Has anyone almost lost a child because of PA??

Posted on: Thu, 05/10/2001 - 5:22am
Claire's picture
Joined: 04/19/2000 - 09:00

pHi, the reason I have raised this issue is because I have wondered how many of you have heard these words. "We are doing our best to save your son believe me". I still have nightmares about the day they told me Christopher may not make it. It was in the first grade and he ate a snickers miniature bar. He was in church school and the teacher insisted it was safe. How would he know that she was wrong at 6 years old? I think about this day and he was so,so sick. The candy was in a christmas wrapper in which he had never seen before. As it was they gave him all sorts of medication and put me out of the room so they could fit all the doctors and machines they needed. i think this is what made me feel that I needed to educate people better than they were. I think this is the day I realized I needed to speak up to people and tell them what they needed to know. I am concerned as to what kind of reaction other moms have seen,and how you feel it has changed you into a better mom?? I really do feel it was something that made me Say"WOW I need to take control of this situation". Take care and I hope this is not a silly topic to bring up. I has taken me a long time to post however I have wondered for a while. claire/p

Posted on: Thu, 05/10/2001 - 2:12pm
Anonymous's picture
Anonymous (not verified)

Claire, first of all, I don't think this is a silly question at all. I believe if you don't get much response to it it's because if you have almost lost a child due to PA, it is such an emotional, painful thing.
I have posted about this particular incident on this board many times, if only so other parents will not have to re-live the horror I did that night. However, because you have asked a specific question and this certainly is a specific answer, I will write it out all again.
Yes, I almost lost my beautiful Jesse, at 3-1/4 years of age, on April 22, 1999 due to an anaphylactic reaction to a pb rice krispie square that just touched his lips. It did not enter his mouth. It did not have a bite mark in it.
Why did my child almost die? It was his second anaphylactic reaction. Even when he had his first anaphylactic reaction, I somehow knew, in my gut, that that was what was happening and I dealt with it quickly and calmly.
I knew the instinct the pb rice krispie square touched his lip that he was going into anaphylactic shock. I screamed NO! Heads turned. Husband was embarrassed.
My husband had not seen Jesse's first anaphylactic reaction and was still in denial about the potential severity of a reaction.
The guilt I will carry forever Claire is that I knew, it was my gut instinct again, that Jesse was going and that he needed his shot.
But rather than embarrass my husband by trying to make him "get it", I allowed myself to argue with the man. He vomited. Husband says "he ate too much candy". He started to cough violently. Husband says "he's been running around too much" (Jesse has exercise induced asthma). My husband was in denial and did not want to be embarrassed by my screaming in front of a group of people at a church gathering.
Our son went through every stage of anaphylaxis except going into a coma. Finally, I was able to convince DH that something was wrong, that he did need the Epi-pen shot. Jesse's poor wee body had turned completely red. His lips had become blue and swollen as soon as the pb rice krispie square touched his lips. His face, particularly his eyes, were horribly swollen.
We got Jesse into a room and administered the Epi-pen. Then, we were not educated enough and no one out of three prescribing doctors for the Epi-pen had ever told us that the shot only buys you twenty minutes to get to the hospital.
Twenty minutes later, Jesse started to go again. Did we call 911? NO! We left what I consider a remote place and drove him to the hospital, even stopping where we live to drop my husband and daughter off. WHAT?
It was not my husband that watched as six hospital personnel held my screaming son down on the table and tried to get an IV into him.
It was not him that prayed, as Jesse dozed off, that he would live.
Then, of course, I didn't know that a reaction could occur for up to eight hours later. Thankfully, the hospital I dealt with did. We were transferred to intensive care where we spent the night and were not able to be discharged until Jesse's family doctor had seen him.
After this incident, my husband was no longer in denial. But he had to witness the near death of his son to "get it". The guilt and shame I carry is that I did know what was happening and chose to argue with my DH instead of getting the Epi-pen out and jabbing it in my son's leg. The guilt and shame I also carry is that I was not educated enough about PA. Even though Jesse had already had one anaphylactic reaction, I did not know that you had to go to the hospital.
I am a woman that usually goes to the doctor with a written list of questions. Why did I never question any of the doctors or pharmacists re this? WHY?
Claire, that night will haunt me for the rest of my life. Jesse doesn't know that. He will never suspect it. He does remember little portions of the evening. He remembers the person who gave him the pb rice krispie square. Jesse will not know. My DH will not know. But Claire, I know. But in so knowing, I also do my darndest to make sure that I am fully educated about this and that I have enough sense about me to trust my gut instinct rather than argue with anyone who is in denial, even if that person happens to be my child's other parent.
This is why Claire I will constantly post this story on this board. I do not want ANY other child to suffer what my son did that night. I do not want any other parent to suffer what Jesse's Father and I did that night. If I can pass on only one thing, through my 3,000 or so posts, it would be this information. Trust your gut instinct.
Deal with the denial later. Save your child.
I know that some people will say that I should lose the guilt, but, it's only me that remembers making up the Thomas the Tank Engine story while Jesse was lying there and telling him that Sir Toppenhatt had asked that Jesse please come and paint all the bridges a new colour. He actually was awake enough at that point to choose the colour orange. It is only me that knows that Jesse painted orange bridges on the Island of Sodor that night, as I told my baby his favourite stories in the hopes that I would have many many more nights to tell him other variations of the Thomas stories.
The hospital also gave him a teddy bear. He still has it and although I was tempted to get rid of it because of the memory, I actually use it to explain to Jesse about his hospital stay and why he got the teddy bear.
We could have done without one though.
I'm sorry, Claire, I have to close now. I was SO happy recently to get the actual date of that reaction and to be able to say that we had reached our second anniversary reaction free. What an anniversary to celebrate. I didn't. But I do remember.
Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Posted on: Thu, 05/10/2001 - 8:14pm
Claire's picture
Joined: 04/19/2000 - 09:00

