that it will rear up at about the age of 7. My son goes back for his yearly appointment with the allergist in a couple of months and I will reapproach the subject with him. I also read that children with eczema can have a false positive with the skin test. My son has been going back to the allergist yearly to be retested for the egg allergy since he keeps testing positive. Now I wonder if we should have another blood test for a better confirmation.

Keep your chin up!

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By alijen on Thu, 02-18-99, 20:34

Patti,
I feel the same!!I hate this allergy thing.My husband and I have been a wreck. There has been so much in the papers lately with the schools. They have to do something. We are with you with the the private Island. My son with the allergies is 15 months old and his older brothers came home from school last week when they had their Valentines Party and with all the candy. I was going crazy. One of my sons goes to a peanut free pre school and came home with peanut butter!!!I was so upset.
Tracy-Good luck with the tests. When we went back for the results we got a sitter for the baby and it helped so we could really go over everything. My son also had alot of other food allergies so we had a ton of questions. My son had really bad exezma and once he went off of soy formula on to rice milk it seemed to clear. That asthma thing also really scares me. So far he is clear of it. Did your allergist tell you when you would give the epi-pen if he ever ate peanut products? Ours told us not wait for a reaction but I have heard diffrent from other people and was wondering what your doctor told you. I need to talk more to my doctor about that. Good luck

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By Luke's Mom on Thu, 02-18-99, 20:44

Connie, Patti, rest of us worrying mums,

I, too, feel a tug at my heart when reading Patti's fears, and then Connies. That's what is so wonderful about knowing you are not alone. I am prepared to spread the word about peanutallergy.com because I know there are sooooo many other parents out there staying up late at night staring at the ceiling and thinking of all those "what ifs". Patti, I hope we can help you too, get through this tough time. My husband went out my son three times last week without the Epi! I was so upset that I asked him what he would do if he was responsible for our sons death (and this is putting it in the nice version). I know he loves our son dearly, but he just has no idea how quick things can happen, and to be unprepared is unthinkable for me. I saw my son with paramedics hovering over his little body talking franically to the Children's Hospital - that image keeps me going - my husband never saw this, I hope he never does. And I hope this scares you in a positive way - to keep diligent about your childs surroundings. Hang in there.

__________________

Luke's Mom

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By Mike and Missy on Thu, 02-18-99, 21:08

Hello everyone,

We took my 2 year old son to see the allergist and get the RAST test done on Tuesday. Hope to get the results back in a week. My son also had bad eczema when he under 1. His doctor thought it was the formula and put him on soy. He was only drinking a bottle a day (I nursed him until he was 1 year.). We switched him to the soy but it turns out 'part' of his eczema was caused by lanolin in his baby lotion. I also switched to frag-free All deter. and no fabric softener. I don't know if this did it or he just out grew it, but my doctor doesn't even see it now. If he starts to get dry, I put frag-free keri lotion and he seems to be fine at 2.

I'm just wondering, I noticed a few people saying that their baby used soy formula. Soybeans are in the peanut family right? Do you think this could have 'sensitized' them?

Carol S.

__________________

Michelle

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By Mike and Missy on Sat, 02-20-99, 00:23

Hello,
We just got my son's results from the RAST test. He tested a 5 out of 6. Pretty bad.

I wanted to list some of the questions and answers from my visit to the Atlanta Allergy and Asthma clinic.

In a reaction, use Epi-pen jr. or the benadryl liquid? If just hives and no breathing problems use benadryl, if breathing problems use Epi-pen jr.

Is peanut allergy related to developing asthma? They have seen or heard of no connection. They said my son should not develop asthma because of his allergy. But, in a reaction to peanuts he could show asthma symptons.

Can he outgrow the peanut allergy?
They have had cases where the child grew older, the child could then eat peanuts. They asked me to have him tested in three years when he is five. His allergy immunity is still forming.

Peanut oil , safe? Good quality refined peanut is safe vs. cold pressed. But, advised avoiding it because if the factory processing had a problem and did not kill all of the peanut protein during processing, we would not know it until the reaction.

Is a 5 out of 6 mean a severe reaction next?
My son has only had hives before. They said that because of the score he is more likely to have a severe reaction.

