New to PA and very, very scared

Posted on: Mon, 07/14/2003 - 10:14am
amymastro's picture
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Joined: 07/14/2003 - 09:00

Hello, I am new to the PA world and have been doing loads of research and recently stumbled upon this site which I think and hope will help get me through this very difficult time.
Let's see where do I start?!?! I have a 19 month old daughter and a 4 month old daughter. Friday night while we were at a birthday party my 19 month old was exposed to peanuts. My husband saw her touching them (no one ever saw her ingest one) and I had been strictly avoiding them until she was 2. Later that evening she starting coughing, having trouble breathing, her eye swelled shut and she was completely covered in hives. We rushed her to the ER where they administered epinephrine and gave her oxygen to bring her back to normal levels. I'm sure I don't have to tell any of you just how scary this was and how absolutely helpless I feel right now. The dr. in the ER thought, because of the severity of the attack, that she must have ingested something to cause this reaction. However, after scouring the internet it appears that perhaps just touching the peanuts may have been enough. Does anyone know if this is true?
Also, the next step is to see an allergist. I called Children's Hospital in Boston, as I am from Mass, and the first appointment isn't until the end of October. I was told that I would meet with a fellow. When I asked if I could choose a specific Dr. (Dr. Young - the author of The Peanut Allergy Answer Book) they said I would have to wait until January. Second question - is it worth waiting for this doctor? What will they do at this exam? Can I trust the results on such a young child? Do I demand to see a Dr. or is a fellow adequate?
Also I've read that there may be a link between PA and babies who were fed soy formula. My 19 month old has a dairy allergy so was put on a soy formula. When my 4 month old was born the pediatrician told us to just put her on soy as well just in case. Am I doing her an injustice? Is there a possiblitly I could cause her to have a PA because I'm feeding her soy?
I'm sorry this message is so long. My head is spinning and I am feeling so alone and so overwhelmed. Now that I don't feel like I have any tears left to cry I have a million questions to ask and am just so thankful to have found this site. Any advice, answers, or encouraging words would be greatly appreciated. Thank you!
Amy
Proud mommy of Elizabeth and Abby

Posted on: Mon, 07/14/2003 - 11:41am
Danielle's picture
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Joined: 04/08/2003 - 09:00

Hi Amy
Welcome. I also have 2 little girls ages 2 1/2 and 7 months. My oldest daughter has PA and it has definitely changed our lives. I rushed her to the hospital a few days before her 2nd birthday. I finally feel as though I am getting a handle on the whole PA "thing". It is just so darn overwhelming but it does get better. I won't say that I never cry but my anxiety attacks have gotten better and we now have our safe food all in place.
Youv ask a lot of great questions that I wish I had time to respond to but we are still in the middle of moving into a new house so I must run. I just wanted you to know that these boards will always offer you support, guidance and a shoulder to cry and yes sometimes laugh on.
Please make sure you carry at least 2 epi pens with you at all times.
Stay safe and do lots of searches for all questions that you may have.

Posted on: Mon, 07/14/2003 - 12:18pm
LaurensMom's picture
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Joined: 05/23/2001 - 09:00

