when does the fear ease up?

Posted on: Thu, 05/15/2003 - 10:20am
anonymous's picture
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Joined: 05/28/2009 - 16:42

Hi everyone,
ok...so I have had 2 months so far to deal with my sons PA diagnosis, thought I was right on track with acceptance, learning all I could, being careful as could be and telling myself "everything will be ok". Truth is, I'm a bag of nerves. I need advice bad....My 21 month old has learned that certain behaviors gain more attention .... anyhow, lately he's been playing up coughing and of course when he see's the terror on my face, he goes with it. The problem is that I dont know if he's doing it because of my reaction or if indeed it is a reaction, that I should be doing something about....so I watch and panic. I am so careful about what goes in his mouth re: PA, but I know we will have accidents along the way....and it terrifies me when he does this....I know the logical thing is to ignore the behavior...but it's still so terrifying to me..... I think, what if this is a reaction and I'm sitting here doing nothing. He sometimes even sticks his fingers down his throat, and gags himself, while I imagine the worst (like what if his throat is itching, or swelling) I will be so glad when he can tell me if he feels funny. God, I feel like I'm going insane sometimes. Are there always other symptoms with a reaction....for example...would he always get hives along with other symptoms...would I be safe to assume, if there are no hives, then it is just an attention grabber, not a reaction etc....Children are so smart, it amazes me how they learn to "read" us. I dont understand it, I am a SAHM, he and I spend all our time together, doing interactive things....but yet he still does this weird attention getting behavior, who knows ...maybe he gets kicks out of how worried I get.....the little darlin' is going to have me grey and wrinkled well before my time. Have any other PA parents faced similar behavior. Sorry, so long....I need to write...this is therapy.
Thanks,
Lisa

Posted on: Thu, 05/15/2003 - 10:47am
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Joined: 05/28/2009 - 16:42

Toddlers are so perceptive, aren't they!! My Carson is 27 months old and he loves to get a reaction out of me. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] I have learned that staying totally calm, controlled and as normal as can be, even if you just think your child is having some type of reaction, is vital. The second they see the fear in your eyes they sense that you don't have control over the situation.
I understand your fear and it's totally normal to feel this way. I am just now to the point where I don't obsesses over it. Doing the "safe thing" is so second nature now that I don't even think about it sometimes. I have found my comfort zone and I am really at peace with Carson's PA and I feel like we control it, but it doesn't control us. You will get to the point where you find your comfort level and that will bring you a sense of much needed peace. I think everyone on this board has been where you are at one time or another, so just know we all understand and you are not alone.
Take Care,
Amy

Posted on: Thu, 05/15/2003 - 1:41pm
Driving Me Nutty's picture
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Joined: 05/01/2003 - 09:00

Lisa,
I completely understand where you are coming from. My 22 mo old dd was diagnosed as a 5 on a RAST test about a month ago. I feel obsessed sometimes trying to find out all the information I can on the subject. Also, she went through the stage of gagging and coughing for attention. Luckily it was before I knew about her PA. It passes, if, like Amy wrote, you stay calm and don

Posted on: Thu, 05/15/2003 - 5:19pm
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Joined: 05/11/2003 - 09:00

I'm still waiting for the information to hit my brain, let alone the fear easing up! We've known officially about our son's PA since August 29 of last year, but since my daughter was born on August 26 of last year, I wasn't exactly in the state of mind to deal with anything! I didn't go to the appointment with the pediatrician, and we didn't really get any "counselling" or advice - just "keep him away from peanuts, and carry an epi-pen." Nothing that really made it hit home. So I'm still floundering, and I know that our "comfort zone" has been way too lax because of that. Add to the birth of the baby two moves (one international!) and you (or I at least) can see why we haven't really had time to "grieve" or deal with the long-term effects his PA will have on our family life. And I think that's why it's only hitting me now - I haven't had time to dwell on it.
Now that it's becoming real, I try so hard not to worry myself sick about it, but every time I read the PA Book of Answers, I almost panic. The worst thing is, even though my husband is a wonderful, involved parent, he's a graduate student, and very busy, and has read a grand total of two pages of the book. TWO PAGES! This is the guy who devours research papers at lightening pace. He can't read something so important? Arrgh! So I feel like I'm trying to convince him all the time that this truly is serious, that my fears have grounding, and that Wade just isn't allowed to have "May Contain" foods. I feel like The Crazy, Neurotic, Over-reacting, Over-protective Mother, even within my own home! This all can be so overwhelming.
When I'm not worrying about my son, I'm still worrying about my son - like, am I actually ever going to be able to finish my degree? Or am I going to have to home school because I don't trust anyone else to take care of him? Is my life going to be Filled with the Fear of Peanuts? Sometimes I get so mad about it!
Just reading and writing this is enough to make me want to bawl. Boo hoo!
Sheesh - I REALLY have some issues!