How accurate is the blood test?
Very accurate. I still wonder myself about if one can test positive for life but not really have reactions. I forgot to ask that question.

They are sending a copy of the results and other info in the mail to me.
They also said do not leave your child in preschool or anywhere where they will not take you EPI-pen or not know how to use it.

They have a form letter which is signed by the doctor that can be given to a preschool etc. that does not under the need for the epi-pen or the seriousness of the allergy.

Tracy,
Did you get your second results back yet?

Carol S.

__________________

Michelle

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By katiee on Sat, 02-20-99, 01:40

Hi ~

It's so interesting to see that we all worry and pray about the same things. I just want to add my list to this...I go through similiar things in my mind as well.

Hang in there guys ~ stay in touch here and we can help each other. Spread the word and lastly...stay safe.

Nicole :-)
Mom in Michigan

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By CindyBarnes on Sat, 02-20-99, 02:03

Carol S.

No -- haven't gotten the 2nd RAST test results yet. We have another appt with the allergist next week; he said he would go over the results with us then. I'll report back if I hear anything interesting.

--Tracy

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By CindyBarnes on Sat, 02-20-99, 02:38

To everyone who has experienced (or are currently experiencing) the "breakdown" phase when you found out about the peanut allergy:

Yes, that happened to me -- about a month ago. I freaked out, big time. Couldn't sleep, cried all the time, had a hard time concentrating at work (didn't feel like working at all), didn't feel like eating, etc. etc.. I got on the Internet and read every single article I could find about peanut allergies. The more I read, the worse I felt. I swear every single article starts out, "Peanut allergies are the most fatal of all food allergies..." It got so bad that I had to turn off my computer and stay away until I felt stronger to deal with this.

Yeah, I'm the one who suggested the island when I was feeling particularly bad.

Funny thing... the more I was upset, the more calm my husband got. He kept telling me, "He'll be fine. Don't worry." I felt like my husband wasn't informed enough or else he'd worry as much about it too. I imagined scenarios about my 13 month old son when he's old enough to go to college... what if he gets drunk at a college party and someone feeds him peanuts as a joke? Stuff like that kept me up at night. (Irrational, but it's amazing what you focus on.)

Anyway, I've read enough psychology self-help stuff to know that the more worrying I took on, the less my husband needed to worry. I was doing all the worrying -- and then some -- for the both of us. Once I calmed down a bit and stopped obsessing, all of a sudden my husband started being the worrywart and I got to be the "rational" one.

I decided to take one day at a time. We've gotten through plenty of days with no problems, so if I stop thinking about the rest of my son's life and just worry about today, it's easier to manage, mentally.

I decided that for now, I would just feed my son at home. Once I'm "stronger" and I feel more knowledgeable, I'll take on the restaurants. Perhaps I'll help educate the local restaurants.

I also got a lot of hope when I found out about that vaccine that those researchers are working on. My husband, who has a medical mind, was very encouraged by what he read. He said, "this is stuff these researchers know how to do, they just haven't focused on it before now." I called the Food Allergy Network (FAN) and asked them if this vaccine was real and they said yes, the research was *very* encouraging. They said that if everything went perfectly, the vaccine would be available in 5 years, but that was unrealistic... it would probably take 10 years. Well, 10 years is easier to deal with than "the rest of his life". I do not want to have false hopes about this vaccine, but everyone we've talked to has been optimistic. I also read a statement from the peanut industry that they're helping to fund this research, but I don't know to what extent. It would behoove them to do so -- the potential negative press about fatal reactions is very bad for their business.

I also decided to turn the negative energy into something positive by doing my own research and becoming involved. I've registered for the Baltimore FAN conference -- am using frequent flyer miles to get there. I hope to learn more and find out what the latest research indicates. Being involved like this makes it so much easier to bear. Reading about all your experiences helps tremendously.

What still gets me down, however, is some of my friends who, no matter what I tell them, think I'm exaggerating about the seriousness of the allergy. I've got to stop getting mad at them and channel that anger somewhere else. It gets me no-where and it puts them on the defensive. But once I start getting upset, it's like a train wreck -- hard to stop. It takes me awhile to "get over it."