Hi Amy,
I'm Andrea. Welcome.
Your situation sounds very similar to what happened with our daughter Lauren. The emotions you are going through are also very familiar.
The tears you have will come and go, I believe. There will be days where you think you can handle it and you think you have it all under control. Then there will be the days where you just cannot cope with it all. There were days I remember describing to my DH that I felt as if I were alone on a raft in the middle of the ocean. I honestly feel your pain as we too have felt it and felt just as alone.
But know there can be a bright side. Know that although things will never be easy, things will get easier. How do you get there? It is different for everyone. I found what helped me when I felt the most alone and the most scared was (on the advice I got from someone else) to read, read, and read more. The book you mention is wonderful and another wealth of info is FAN's School Food Allergy Program, even if your child is too young for school. Both books put down in black-and-white what you need your immediate support network (your family) to understand. I also found that all this research helped me to educate others, which I do non-stop. It made feel like I was in control of it instead of 'it' in control of us.
Am I still scared? Well...yes and no. I mean, we've found products we live by. We've found companies we live by. As a result, we've drawn this imaginary circle around Lauren...that is...we've defined her environment. She is going into 2nd grade in Sept. First grade went wonderfully although it was terrifying to get her there. However, it couldn't have been better. But then those last few weeks of school were very stressful because I knew her enviroment was to be changing again soon. We went to work setting up the classroom for next year and addressing her 504. When we saw how well prepared the school was and we were, we calmed down and are feeling much better about it now.
I could go on with other tips that helped me but I am concerned I may be overwhelming you. I don't mean to and apologize. Your situation just really struck a chord with me and wanted to try to help you feel better.
Hope this helped.
Andrea
PS: You mentioned you are from MA. North or south of Boston? We could be neighbors.
[This message has been edited by LaurensMom (edited July 14, 2003).]

Posted on: Mon, 07/14/2003 - 2:07pm
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Joined: 10/27/2003 - 09:00

I am a few months into PA and it is scary but I think it gets better with the more education you have. This is a wonderful resource and you can learn so much from the folks here.
As for waiting for the allergist of your choice- I would play the health care game. Make the appointment with the one you reallly want, and in the meantime, find another MD to see you, test, prescribe epipens, etc. I have done that several times. That way you would have some care until January or whenever, but could get the records transferred for the appointment with the "big guns." If I had the opportunity, I'd see the expert.
Hope this helps!
paula

Posted on: Mon, 07/14/2003 - 9:36pm
Riley's picture
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Joined: 07/13/2003 - 09:00

Hi Amy,
I'm also new to the pa world Everynight when my kids go to bed I get on the internet and research. I also talk to people who have kids with this allergy. I've learned alot a few days!! The anxiety does get better. I also am from MA, North of Boston. I too wanted to see Dr. Young. But, I couldn't wait. So, I saw a wonderful allergist - Dr. Joel Bleier in Medford. He and his staff were great with my son!! I hope this helps!!
[This message has been edited by Riley (edited July 15, 2003).]

Posted on: Mon, 07/14/2003 - 9:47pm
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Joined: 04/19/2000 - 09:00

HI Amy,
We have been dealing with PA since my son was 10 months old. He is now 17 years old and doing great. He has turned into a very nice young man. It has been very tough for us over the years,but not enough to not let us enjoy life and him. We almost lost him a couple of times,but managed somehow to overcome and keep going. It gets very hard for us moms and dads at times,but the key is to keep as much of your stress away from the kids and let them live as every other child lives happily. Just try and remember we could have been dealt something really bad like a life threatening illness such as Cancer and that would not be as easy to deal with. I just thank god that if i had to have something to deal with I am glad it is just PA and nothing else.
Chris has many wonderful friends and I have an excellent family that understands. I could go on all night but i just want to let you know that you will be ok in the long run of this. It doesn't get easier at 17 believe me lately there have been more issues to deal with than ever but we manage. If you have any questions for me I would love to tell you how we handled things. just ask. Good luck Claire

Posted on: Tue, 07/15/2003 - 9:34am
amymastro's picture
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Joined: 07/14/2003 - 09:00

