Have questions about my daughters PA (new to all this!)

16 replies [Last post]
By Dillion on Wed, 03-01-00, 23:04

I just found out today that my daughter has
an allergy to peanuts. She's also allergic
to milk and beef. I have several questions
as this is all so new to me!

First, I keep reading about people mentioning "severe" or "life threatening"
reactions. How do you know if a reaction is life threatening, other than if the child/person stops breathing? Also, is there a number on the allergy testing that could alert me to how severe her allergy is? My daughter is a 6/6 on milk, and 5/5 on beef and peanuts. Is this severe or can I not tell from this?

And how do I know if I need to have an epipen for her? The doctor didn't suggest it. So far her reactions to milk has been the hives when the milk touches her skin, but then for the last 6-8 months she's had diarrhea, cramping, gets sick often, etc.

Can anyone help me with some of this? Thanks so much!

kelly C

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By cullmer on Wed, 03-01-00, 23:25

Hi, Kelly!
I'm relatively new, too, but have found this forum to be very helpful. My daughter is PA by touch (hives), & she's never actually eaten any peanuts/peanut products, so I don't know what would happen if she actually ingested them.

Allergies are pretty complex, and most of the time, the doctors cannot accurately predict how someone will react. It sounds like your daughter's test scores came back pretty high, so I would try to learn as much as you can about them.

With respect to your daughter's peanut allergy, I recommend that you ask your Dr. for a prescription for the Epi-Pen (get 2 or 3 if possible, to keep one at home, one with you, etc.) since you never know if the next reaction will suddenly be more severe (i.e. anaphylactic shock). That is why they consider a peanut allergy to be "life-threatening." Family doctors often are not familiar with the special circumstances of peanut allergy, and don't know to recommend the Epi-Pen. If you can, try to see an allergist so you can ask lots of questions.

Keep reading the posts here, but don't let the allergies get you down! I have a niece who is severely peanut-allergic, & she & her family have dealt with it for 10 years now. She's very active in school & church & most of the time we don't even think about her allergy--it's like second nature taking care of it.

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By Kathy in Pittsburgh on Thu, 03-02-00, 04:15

Hi Kelly and welcome. This is a great forum to gather information and ideas on how to deal with a PA child.

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By Kathy in Pittsburgh on Thu, 03-02-00, 04:47

Hi Kelly and welcome. This is a great forum to gather information and ideas on how to deal with/protect a PA child.
Our son wasn't diagnosed with a PA until he was 22 months old, although we suspected he had the allergy at 14 months. Mistaken test! We have carried epi-pens ever since and he is now 4 1/2. Each reaction is quicker and more severe so please contact your pediatrician/allergist soon to get a few. My husband and I each have a "Sam-bag" (fannypack) that we keep at least one Epi, Benadryl, Benadryl cream and alcohol wipes in. That way we each always have a bag, no matter who is picking him up/dropping him off. He is in pre-k and the school also has 2 Epi-pens for him. One is maintained in the office and one is in the classroom with his teacher. If the class leaves their room to go to another room or outside, the teacher takes her "BooBoo Bag" with her. This has worked well so far.
As far as telling how severe or life-threatening the allergy is, my son's first reaction was a few facial hives that went away within 30 minutes or so. I didn't realize until later that that is what they were. He reacted to chocolate mousse in a restaurant that contained peanut butter as a thickener. The last ingestion reaction (at 22 months) occurred when my mother-in-law let him taste a bite of her peanut butter on white bread. (We had been told he wasn't allergic to peanuts) He immediately spit it out but just having it in his mouth for 5 seconds or so caused him to react within 1 minute. They were in the car and he became unusually quiet. My MIL looked in the mirror and saw him turning red and swelling up. She drove to the fire station up the road (1-2 min drive) and when they first saw him they thought he had facial burns! They were able to begin treatment while they transported him to the hospital. We could never have predicted that quick a reaction based on the earlier one. Needless to say, my MIL also has her own Epi-pens for him. This is manageable through education of yourself, your family and others your daughter has contact with. Sorry this is so long. Take care and stay safe.

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By Dillion on Thu, 03-02-00, 05:15

Wow, thank you so much for your information!
What you said about each reaction being more severe than the last was interesting! (but not in a good way, of course!) Has your son's allergist said if that is common or did it just occur in your son? There is so much I don't know yet don't know how to find out the answers! And it's very frustrating cuz it's not something you want to wait on just in case something happens! I will call my daughters allergist tomorrow to see what he says about the epi-pen. Have you needed to use it yet? I gave my daughter peanut butter just a few days ago and there was no reaction that I could see, so I guess I'm just confused as to what might happen or if she'll always just respond with the diarrhea, etc. Thank you so much for your help with all this! Any other advice you can give me would be really appreciated!

