I have learned from reading other's stories, so I am sharing ours. Please be kind if you post your opinion that I did something wrong....believe me, I have beat myself up enough and I am very sensitive right now but I know our story can help someone.
Yesterday, I made DD's favorite chicken sandwich on Joseph's pita bread...a new flavor made with oats and flax and yes, I did read the label but I did not read it with a fine tooth comb. Joseph's has been our go to pita bread since her sesame diagnosis as they told me at the time the only time they use sesame is to make special chips for the Jewish Holiday of Passover and that they really cleaned their machines after but could not guarantee a seed might not get stuck. We just don't buy pita bread around Passover and the school uses it for DD's pizzas on pizza day.
Right after eating, DD came to me and said...."Mom my mouth is really itchy and the bread has sesame flour in it". I don't feel like I am having a reaction, just itchy. 4 teaspoons of Benadryl and I grab the bread bag. Sure enough – oat flour, whole wheat flour, soy flour, soy oil, sesame flour......right there....on the label. Sesame flour? How much? It's the last flour listed....even after the oil....maybe not much.....
DD says she's fine. She went off and made her bed and did a few more things. Then she came down and said her stomach hurt like when she's had egg. We both know that means she will throw up. After a short time, she did – purged it all. I didn't like her look but she insisted she felt better. I did not want her to leave the bathroom so we made a comfy spot for her to rest. I had an EPI in my pocket and the phone at my side.
Her asthma was fine, no chest pain or discomfort. She was quiet, tired and looked like she might nap.
Then she started to do something weird with her mouth. So I asked her what was up and she said there was some weird stuff in her mouth. I asked her if it was like mucus and she said yes. It told her it was time to use her EPI pen. She insisted not, I insisted yes! I asked her if she wanted to inject it or me, she said me and started crying and covering her leg. I told her she had a couple seconds to get the message that she was getting the shot, that it would hurt and that she would feel better. Then into her thigh it went and I counted – out loud, strong voice, very slow while she kept saying, "it didn't hurt!". I took the EPI out, called 911. She was jittery but feeling better.
The ambulance ride went well; we knew the paramedic and that really helped. She was stable and did not need another EPI. She was on oxygen. All her vitals were stable.
After getting into her room in the ER, they gave her an IV, something for her stomach, prednisone and more Benadryl. Then things started to change. The worst of her reaction happened at the hospital. She had hives, some bigger than a softball, the asthma cough and pressure in her chest, and a general horrible feeling. She even had hives on her scalp past her hairline. The doctor and nurses were not alarmed. They just kept telling me the medicine would kick in, that her EPI had worn off but they did not think at that time she needed more with what they gave her. After the nebulizer, DD relaxed and said she felt so much better. A short time later, the hives slowly started to resolve and she wasn't grabbing herself to scratch and she turned for the better.
An hour and a half later we were home. She is doing great. She will use her inhaler 4 times a day for the next 2 days. She will be on Benadryl and Prednisone for the next 5 days and no physical activity for a week. But she is home, smiling, eating, and carrying on in her typical teenage way.
Every label, every time....trust your instincts, you know......the EPI Pen doesn't really hurt.......
Oh my. I'm so sorry that happened. I am so glad your DD is ok. :grouphug:
:grouphug: I'm sorry she had a reaction. I know you feel guilty, but none of us are perfect. You gave her the Epi and handled it and she is ok!
That reinforces for me that it is necessary to do the ambulance & ER every time we've had to. Sometimes I feel like we've gotten to know the ER a little too well like I might as well get a prepaid multi-pass punchcard.
Glad to hear it you're both back at home.
purplecat, I'm glad she OK.
I will admit that while reading your post, a part of me was thinking "use the epi...use the epi". BUT, when I saw your daughter is a teen, I actually do think listening to her was really important. Eventually you did have to over-rule her, but it was still REALLY important to listen to her.
I'm sure you are kicking yourself, but please remember, MC recently did the exact same thing. Ate a product that DID list her allergen. It can happen to anyone.
Oh goodness yes i did. And sesame,too.
The difference-- when my symptoms started returning, the ER gave me Epi again. It's SOP. And I think the correct thing. I noticed right away. Nipped that biphasic baby in the bud.
So It has shaped what I tell DS for a rxn.
Glad she is okay!
Did they mention Zantac during the next few days?
Fwiw I think sesame flour is very potent, based on experience.
My only other bad sesame reaction wit eating pretzels made with sesame flour. I had an alcoholic drink at the same time, though. But it had these large raised welts al over my shoulders and chest. I looked like a relief map. The welts were the continents on it, lol.
Glad you posted.
PurpleCat, please don't beat yourself up, we all make mistakes. I think you did really great giving the epi and calling 911. The important thing is that she's o.k. :grouphug: to you and your dd.
Thanks for sharing your story.
BIG {HUGS}
You did good. As the others have already said-- you missed ONE word on a tiny label-- it happens. It's GOING to happen to your DD again when she's doing all of her own label reading.