Cindy, Not that it really matters now,but I had some doubt one time as to weather I should bring Chris to the E.R. It was that I was so new to the whole P.A. thing and it was something that not many people could tell me about. I had no idea that the symptoms could be as serious as they can be. After this we had seen our allergist and he told us to always assume the worst thing and take him right to the E.R and they would watch him for a certain amout of time. I think the things we have been through has deffinetly been the reason for his having little trust in teachers and other peers. Someone once accused him of faking a reaction so I think that caused him the fear of going to school. Take care Claire

Posted on: Thu, 05/10/2001 - 11:56pm
Anonymous's picture
Anonymous (not verified)

Claire, I feel so sad that you learned the hard way too, but again, by posting it here, for everyone to see, although heartbreaking and emotionally wrenching to do, it may help one family not to experience what yours did.
I'm sorry to hear that Christopher has some difficulty trusting people because of this and also horrified that someone could accuse him of faking a reaction.
I realized after I ended my post last night that you had really asked the question as to whether or not because of the experience anyone felt that they were now a better Mom because of that terrible wake-up call. The answer for me is definitely, yes! I think first and foremost, the most important thing that happened that night was that my husband lost his denial. I had already tightened up my comfort zone to pretty well what it is to-day after Jesse's first anaphylactic reaction. But, I wasn't always clear that my husband understood why I was the way I was about it.
So, even though it had to take this experience (and that's why I do post that I believe a lot of people in denial need to see a reaction first hand before they get over their denial - I actually don't think my husband is unusual) for my husband to get over his denial, he has been the same comfort zone wise with me ever since and reads labels as well as I do. He carries an Epi-pen with him. I believe, if I truly wanted to ask him, that he will carry the guilt from that evening for the rest of his life also. If he carries it and it continues to make him aware and protect his son, I don't think that's bad.
Also, at the time this happened, Jesse was just over 3-1/4 years old. What we IMMEDIATELY did was teach Jesse that he had to ask anyone who should offer him food after that if it had peanuts in it and also that he was always to check with Daddy or Mommy. His Father had actually seen him take the pb rice krispie square from the fellow, but if Jesse had been taught to first say "Does this have peanuts in it", hopefully the person would have known and Jesse would not have accepted it in the first place. Also, it definitely taught my husband that he has to check the food immediately. He hadn't checked the square as soon as it was given to Jesse and that's why it got back to our table to begin with. As soon as he sat down beside me I could smell the pb and that's when I started screaming NO!
As I say, my current comfort zone was already in place when this incident happened. But, it did help my husband learn why I had the comfort zone I had which definitely lessened tension between us re PA. It also showed me that really as soon as our children can speak, they can learn to say "Does this have peanuts in it?" I remember MKRuby writing an article about this and how it was one of the first things her children learned how to say.
So, although Jesse didn't become responsible for his allergy after the last reaction, he did start to learn about his allergy. To-day, at just over 5, his not only learning, but beginning to accept responsibility for his allergy and also slowly becoming empowered.
It was still another year after the reaction before I got a computer and got on-line to the wealth of information we have on this website alone. I consider myself in a constant state of learning. It may not change my comfort zone, that has really remained the same, but I am still constantly learning. That's why I raise so many questions. I never want to make the same mistakes that I made that night.
I'm not clear if because I almost lost Jesse that night that it makes me more adamant about ensuring his safety at school or not.