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By SharonC on Thu, 03-02-00, 19:20

Please do not ask for an epipen from your allergist - DEMAND IT!! I am wondering why he didn't write the prescription as soon as she tested positive?!? Maybe I missed the explanation, I'm just skimming the boards today. Good Luck!

__________________

Sharon C.

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By Dillion on Thu, 03-02-00, 19:38

I called my daughters allergist this afternoon and talked to the nurse there. I asked her about the epipen, explaining that I was new to all this, was there something I was missing, etc. I told her I had been browsing the internet and talking to friends and several people had asked me did I have an epipen. I mentioned to the nurse that several of you had mentioned that while a reaction one time can be "low level" such as diarrhea, etc. that the next time could be severe and it was best to have the pen.

The nurse said she'd mention it to the doctor and call me back. She did and her response was that the doctor felt that if I felt better having one, it would be no problem prescribing one for her. I still don't know if I"ll ever need it, and am just as confused about it all (grin) but I'm keeping an open mind and trying to learn as much as I can.

The nurse also said my daughters allergy to peanuts is low. She said there is a scale of 4 and she's a 2 on peanuts and a 3 on milk. I know she has responded to milk with the hives and awful gestational problems, so I guess that jives with the 2 for peanuts (diarrhea being the only reaction so far) but I guess I just don't know if that will ever get worse? Is it possible for an allergy to get worse over time? someone said to me that with each reaction the symptoms get worse. Does anyone know if this is true?

Anyway, I will have 2 pens this afternoon just in case I need them. I hope I never do!

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By jcgrubb on Thu, 03-02-00, 20:17

Wow! I would be on the hunt for a new physician if I were you! You definitely should have the peace of mind. The milk allergy alone is reason for the epi.! Why do we have fire hydrants....JUST IN CASE!!!!!
You don't have to be a doctor to know this one, be prepared! We all must do the best to avoid all these things every day, but there is the cahnce to miss something even when we're really careful. It is always better safe than sorry.
Good for you when you educated the docs office. Believe it or not you might have really enlightenned them.

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By SharonC on Thu, 03-02-00, 21:46

I'm glad to hear you're getting the Epipens today. You should thoroughly read everything accompanying the prescriptions. When my son was diagnosed as having PA, my allergist spent at least 2 hours with us one on one explaining everything from anaphalaxis to alternate names of peanut - hydrolized vegetable protein, etc.!! He also gave us a bunch of pamphlets to read at our leizure. At the time (4 years ago) we didn't have the Internet, so you are at an advantage!! This forum is great. Education is the key and as you go forward you will learn so much and pass the knowledge on to family, friends, etc. who come in contact with your daughter. I wouldn't put too much weight in the fact she reacted small. The reaction only indicates that she is allergic, it doesn't indicate how she will react in the future to exposure, only time will tell. My advice, keep her away from peanut products as much as possible!! My son was 13 months old at the time of his testing (reacting before age one to peanuts) and we have succesfully avoided severe reactions since that age - he is now 5 1/2. Keep in touch and know you are not alone!!!!

__________________

Sharon C.

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By KSG on Fri, 03-03-00, 04:35

My son tested positive at 7 mos to a variety of allergies - two being peanuts and milk. The pediatric allergist did not hesitate to give us a prescription for an epi-pen. I am really surprised that yours did not volunteer one. My local GP advised us that when we saw the pediatric allergist to get a prescription before the tests even came back positive as Todd's reaction was important enough for them to take notice. One thing I will say is definately find a doctor that you are comfortable with and is willing to discuss all the issues with you. Since my son got his allergies I have found a new doctor that has the time to spend with me just discussing everything. I am sure glad as I knew what stress breathing was (thorax tug) and we had to take Todd into ER on the weekend as he got pneumonia. I am sure I would not have acted so quickly if I had not recognized the thorax tug.
Take care and it does get easier. We have been at this for six months and things are easier. I am deligent about reading labels and my two older kids are adapting to the new eating habits. This site is wonderful for information but it does not replace the expertise of doctors.