Now she knows how much epinephrine helps. Honestly-- that may ultimately be worth ALL of this. :grouphug:
I'm glad that she is okay now. I hope that you can both get some rest today. :heart:
It seems like the hospital did some things that I find curious though-- they didn't offer additional epinephrine upon biphasic symptoms (but maybe they already had an IV line established?) and they also really didn't keep her very long.
Supposedly best practices are 4 hours from the COMPLETE resolution of symptoms. But I'm also here to tell ya that 4 is a minimum-- we've seen biphasic reactions as far out as 5-7 hours.
Thank you! All. For your kind words and support.
CMdeux, Well, I just filed all the papers from the hospital and on one it says they did give her epinephrine....or did that mean the shot I gave her? I'm not sure...but I did not see them do it. Yes, she had an iv line and a bag with saline that was started on the ambulance and changed when we got to the ER. Maybe when they changed the bag. We were only at the hospital for 3 hours. I'm glad nothing happened after we got home. The doctor seemed very confident that we were out of the woods.
Macabre, they did not mention Zantac. I have to call the pediatrician and the allergist on Monday morning. I'll confirm with them if we should do anything else. What would the Zantac do that the other two meds don't do? Your description of your skin sounds just like DD's except it was everywhere! She and I could not believe the size of some of them. I told her she was lucky her nose did not get a super big one! Your description of a relief map I shared with DD and it made her laugh! That really explains it!
SilverLining, thank you....your post is what I most needed to hear today. She is 13 and often becoming more responsible for herself. She goes to Washington DC this May with her class. It's far away and I won't be there. I felt like she needed some control and to help make the decision. After, she and I talked about what happened and what she should do when I am not there to guide her. And now she knows, the epi doesn't hurt...it makes a difference.....and how much she needs help right away.
Her friends have been calling today (all it took was one of them seeing the police, fire, and ambulance at our house and word spread) and a few mom's have emailed me to find out what the "bad" food was so they can update their lists of safe foods.
PurpleCat,
I hope you're DD is better today. That's scary. We've missed peanut oil as an ingredient. I think we've all been there at some point.
As for your DD in DC, I live about 30 miles west. PM me if you want my contact info. That way you and your DD can have a local contact if need be.
I think you did really well, PC. Missing things on the label happens to all of us.
I'm so glad your DD is doing okay now.
I really need to have my two teens to read your original post.
PC Zantac is an H2 blocker and Benadryl is an H1, so it blocks different histamine receptors than Benadryl.
Nice benefit: no drowsiness.
I keep the store brand around for reflux, but when I've had reactions (years ago and December) I was told by a doc to take it. It's something to explore with your doc.
So glad you're DD is doing better! :grouphug:
Last time DD was in the ER for a reaction (7 years ago) they gave her IV Pepcid (also an H2 blocker) as part of the treatment. When she went biphasic, they did gave her more epi.
I am so happy to hear your Daughter is okay. We are all human and this can happen no matter how cautious we are.
HUGS to both of you!
Ugh! My stomach is in a knot just reading this. Brings back a flood of memories. One thing that stands out for me is that she was able to communicate with you. That's one silver lining as they get older I guess. Not so much guessing.
You both did great. Take care of each other. The stress of these can really linger :heart:
So glad she is ok, Purplecat!
Glad to hear that she is doing well and hoping that she is not having too much post reaction yuckiness. With my last anaphylaxis it was all benadryl all the time for a few days afterward - anytime it started to wear off, hives would start to pop up.
My doctor generally recommends an H2 blocker after anaphylaxis - I'm already taking double dosages of one, so I can't say if it made a difference for me.
DD went to school today. The school nurse checked on her in the morning around 9:30, then DD saw her at 11 for her inhaler, and then she check with DD again after lunch - emailed me each time to let me know she was doing fine!
DD will see the allergist tomorrow morning. The allergist does not want to change anything without seeing her especially since so far all has been quiet.
Her skin has cleared up! There is hardly a mark! I'm assuming that is the prednisone working away. It makes her face look sunburned.
What makes me most happy right now is DD did not hesitate to start eating again. We did decide she should bring a lunch to school all this week just to be extra sure while her body is healing....she can go back to buying next week.
She is going to watch her dance classes this week but not dance - no physical activity this week.
I am amazed how she is handling this. She is not hesitating to get back to normal. She does not seem scared by it. She really is growing up!
The boys are also doing ok. The youngest is just 9 and he told me this morning that it was a very scary weekend and how glad he is his sister is ok!
Now....to get my own stress in check! I can't seem to settle yet so my evenings after the kids go to bed are filled with anxiety that includes chest symptoms that logically I know are not dangerous...but.....
MandCmama, that is huge for me. Yes, she can talk to me and really explain what is going on. It was so much harder when she was younger and I was guessing. Even with her asthma. It makes a big difference.
So glad to hear she's doing better.
Take care of yourself, too! :heart:
How scary. One of my worst nightmares. :grouphug: :grouphug: :grouphug:
I'm sorry that happened. Good job giving the epi!