This is a long post (I have that tendency, I've noticed), but I wanted to let you all know you're not alone with the "breakdowns."

--Tracy

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By Mike and Missy on Wed, 02-24-99, 19:25

Tracy,
I know you were expecting the results from the second RAST test soon. I was just wondering if they gave the IGe levels? When they tested my son, they tested for peanuts and IGe. The peanuts was a level 5 but the IGe was low ,a 150. I don't have the results in front of me, this was told to me over the phone. They are mailing the results today. They told me the IGe level was a broad indication of how bad his allergies in general are, pollen etc. I was just wondering if they tested your son for this and what did they tell you it was.

Thanks,
Carol

__________________

Michelle

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By CindyBarnes on Mon, 03-01-99, 19:06

Carol,

I don't know about overall IgE level. Do you know what this level means? Please let me know if you find out anything (thanks).

My son has had 2 RAST tests in the space of a month (the first one they only tested for a few things).

His peanut score:
RAST Test 1: 2300 (level 5)
RAST Test 2: 2100 (Level 5)

I don't know if the fact that it went down 200 points is something to cheer about. Probably not since I was told that anything at that level is bad.

He also tested slightly for oats and almonds. But the doctor said he'll most likely grow out of it.

My son's eczema was much better because of the routine the doctor gave us on our last visit.

Anyway, I learned a couple of other things.

1) Vomiting when exposed is a BAD sign. There was a discussion elsewhere about vomiting perhaps being good because (the thinking was) it helped the body get rid of the offending allergen. No. It means that the body is producing so much histamine that the stomach is affected and throws it up. So it's bad -- you don't want to throw up because of the amount of histamine in your system!

2) The doctor was very seriuos about the allergy, but he used language like, "your son will have this allergy for a long time." I told him he was the first person to not say "the rest of his life." So basically, he *could* outgrow it, eventually. My current thinking is that perhaps the body becomes less sensitive if it's not exposed. I've seen other language floating around about people outgrowing the allergy after about 20 years of not being exposed.

3) My husband and I are going to have the RAST test done every year to compare results. My husband likes numbers, so he really wants to do this.

4)We took a babysitter with us which made a HUGE difference -- we were able to talk to the doctor without being interrupted every second.

5) The doctor is writing us a letter which explains the seriousness of our son's allergy -- we can give this letter to people to explain his condition.

6) The doctor explained (again to me) that any level is unpredictable... a level 2 person could have more serious reactions than a level 5 person. He said that level 5 was more likely to have a serious reaction.

7) Dr. said that our son is more likely to have asthma because he has eczema and allergies.

I think that's it.

--Tracy

Groups: None
By Rach on Mon, 03-01-99, 21:25

Tracy,
My son also had the severe eczema which is tied into this allergy problem. We took him to dermatologist as well as the allergist. We used the steroid creams as sparingly as possible and they did help clear up the big open sores on his head. Every crease on his body was also red and raw. What also seemed to help over time was to use only dye-free and perfume-free detergents on our wash and Basis soap for washing him and his hair. We did not use reg. shampoo on him until he was 3 years old. We also used Aveeno(or generic brand) oatmeal baths everyday on him and the Aveeno moisturizing lotion. By the time he was three we had the skin problem under control. At 5 1/2 years we still use basis soap and occasional skin lotion but that is all. I look at pictures of his babyhood and wonder how it felt to have his skin feel like that everyday. I hope these ideas help you with your child's eczema.

__________________

RACHEL

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By CindyBarnes on Tue, 03-02-99, 04:28

Janet,

Our allergist's recommended routine worked for our son's eczema, fortunately. He said to keep his skin as moist as possible and he prescribed Complex 15 (over-the-counter) at least twice a day. We also used some antihistamine for about a week, which helped. And we apply the steroid creme when needed. He only has rough spots on the creases in his ankle.