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By Alex on Sat, 03-04-00, 03:29

Something similar happened to me. My daughter was 18 months old when she was diagnosed p.a. (blood test called RAST score of 1500). I was not prescribed an epi-pen. At that young age maybe there isn't one safe, I don't know. I wasn't even told to bring her back for a follow-up. It wasn't until she was five my neighbor, a dietician, asked where her Epi-pen was. I promptly took her back to have her retested hoping she had outgrown it. Her new score was off the chart it was so high! On this visit I was given much more info. (watched the video "It only takes one bite", told to subscribe to Food Allergy Network so I could be made aware of food recalls, etc. (FAN - [url="http://www.foodallergy.com),"]www.foodallergy.com),[/url] and prescribed 3 epi-pens and told to administer Benedryl with Epi-pen. I really like her doctor but I feel he dropped the ball on her first visit. On the second visit I found out he had only been board certified as an allergy specialist for a couple of years. I should have been told a lot more on her first visit. I would be skeptical of any doctor that I felt I had to educate. She is so allergic now that she can not even be in the same room with peanut products. I would join FAN and purchase items from them to educate yourself and anyone who might be taking care of your child. They have food ingredient lists that help identify some not-so-obvious nut ingredients (sweet lupine flour, etc.), Epi-pen trainers for practice, etc. I plan on having her tested every 3 - 5 years.

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By SharonC on Sat, 03-04-00, 18:18

I have a book titled DICTIONARY OF FOOD INGREDIENTS - THIRD EDITION by ROBERT S IGOE AND Y. H. HUI - excellent reference book to have if you come across those strange sounding ingredients that you have read and no clue what they could be!!!! I purchased at a local Barnes & Noble - I think it had to be special ordered. Sorry, I can't remember the price.

__________________

Sharon C.

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By davesmom615 on Mon, 04-28-03, 23:43

re-raising

Love this site
Synthia

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By jaleonar63 on Tue, 04-29-03, 15:41

Epi Pen Jr is perfect for the little ones!

I have 4 of them for my daughter! She's 21 months, and 25 lbs!

Kris

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By jaleonar63 on Tue, 04-29-03, 15:43

Epi Pen Jr is perfect for the little ones!

I have 4 of them for my daughter! She's 21 months, and 25 lbs!

Kris

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By Georgia Herrick on Thu, 05-01-03, 18:35

Even though I haven't read the entire thread, I think a good place for information is the Food Allergy & Anaphylaxis Network, [email]faan@foodallergy.org[/email]

Their information is straight forward, easy to understand & they offer a wealth of information on how to work w/PA; I suggest you learn this first; it also helps with the anxiety of acceptance of the allergy. Be very careful to not overload your psyche with too much other PA information; it can be hazardous when trying to simultaneously learn the basics of PA care. In other words, it has a tendency of making a PA parent behave & think irrationally which interferes with & prolongs the process of "acceptance", learning to work with the allergy properly & also with learning effective communication & business skills to be used w/the general public & with school administators.

Many PA parents have created "fears" for themselves &/or bestowed upon themselves the right to behave in an uncivil manner w/others by misinterpreting the intended purpose of information such as cross contamination, accommodations, etc. In most cases, it appears to have caused many to start/or have "unwarranted battles" with family, friends, school administrators & other institutions that could have easily been worked through.This type of irrational behavior/fear has caused many parents including their child a great disservice in many respects.

FAAN is the leader in educating the public, their guidelines are used in many schools and by parents of the food allergic; strive toward consistency w/their guidelines.

I say this only because you are new to this allergy, too much information & misguidance can cause a whole world of unnecessary problems, if you allow it to.

My daughter is now 9 years old, and has been reaction free for 7 years. This how we have achieved this:
A.) Acceptance of the allergy & in the change of our lifestyle
B.) Understanding that the allergy belongs to my daughter & that "we" (the parents) are responsible for managing its care (not other people, they can be asked to help), therefore we continually work w/the school & the public to educate them on PA
C.) Following "strict avoidance" rules (simple removal, her or PB)
D.) Involving her only in activities where reasonable accommodations can be made.
E.) Consistency

These are the basic rules we follow, and I hope that they will be helpful to you.

Good luck & stay safe!

Yes, get a few Epi-pens!

[This message has been edited by LisaMcDowell (edited May 02, 2003).]

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By Mommy b on Thu, 05-01-03, 19:13

My daughter started out the same way. Her first exposure was diarreha. Her second exposer was full body hives that took 3 days of steroids and benadryl to get rid of.

Find a new allergist. The one I originally went to said PA was no big deal and didn't prescribe an Epi Jr either. Found another who took the time to talk to me about the allergy.

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