Posted on: Thu, 05/15/2003 - 11:01pm
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Joined: 05/28/2009 - 16:42

Hi Pamela!
We found out Carson was PA about 10 months ago. I immediately found this board, absorbed all the information I could find and passed everything I found on to all of our family members. Like I said in my previous post, I was totally obsessed in the beginning(which is totally normal). I thought about Carson's PA CONSTANTLY, day and night~it totally consumed me. One day I realized that my job as Carson's mother is to be his rock in this situation and it's also my job to help him live as normal a life as possible~after all he deserves that! I was also certain that if I continued to be obsessive over his PA, I would eventually turn him into a little worry wart and I wasn't gonna have that. I had a nice talk with God and turned all my worries over to Him. I have done my research, I have a HUGE list of places that are safe and I always carry 2 epipens and a bottle of benadryl EVERYWHERE I go in my purse. Plus, I always check this board for PA updates. I am just as prepared as I would be if I were still totally obsessed over it, but I also have a few extras to bring to the table....JOY, PEACE and UNDERSTANDING. I know that God will never give me more than He knows I can handle.
My goal is for Carson to live a normal life like every other child. I am going to educate him about his PA and teach him to live in this world that is full of peanuts. Unfortunately it doesn't look like peanuts are going anywhere, so I have to teach him to live his life despite them. After all if I lock him up in our home and don't let him out into the world how is he going to survive after I am gone? My goal is to impower him with the tools to survive and for him to live a happy life full of joy and hope for the future. I wish you all the best, if you ever need anything please let me know. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
Take Care,
Amy

Posted on: Fri, 05/16/2003 - 1:44am
river's picture
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Joined: 07/15/1999 - 09:00

Lisa, you are having a very normal reaction.
It can be so overwhelming at the beginning.
It's like suddenly being thrown into a whole new world, where you're not sure if anything is what it seems. Slowly you'll learn your way around and also how to deal with the uncertain. Right now, you don't know who or what to trust. Sometimes you may not even feel like you trust yourself. It is a difficult situation to be in at any time, but when you also have a baby to protect and maternal hormones coursing through your veins, it becomes even more intense.
Take some deep breaths and think about all the things you are sure of. For instance you are sure that your son is putting you through the ringer for personal entertainment. Maybe try writing him a letter, telling him exactly what he his doing to you. You can even save the letter and use it when his is grown up as guilt-trip-ammo. [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]
Also, if you have someone you trust to babysit, take some time to be by yourself. You may need a little distance. Even a couple of hours at the mall can do it.
And you're right, coming here and letting loose can be therapeutic too.
Because peanut allergy is so unpredictable and because the symptoms of a reaction vary within the same individual, none of us can be sure about what the next reaction may be like. You can't know if hives are always going to tip you off. None of us can know. But what you'll will learn is to be attentive to potential signs, without feeling panic or overwhelmed. It does take time though, so make sure you're not too hard on yourself.
You'll also eventually be able to rely on your son to tell you if something wrong, (given that he grows out of this little sadistic phase.)
This is just one of those things like child birth---you get through it anyway you can; and it's not fun but in the end it's worth it. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Posted on: Fri, 05/16/2003 - 2:19am
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Joined: 05/28/2009 - 16:42