Wow, thanks to all of you who have responded. I can't help but think how lucky I am to have found this site. Your outpouring of support is worth more than words can express. It's so nice to know that there are other people out there feeling the same way I do and knowing that I don't have to go through this alone. After reading all of your responses I honestly feel more empowered and feel like "yes, I can get us through this and not lose my mind in the process!" I carry the epipens and benadryl with me now. (actually today was my first trip out since the incident and I kept checking for them in my purse as if they were going to fall through some hole that didn't exist!)
I have ordered a bunch of books and after I read them I plan on giving them to my family to read so they can educate themselves on this as well. I am going to use knowledge as my weapon to fight this battle.
Andrea, you are absolutely correct in saying that reading will be helpful. The more I learn the better equipped I feel to tackle this. That is so funny that you said that about the raft in the ocean! I, too, said that exact same thing to my husband. But now it's like all of you are these sailboats coming to let me sail with you. My cruise ship is this vaccine I've heard all about that may be available in the next few years. By the way, I am from North Andover. Where are you from?
Claire you have inspired me because of your positive attitude and the fact that you have dealt with this for so long. Believe me, I thank God every day that the worst thing we have to deal with is allergies. I can't imagine what I would do if I had to watch my children suffer on a daily basis. I want to learn from you how you were able to keep your stress away from Chris and how you enabled him to live as normal a life as possible. I'd love for Elizabeth to experience that but am just not quite sure how I'm going to do it at this point.
Now, just to get me learning the lingo - what does DH and DD mean? I'm guessing the H is for husband and the D is for daughter and I'll probably feel really stupid when you tell me but I've been racking my brain on this one! (all I could come up with is "diagnosed".
Thank you all again for your kind words and support. I can't begin to tell you how much better I feel already. I really appreciate you taking the time to respond. I look forward to coming here to discuss issues, ask questions and cry on someone's shoulder who actually understands.
Amy

Posted on: Tue, 07/15/2003 - 9:46am
Peg541's picture
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Joined: 12/29/2002 - 09:00

Amy, let me echo Claire. Our son is 18 and has been PA forever. We found out about it at age 4. Yes it is scary but it also makes us so darn strong as a family. Together, smart and strong.
Please ask anything. Use my email address if you would like.
My son is going off to college and I'll be experiencing an empty nest for the first time. That scares me too.
Peg

Posted on: Wed, 07/16/2003 - 7:43am
Chicago's picture
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Joined: 04/21/2001 - 09:00

Amy
Welcome! DH is "dear husband". So, DS (dear son), DD (dear daughter) DMIL (dear mother in law)etc....
On this site you will also oftern see TNA for tree nut allergic or PB for peanut butter.
My dd is almost 9, PA and TNA. While it ever challenging, I think that you will learn how to manage it with the help of the available resources out there! W/o the internet I would find it alot harder to manage - not just for information from sites like this, but the ablity to order safe chocolate treats and contact companies easily.

Posted on: Thu, 08/21/2003 - 10:16pm
goober_hater's picture
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Joined: 08/21/2003 - 09:00

hello amy,
yes, i can understand how you feel. i had almost the same reaction last easter and i had to be taken to the e.r too. and i have also heard about feeding soy at a young age- we think thats how i got my allergy. it could be really helpful to go to [url="http://www.epipen.com"]www.epipen.com[/url] and request a info package about severe allergies.
about the exam-
when you go to the allergist, you should expect to be there for a couple of hours [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img] the allergist will probably ask you all that happened during the first reaction, what was used to treat it,symptoms, ect. and this is the time where you should ask all of the questions you've been dying to ask! it could be helpful to write those down on paper and bring them to the exam so you dont forget them. hope this helps! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
by the way- you're not alone! so many people are in your same boat- i was once too! and you've been doing a great job so far, especially since you're new to the PA world. so i would just say- keep going strong and soon you'll be a pro!

Posted on: Fri, 08/29/2003 - 7:55am
abbylukesmom's picture
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Joined: 08/28/2003 - 09:00

Amy,
I can certainly empathize with you on taking out your kids the first time after such a nightmare! My 2 year old son had two awful seizures where his heart actually stopped beating & he was blue all over. Sooooo scary!! (Dr's say no, but I say it was PA)After we were home a few days from the hospital, my 5 year old daughter wanted to go to McDonald's. So, of course, I nervously took them. I cried as I sat there & watched them play! It was such a privelege being able to be there with my little ones! God has blessed my family!!!!!

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