We also started using the dye-free, perfume-free detergent, but don't know if that's helping or not yet. Another allergist I talked to on the phone for 45 minutes recommended the following routine to rid house dustmites (always present and a common cause of eczema) when washing clothes... wash sheets, etc in the hottest water possible, use the dye-free/perfume-free/hypoallergenic/whatever detergent, but only use 1/2 the amount (she said they always tell you to use more than you need). She also recommended buying the liquid concentrate detergent, not the powder. Then she said to TRIPLE rinse. This is advice from a doctor who has done lots of research and written books about how chemicals compromise your immune system. I thought it was interesting and I've just started this washing routine with my son's clothes and sheets.

Thanks for letting us know what worked for you!

--Tracy

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By FORZACKRY on Tue, 03-02-99, 20:47

Carol S. Mentioned something about soybeans & peanuts in the same family...my daughter was on soy for about a month due to colic and during that time she had severe acne type eczema all over her face & head. The soy didn't help with the colic so we again swtiched to Nutramigen (protein hydrosylate) formula and her face cleared up in days and the colic was reduced but never gone...it still doesn't seem to be and she is 8 months. Anyway - has anyone found out if the soyformula can sensitize kids to peanut allergies. Harley just had her first reaction and I am positively panic stricken & and looking for every bit of information I can find.
thanks

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By sophiesmom on Tue, 03-02-99, 21:19

Erica I can feel the panic in your voice and don't worry we are there for you. I am not an expert but I will tell you what I think I know. First when you say Harley had her first experience, was that an allergic reaction to peanuts?
I was also involved with that discussion on soy formula. I was concerned that my daughter was so high on her RAST test and as far as I ever knew she never had any exposures to peanuts prior to her reaction at 2 1/2. I wanted to check the label to make sure thare was no peanut protein in the formula. I did actually look at the can the other day and there is not. I believe you might be allergic to one or both, but they do not cause each other. They are in the same family. The legume family. She might have allergies to both soy and peanut. My first son was also on Similac then soy and then Nutramigen. He doesn't have peanut allergies or soy allergies or any food allergies anymore that I know of.
Also I don't know how old your daughter was when her skin was so bad. Is this your first baby? It might have been the soy formula causing it, but babies also have a condition at around 1 month where their skin breaks out as a result of left over hormones in their bodies. Some babies have it worse than others. My first son had it bad for a couple of months. I would really like to have more info so I can hopefully help you. Have you seen an allergist? Have yoiu joined the Food Allergy network? Write back soon.
Patti

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By FORZACKRY on Wed, 03-03-99, 11:47

Hi Patti -
Thanks for your other messages as well!
Harley was about 2.5 months old when her face broke out so badly. She is my second daughter. My first didn't have any of these problems, (she has had her own host of health problems though). Harley had large hives all over her face within 60 seconds of barely tasting a peanutbutter cookie at 8 months old.
I have written down a huge list of questions for the allergist - mostly from the information given on this bulletin board. I'm glad that others have posted the answers to the question they had asked so that I can hopefully anticipate some of the allergists answers and question anything that sounds really of base from what I have already learned.
Will let you know after her appointment what he said. In the meantime I am going to call the Food Allergy Network today.
Thanks again!
(I think some of my more hysterical fears are beginning to subside - I must be getting over the frist phase of the breakdown)
[img]http://client.ibboards.com/peanutallergy/smile.gif[/img]
Erica

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By erik on Wed, 03-03-99, 20:35

Erica,
Don't forget to give us feedback on your appointment with the allergist!

good luck.

__________________

*Addicted*

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By Kursten on Tue, 03-09-99, 05:00

My 4 year-old son has a peanut allergy and also suffers from asthma. My allergist has never mentioned the Epipen, but it sounds like I definitely need to get a couple. I was told to take peanut out of his diet for 2 weeks and then introduce it back in. I did that and it took three weeks to get his asthma back under control. If I had known an epipen existed, I could have done that and taken him to the emergency room instead. Maybe he wouldn't have had the asthma attacks for three weeks.

I have just found this website and I am so glad I have. Thanks to all of you for bringing this to my attention. It may very well save my son's life. Hopefully it won't come to that, but if it does I will be prepared as soon as I call the allergist in the morning.