I actually think, if this is even possible to say, that I am glad that he did have a severe reaction before he started school (although I would leave out the almost dying part). It reiterated for me, even though it was his second anaphylactic reaction, about how serious PA was and to what extents we may have to go to ensure the safety of our child at school. So yes, I guess it did factor into even his attendance at school.
I have read many other people posting here that have the same or similar comfort zones and have the same or similar school requirements without having gone through the hell that I did. But, I believe they are really well educated re PA. I wasn't. Then, even when I was (not to the extent that I am now, but I believe that simply comes from being on-line), I still let other things stop me from doing what I knew in my gut had to be done - administer the Epi-pen.
I do know that the reaction did change me. It did change my husband. Jesse, I believe, it became aware to us, his parents, that he needed to begin being educated and asking questions, at just over 3 years old. But now, I have a child that accepts his allergy (not that he doesn't get angry with things like the Nestle decision) and is just so cool about it. I understand that this may change due to how he feels about how other children treat him or exclude him, but right now, he seems to be in a really good place re his allergy. I'm not saying that I never would have taught him about his allergy if it hadn't been for that second reaction, but it just seemed to move us very quickly into doing all of the things that we possibly could at that time to get the ball rolling.
Because of his age, again, he simply started with "Does it have peanuts in it?". That's a good beginning. I know we would have reached that beginning regardless, but I'm not clear if it would have been so soon.
Claire, regardless of Christopher's mistrust of teachers, etc., in another thread just last night I have pointed out how I believe YOU have truly empowered your family. Perhaps it is because of the experience you had that you posted about above. But you have empowered not only your son but your husband, and yes, yourself. This is a wonderful thing, Claire.
Did we pay a heckuva price? Yes. But if we can re-tell our stories so that another family doesn't have to pay the same price, then so be it.
Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Posted on: Fri, 05/11/2001 - 5:08am
anonymous's picture
Joined: 05/28/2009 - 16:42

Wow! This is not a stupid question at all! My son just turned 3 last 2 weeks ago and although I take his peanut allergy seriously, I'm now realizing not seriously enough! Up till now, I've been more concerned with his milk and egg allergies. He always asks "That have milk in it mommy?" and as long as I say "no" he'll eat it. I now want to hear him say "that have peanut or milk mommy?" (sorry for the bad english, but that's how he says it [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] )
You have opened my eyes with this topic and I thank you for that. He'll be starting pre-school in the fall (if he ever goes on the potty) and it's really starting to sink in what can happen to him.
Thanks again!

Posted on: Fri, 05/11/2001 - 10:37am
Claire's picture
Joined: 04/19/2000 - 09:00

Markus mom, I just want to tell you that there are scarry moments and you will get through them. I found that one thing we found to ease our selves when Christopher started school and was accused of faking by an aid was this. We taught him that he should always tell someone that he thinks he got into nuts,and then run out of the class if they are not listening and dial 911. Once I knew he could dial this I knew he would be better off. I told him that with this allergy never let anyone stop you from getting to a hospital. I also explained you need to take the right steps just because I didn't want him to assume they would not listen. I wish I told him before the darn aid messed up things,but I think the best lessons are always learned the hard way. Christopher knowing he could call 911 became a bit more at ease. I even explained that I dear anyone to cause trouble for him leaving class without permission. The thing is I didn't want him to go running through halls having an attack and no teachers around him. tonight at a ball game my 3 year old had a fit because he thought there were peanuts near his big brother. They can learn very young so keep educating the little ones. Take care claire

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