I was going to say the same things CM said. Many ERs do not give the epi when they should and instead give steroids (which have not been proven 100% to do anything for an allergic reaction last I read--they are only THOUGHT very likely to help.) I would talk about this with your allergist and consider writing a letter to the ER about it. They should have given the epi with the return of the symptoms you described. It is not unusual to need 2 or even more epis. Also, as CM said, they did not keep you there long enough. 4+hours is standard after symptoms resolve. I have had ERs want us to leave much sooner. Once we moved DS to a gurney in a hallway just to stay there that long. I felt silly because he seemed fine but I know that biphasic reactions can and do happen.
I'm so glad she is OK. You did great to give the epi over her objections! Very good!
Glad to hear that she's bouncing right back without a lot of PTSD symptoms or anything.
Now Mom just needs to do something nice for herself to let go of some of that jittery, horrible after-reaction stress. :heart:
Oh my, I'm in tears reading your post. So glad she's OK! And you did great. :yes:
My only criticism is the same as others mentioned; the hospital should have kept her longer and given another epi. Butt you guys were fabulous.
Now for nice, pampering mother-daughter activity!
Took DD to see the allergist today. All is going extremely well. She blew a 450 on the peak meter!
I knew from past experience to ask about DD's skin on Friday when she is off the prednisone and the doctor agreed - her skin is going to be a big issue. If you are prone to eczema and you take prednisone, coming off it makes horrible eczema that is hard to get in control.
The doctor has started the paperwork for approval for Elidel. I hope the insurance co approves and we can fill by Friday so we are ready. I don't like DD using Elidel but she has not since 2008 and I know her skin will need it.
She showed us the new injector - so cool!
PC, can you explain a bit about the exzema? My husband is on prednisone right now (weaning off actually). His psoriasis is clearing up, which is great. But, will it come back worse when he's off?
According to the allergist it is well know by allergists that while on prednsione a nice side effect is that eczema is eliminated but when you stop taking it the eczema returns with a vengeance. She said it is a steroid to avoid if you have a choice and the patient has eczema.
I do not know about psoriasis.
(On the other hand she joked, at prom or wedding time it would be a way to have beautiful skin.....perhaps not completely a joke)
What I do know from experience is when DD was young, before her food allergy diagnosis, we'd be in the ER in the middle of the night with horrible asthma and flared eczema (really a food reaction I think now) and one of the drugs they would give her is prednisone. Then we'd come home with a 5 day regiment. After she'd stop taking it, we'd have weeks of horrible skin that I could not control. Poor thing was still a baby and toddler and I was always at my wits end....not knowing at the time what the prednisone was doing.
That is why I knew to ask about what would happen to her skin on Friday.
Might be worth a call to your DH's doc, or at least you will know a possible culprit if it flares.
Thanks for the info. It definitely is the prednisone clearing it up. The doctor actually told him it would clear up. But he didn't warn it might come back worse.
I'll have to check what his last day is, and how long before he's in to a doctor.
Dh has to take Zantac every 12 hrs for chronic hives. It is the h2 histamine blocker. For him, the Zantac works great!
Glad to hear your dd is doing better. How scary! Glad you used the Epi!
Oh wow! I'm so happy she is okay. You did a great job. It is funny you mentioned about the EPI hurting. I looked something up about EPI pen yesterday and on the "insert" it talked about the shot not hurting. it struck me that it mentioned that a few times, then today i read your story and your note that your dd said it didn't hurt.
I think the account of how the reaction progressed etc. is so valuable because it helps us in our own management in case we are ever in the same situation.
Give your dd a hug and you probably need one too! :heart:
The last time I used the epi, it didn't hurt at all - in fact, I was worried that I didn't do it right, but held it in for the 10 seconds just in case.
Now, part of the reason it didn't hurt could be that I was distracted by the whole not breathing and thinking that I was going to die thing - in fact, I suspect that was a good part of it.
I accidently stuck my self with a real epipen while training a new babysitter last year :hiding: There was a bit of a sting, but I thought I just swung too hard and hit my vericose veins. It wasn't until the blood began running down my leg (I did indeed hit a vericose vein) that I relized what happened. For the size of the needle, I would expect it to hurt lots more...and when adrenaline is pumping, I'm sure you would feel it even less!
I wrote to the bakery , told them our story, noted that they are not required to list any sesame allergen warnings, and asked them to consider adding a sesame warning on their labels in the future.
I got the nicest note back written by the gentleman who originally spoke with me about the safety of their pita bread. He expressed such genuine concern for DD and really took to heart what I asked. He is going to bring it to the attention of the bakery owners, etc... for consideration. I couldn't have asked for more. What a great response.
DD continues to do very well! She was quite impressed with the note I received.
Glad to hear there are no lasting ill effects :heart:
And a positive experience with the bakery is a bonus :thumbsup:
OK I need a clarification. Steroid via IV doesn't help?! We've not needed them yet but I would have assumed that was the number one best course of action. So can they give epinephrine via an IV or is it an Epi-pen only? Because I'll give another epi myself if the ER argues with me!
BTW I gave ds a chocolate bar with a may contain warning on the road. Could have been worse...I had given the same chocolate bar to my 2nd ds who is also allergic, but he hadn't opened his yet. We only had to find an ER for one kid and it did not progress pass a queasy stomach and a touch of sensation in the throat. Benadryl cleared it up. And yet I still wonder if I made a mistake not giving the epi.
Brownie