One question I have that I cannot seem to find anywhere on the internet: Some products have hidden peanut proteins in their ingredients. What are their names? I have found that hydrolyzed vegetable protein can contain peanuts. My list also includes casein, livetin, mandelona, new nuts, and ground nuts. Are there any others I should look for on food labels?

Thanks so much

Mary

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By TLSMOM on Tue, 03-09-99, 06:14

I tried posting a similar "breakdown like" post about a month ago, when we first found out (for certain) that our 9 month old was allergic to peanuts and mildly to soy, but was unable to at the time. As I read the messages above I feel as though I had already written! As I still want to continue nursing my son, I have been avoiding peanut and soy like the plague: when I first realized what I had to do, I could barely eat anything for fear of what it might contain, even if it said nothing we needed to avoid on the label. Now, I still have many questions, and even as I read the messages here I still feel extremely afraid, yet at other times I feel reassured. I can't possibly address all of what I've read, but I can discuss the allergist thing. My husband and I are not happy with the answers from the allergist we were referred to: we were given very little info. after the skin prick test being positive (3++) and when we called back with questions, he said hydrolyzed plant protein was okay, but not any of the nut or seed oil. (we were told to avoid all of these until 6 yrs. of age to avoid more allergies) He also said we did not need an epipen, but lucky for us I found this website and found someone else in my circle of friends whose son has peanut allergy. I cannot believe that so many allergists are ill informed, and it angers me: at a time in our lives when we need the most concise, up to date information and professional support, it only served to confuse us more. (we are going to ask for a referral to an allergist who specializes in food allergy, if any exist here.)

My heart also goes out to all of you who worry and feel so helpless due to this allergy. My son is just 10 months old now, and if each day was a gift before, it's even more so now. I am grateful that he is not fighting a fatal disease, but I'm not sure that this allergy can be dismissed so easily - perhaps that's part of the problem, it's "just" an allergy to some. I feel stronger now that I'm armed with information and am finding it easier to cook from scratch, but I have my moments of weakness and upset. Thank goodness for this website.

carolynn

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By Mike and Missy on Tue, 03-09-99, 21:07

Tracy,
Your visit sounded alot like ours. My son's results on the RAST test is as follows:
Immunoglobulin E 150 H U/ML <12
Peanut (F13) IGE 87.00 H KU/L
5114 H % Level 5 (a high level 5).

My son's allergist also gave us a form with Eric's name on it signed by him giving instructions for preschools etc. He also said that they have had cases of some kids outgrowning it. I'm not holding my breath but a little hope never hurt I guess. We had planned on having my son take the RAST test again in three years. I noticed that you said you were going to do it every year. Did your allergist recommend that? I might do that, it was just that my son's regular doctor had suggested waiting three. I find it very interesting and hopeful for you that your son's results went down. I not sure of your time between the two tests. I wonder could you take the test one day and the next and get a different result? I would like to learn more how this test works. Do you have any information on the test?

Good luck,
Carol

__________________

Michelle

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By MONTANNA on Tue, 03-09-99, 22:46

Hi everyone,
I am glad to know that I am not alone in the worry department, especially late at night! That is when the most irrational fears take over. My son was colicky while I breastfed him (only 3 months) and then was a different child 3 days after starting on soy formula. I should mention I ate peanut butter quite a bit. I actually tried a milk formula first but he threw that up. We later found out he had allergies to dairy, citrus, strawberries and the biggest and baddest, peanuts. I am thankful he can have soy because it is in so much and he still drinks the soy formula and he is 3 years and 3 months old. He does have a slight degree of asthma but it is brought on by respiratory viruses rather than by food. He has done so much better this year than last and has only had to use the nebulizer twice.
As far as testing goes, he has been to an allergist once who wanted to do the skin testing. He had just turned two and my husband and I decided to wait on that to see if he out grew any of them, plus we kept hearing about false positives. He did not suggest the Rast but I am going to request it next time. We are going to go in the next couple of months because I want a whole work up done before he starts 3 morning a week preschool next fall. I will get the skin test done then if my husband can agree on it. He thinks it's like torture, but I've been telling him that I have read on these boards that it is not that bad.
Also, my sister has a friend that has a son who is had several allergies, including peanut, and was tested at 5 or 6 years old and showed no allergies! I never quite believed this story because I had always heard that you don't lose the peanut allergy. Now that I am hearing it is a slim possibility, this story gives me hope because he was so young. I think I will ask my sister for her phone number so I can check out the facts myself.