Thank you so much everyone, it's nice to know that I'm not certifiable afterall. Logan is my first and will be my only child, it took a lot of hard work to get him, I love him more than life itself and I worry about him...I cant help it. He has given us our fair share of worry/stress....in the beginning colic, then starting at 6 months the breath holding episodes (in which he passes out everytime) then the PA...but then again, he is a happy, healthy, beautiful and a bright little angel ( i often wonder where he is hiding his wings) It's so over whelming, this love we have as parents; and I guess when anything poses a threat to our child, we go on the defensive....it's just so hard to find the balance of when it's ok to let the fear go away a bit. I'm just glad it's normal and I'm not alone....thank you all for making me feel that it's going to be ok. I too am PA obsessed, because I think knowledge is power, therefore I read everything I can get my hands on...it helps, but it also causes worry to....I think I just need a little more time to make all the pieces fit. I have another strange question for you all....Did any of you go through a stage that you felt like maybe you did something wrong in your life and that thing they call "karma" was coming back your way. Let me explain.....I only ever knew 1 person growing up who was PA...and it certainly wasn't the issue it was now (in the understanding dept) I was in grade 7 and was amoung some of the ones who treated her a little differently...but not on purpose, or in a mean way....just kids being kids. Anyhow, she passed away in grade 9 from eating a piece of fudge that had peanuts in it....we were all so devastated....now, I think this may be my punishment for not being more understanding of her PA....crazy?...yes, but it makes you wonder. I guess, you just look for reason why your child has this very real and scary thing. anyway...thanks again for letting me get this out, I apoligize that I am sorting this out here....outloud....wow, real good therapy.

Posted on: Fri, 05/16/2003 - 9:17am
river's picture
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Joined: 07/15/1999 - 09:00

Lisa, we all do things in this life that we regret. We can't go back and change them but we can make improvements to the present and in that way improve the future too. By doing this perhaps in some strange way we do change the past.
You're wrong to feel guilty about that girl but I know that you knowing that won't necessarily change your feelings. Everything in this life is a learning experience to try to make us better people. You're presented with a bigger challenge than most of us having known someone who died from a peanut allergy. Also having this happen at a time in your life when events get impressed upon a young soul.
If it helps, don't think of this as punishment but think of this as a second chance to make things right, (despite the fact that you didn't do anything wrong.)
I hope I made some sense.

Posted on: Fri, 05/16/2003 - 4:46pm
Ms.Belinda's picture
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Joined: 05/11/2003 - 09:00

I think that because you've already known someone who died from a reaction, you've been better prepared to deal with the severity of your son's PA. Maybe you should see that experience as a blessing instead of something to be ashamed of - her life touched yours in a way that has affected it always, and her experience can help you to be a better protector of your child.

Posted on: Tue, 05/20/2003 - 12:38am
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Joined: 12/06/2002 - 09:00

Hi Logan's Mom,
It eased up for me when I gained self confidence that I could care for my dd & her PA properly.
Also because your son is only 21 months old, you have control over his environment & what he puts into his mouth. Continue to read labels & know that you are doing your best.
My 22 month old gd has MA & obviously learned that the choking coughing thing w/her parents would gain her immediate attention which she loves, however she learned that from me & her grandfather that we'd either play along w/her or calmly shove our fingers in her mouth! Kids always know how to pull their parent's strings, not so much w/NaNa & PaPa! (Being a grandparent is so much more fun!)
Read on:
Hi Carson's Mom,
I'm glad you had that chat w/God...I found that once I turned it over to God I was overwhelmed w/a sense of relief! In the process of doing so I also vented my anger at God for giving my dd PA, however I learned that it was not God I was angry with, I was simply "afraid" that I wouldn't be able to care for it properly because I couldn't forgive myself for having caused my dd's two reactions. The first by feeding her a nutter butter cookie & the second by not asking the neighbor if her twins father had been sent home w/any snacks in their backpacks.
Anyway, FAAN's guidelines have worked very well for us by keeping it simple by not reading more into them especially w/the topic of cross contamination. My dd is now 9, & has been reaction free 7 years.
Its a process that PA parents go through & that's okay. You can do it, & the more determined you are the sooner you'll get there! Be that "rock" for your child!
Good luck!
[This message has been edited by LisaMcDowell (edited May 20, 2003).]

Posted on: Tue, 05/20/2003 - 5:05am
Driving Me Nutty's picture
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Joined: 05/01/2003 - 09:00

Thanks Amy & Lisa for your comments. I've been dealing with accepting my toddler's PA better. Over the wkend I started reading 'Caring for your child with Severe Food Allergies' by Lisa Cipriano-Collins. It is completely different from the PA Answer book. Her book is more about dealing with the emotional side of it. I was hooked from the first chapter when she wrote about how she decided that SHE was going to control the PA and not let the PA control hers and her child's life. I'd definitely recommend the book for anyone new to the diagnosis.
Thanks and Good luck!

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