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By MichelleR on Wed, 03-10-99, 02:14

Two years ago when our son had his first reaction to peanut at 12 months, he had a positive skin test. A RAST test was not done at that time. Last week I asked if we could do the RAST test. I couldn't believe it when it came back negative. I understand you can get false negatives. Has anyone had this experience or heard anything about it? We are going to have the scratch test done Monday to see what that shows. If it is negative they will probably want to do a food challege (which scares me!). I will post what the results are. I'm trying so hard not to get my hopes up too high. I don't think I could ever feed him peanuts at this point even if he does test negative!

------------------
Valerie

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By nutfreegourmet on Wed, 03-10-99, 02:32

Hi all,

I think the area of skin testing versus RAST testing is one of the most confusing to me. While my son has only had the skin test and scored 20 + on the wiel, the allergist never completely explained this to me. Both he and the nurse immediately handed me the FAN information, and reinforced the Epipen usage to me. I get the idea that the skin test is less likely to cause false positives. Does anyone have a better take on this whole issue? Your responses would be much appreciated.

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By CindyBarnes on Wed, 03-10-99, 03:51

Carol,

I don't know much about the RAST test. My son tested at 2105 ASM % REF, whatever that means.... it says Class V on our sheet.

As for getting the test every year, that's what my husband, Mr. Numbers, wants to do. We'll probably get regular tests, maybe every year or every 3 years or so. It's hard to figure out what these numbers mean, or if we should factor in false positives, how often we should test, how much faith we should have in the results, etc. I'm interested in any and all information people have. The more I know, the more questions I know to ask!

Thanks for your insight!

--Tracy

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By Blackfly on Wed, 03-10-99, 04:28

Hi Everyone:

We went to the allergist last week. Our allergist did not do any testing this time. Our son just turned 5. His history is reaction to peanut butter at 8 months; extremely positive skin test reaction at 1 yr; extremely positive reaction to skin test at 3 yrs. He has had no other exposure or reaction to peanuts since the first and only one at 8 months.
Our allergist wants to do another skin test at 6 yrs old (next year) and see what the reaction is. If the reaction is still very positive, then he doesn't suggest the CAP RAST test. If there is no reaction to the skin test then he suggests the CAP RAST test.
His theory is that because Tanner had a reaction and subsequent skin tests have been positive, there is no need for the blood test as we know he has the allergy and the numbers would be of absolutely no use to us. In our son's case, only if the skin test is ever negative then he said that the blood test could help determine the severity of the allergy. If the CAP RAST test were to come back negative or extremely low and there was no skin reaction to the scratch test then he would suggest a food challenge in the emergency room. I don't think we could or would ever do the food challenge though.

Mark

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By on Wed, 03-10-99, 15:01

Here is a link to the FAN site under Questions and it explains the difference between the Prick Skin test and the Blood test or RAST test(6th title down on the page and which test is better:

[url="http://www.foodallergy.org:80/questions.html"]www.foodallergy.org:80/questions.html[/url]

I still get confused sometimes and for the newcomers, it might be helpful.

[This message has been edited by Connie (edited March 10, 1999).]

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By nutfreegourmet on Thu, 03-11-99, 01:38

Connie,

Thanks so much for this link. I feel much better about my son only having had the skin test. Looks like from his score, we can definetely tell that the Rast would not reveal much more.

Stay Safe

Groups: None
By rlsperform on Thu, 03-11-99, 19:13

It's so interesting to see what different allergiest do. Ours would not do a skin test because my "story" was very typical for an allergic reaction and she said there is a chance the skin test itself could lead to a very bad reaction. So, we just had the RAST test which came back "only" as a 2. My husband asks: "Does this mean that he's only a little bit allergic?" The answer: Absolutely not. It's not predictive at all of what kind of reaction he may or may not have to future peanut exposure. In the future, it could just mean that you have done a very good job of peanut avoidance. If you have it, you have it, and the numbers per se don't help at all (then why do they have that classification?)

My son's RAST retesting, done about 2 years after the first one, was also a 2. I probably won't request more RAST tests, at least for a while, because he surely won't be eating peanuts, no matter what the score is. Nancy

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By erik on Thu, 03-11-99, 22:18

I find it interesting (I mean confusing) that quite a few of the allergists people have seen are saying they won't do skin testing for pn because it could cause a dangerous reaction. And quite a few other allergists (including mine) do skin testing and say it is perfectly safe. Geez, what's up with that?!?!

__________________

*Addicted*

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By CindyBarnes on Thu, 03-11-99, 23:28

Nancy and everyone,

So why do they have classifications for the RAST test if it doesn't matter? My son test at a low 5, which is scary for us, but now it apears it's no more scary than your son's level 2. My allergist said that it's not a prediction of how severe his reactions will be. He said a level 2 could just as easily have a severe reaction.

--Tracy

Groups: None
By CindyBarnes on Fri, 03-12-99, 21:08

Everyone,

I just received a letter from our son's allergist. I thought you would be interested in parts of it.

He included a copy of his diagnoses that he sent to my son's pediatrician. It's longish, but there's a sentence under the "Treatment Plan and Recommendations" that I was particularly interested in:

"... I have recommended that he be kept off all peanut byproducts strictly for the next twelve months, at which time we will re-evaluate."

This gives me some hope that in his experience, some children grow out of the allergy. I don't have high hopes that could be quickly crushed, resulting in extreme depression that has to be treated in expensive therapy for 10 years, of course. I have the "maybe my son will be the 1-in-a-million-kid-to-outgrow-a-peanut-allergy, but probably not" hope.

The allergist also included a letter which we can give to people that provides information on our son's allergy. In it he says:

"In the event of an accidental ingestion of peanuts, a mild symptom such as rash or hives should be treated with Benadryl two to three teaspoons every three to four hours.

"A more severe reaction which involves any respiratory symptoms such as difficulty breathing, wheezing, shortness of breath, difficulty swallowing or general malaise and lethargy should be treated with an Epi-pen Jr. which has been prescribed. Immediate attention to an emergency facility should then be obtained."

This is consistent with what he told us in person about how to treat a reaction. Our son tested at a 5 (a low 5, not that it matters) on the RAST, so we've been telling people that he has a "severe" allergy. I have been confused about when to use the Epi-pen Jr... if we should always use it or just if he's having severe respiratory problems. When he had his first (and only) reaction, we gave him Benadryl and he was fine. I've been told that the next reaction, should he have another one (not on MY watch, thank you very much), may be much more severe.

--Tracy

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By nbmnc on Fri, 03-12-99, 23:14

To Mary Muritishaw

The Food Allergy Network (FAN) [url="http://www.foodallergy.org"]http://www.foodallergy.org[/url] has cards to help you when your shopping ect. They list the follwing as foods that may contain peanuts: beer nuts, cold pressed peanut oil,mixed nuts, ground nuts,Nu-Nuts flavored nuts.

Foods that MAY indicate the presence of peanut protein:
African, Chinese, Indonisian, Thai, Vietnamese dishes, baked goods (pastries, cookies, ect.candy, chili, chocolate, egg rolls, hydrolyzed plant protein, hydrolysed vegt. protein, natural flavorings marzipan, nougat.

You listed casein as one to avoid. I thought that was one of the proteins that made up milk.
_

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By pratt on Fri, 04-09-99, 05:26

Hi Everyone! The day has finally come. It has been a long 3 month wait. Sean goes to the allergist today. I reviewed this post and would like to thank everyone who has contributed. I printed out questions to ask him. His pediatrician already did his RAST testing after his anaphylaxis reaction. We are going to discuss the MMR shot also. Sean is anaphylaxis to Peanuts and Eggs. I will update everyone after our visit. Again, THANK YOU ALL! [img]http://client.ibboards.com/peanutallergy/smile.gif[/img]

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By on Fri, 04-09-99, 13:53

Lynda,

GOOD LUCK!! Will be thinking of you and Sean!

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