Life after using the Epi for the 1st time

[MaryM]

I'm looking for any advice or words of encouragement you all might have.  We used the Epi on DD 10/24.  She is still complaining of scratchy throat or tongue, stomach ache, trouble swallowing.  Not all at once but she will tell me some symptom she is having a few times a day.  I know her environmental allergies can cause these symptoms and I've told her that.

We ended up back at the pediatrician's today. DD was complaining about symptoms.  I asked if she needed an EPI and she said no.  I knew she was ok, no distress but still complaining of symptoms.  A little while later just before we were supposed to leave for ballet she complained about something else and I asked if we should go to the doctor and she said yes.  I called the doctor, spoke to a nurse who spoke to a doctor and they said to come in.  He checked her over and we talked.   He said she has a lot of mucous and that can be causing the symptoms.  I asked him about post traumatic stress and he said that could be a real possibility and he reassured her that she is just fine.  He wants us to add Nasonex to her daily routine and hopefully that will help. If not we may add Zantac too to help with the stomach aches... I'm a bundle of nerves.  I have tried very hard to be calm whenever she tells me about her throat being itchy or whatever symptom she chooses to share with me.  I've tried to reassure her.  I am not sure what to do anymore.  I am an emotional mess.  She has no idea how hard a time I am having dealing with this.  I feel so badly for her bc I think she is just nervous and doesn't know quite how to deal with it.  I remember being an emotional mess after I had a much more severe reaction when I was in my 20s.  I was scared to eat, I knew that I was being irrational about some things but I was mid 20s.  I can't imagine how a 7yo processes this sort of thing.

So, how did you help your child get back on track after their first Epi?  Any ideas for me?  I've told her more about my bad reaction and how I felt, I've tried to reassure her....I am feeling very, very overwhelmed.

[Stinky10]

   It sounds like you are doing all the right things.    Hopefully the meds will help her some and that will lessen your nervousness.

[GoingNuts]

No advice, just   

[SilverLining]

It does sound like you are doing everything right. I wish, when I had my first injection of epinephrine (in hospital as I wasn't carrying ) I wish I had someone in my life I could have talked to. Nobody understood, and looking back, some of the advice I got from doctors was really bad.

[becca]

   No advice.  We have been fortunate. 

[my3guys]

  Mary.  My DS seemed to block out his shot of epi in the allergist's office, and appears to be doing the same when I gave him the epi, so I don't have any advice.

I'm sure it's very difficult for you too because you have food allergies and have had severe reactions.  Hopefully starting the meds will help her symptoms, and then it will fade more into the background.  We are big Nasonex users in the fall here.

All I can think of is to try to keep you both distracted, let the meds kick in, and hopefully things improve.

[Macabre]

What they said. Before you got to the Nasonex part, I was thinking you should try additional allergy meds--at least during the high environmentals times. The zantac is also a great idea as an H2 blocker and an antacid. I sometimes take one at night to relieve both allergy symptoms and reflux.

It was harder on me I think than DS that first time. I hope you are telling yourself that it's normal to feel anxious after the first time and you are being good to yourself. And kind to yourself.

[MaryM]

It does sound like you are doing everything right. I wish, when I had my first injection of epinephrine (in hospital as I wasn't carrying ) I wish I had someone in my life I could have talked to. Nobody understood, and looking back, some of the advice I got from doctors was really bad.

I felt the same way.  Its the reason I found the old place.  I was desperate to "talk" to someone who understood and I did not know anyone who had ever had an allergic reaction or a food allergy.

Thanks everyone.  I am hoping the addition of the Nasonex will help. 

I am at peace with the decision to Epi.  I know it was the right thing to do.  I was not sure for a few days and was beating myself up about it.

[PurpleCat]

Mary, I have been in your shoes with my DD and I have no personal allergy experience to draw from.  It is so very hard.  My DD had different experiences depending on what she was exposed to and how much she ingested.

Egg & cantaloup were the mildest with most symptoms resolving in about 48 hours.  Nuts were about a week.  The longest lasting was her reaction to sesame.  From her feelings, to real symptoms to her eczema....it seems like for her it was a good 2 or 3 weeks.  Yes, she was on prednisone for 5 days, benedryl for a week and a half and albuterol every 4 hours for 2 weeks.  Her skin got so bad that we had to reintroduce Elidel, which I hate for her to use due to the skin cancer warnings...but it was that bad and everywhere.

I am not a medical person.  In my mother's opinion, I think it took that long for DD's body to rid itself of the allergen and to stop the cycle of reacting. 

That anaphylaxis was definitely biphasic and the second part was so much worse than the first.  That one scared me.

The only thing you can do is listen, take every concern seriously, and tread gently....all of which you are doing.  It is hard to be the mom, the interpreter, the one getting the complaints with no direct understanding of what you child feels like.  Simple safe food, slow down the activities (DD ended up skipping dance for 2 weeks because when she tried the first class - I think 2 days later - it made her symptoms worse.),....I don't think I slept much during that time.

Hang in there and good luck to your DD.  May her body and mind heal soon!

[Mfamom]

Hi Mary,
I'm so sorry your DD had a reaction.  I'm happy she's ok and hope that the symptoms she's having afterward clear up.
Never beat yourself up about using the epi pen!  you can't go wrong following your Mommy Instincts and using the epi pen. 
I don't have any advice, but I will keep you in my thoughts! 

[MaryM]

It's been 2 months since we used the Epi.  DD still tells me multiple times a day about itchy mouth or throat or stomach ache.  I know she is fine and looking for reassure and I am trying to reassure her.  I get completely stressed out though bc it makes me so nervous.  I am at the point wher I do not want to be alone with her bc she is stressing me out so much with her complaints.  I will ask if she is ok, she will say yes and I tell her she is ok but it's wearing me down.  We are going to see a Broadway show next Staurday, jus the 2 of us and I am a nervous wreck.   I'm not sure what to do for her.  She's als afraid to go to bed alone and cals out to me multiple times to make sure I can hear her.  That's party epi and partly A scary episode is Dr. Who.  I am missing my fearless DD

[my3guys]

Mary I hate to even type this...but any chance a new allergy is brewing? Maybe OAS to fruit? Sorry you guys are still struggling. Do you like your allergist? Maybe schedule appt to review symptoms and talk about Epi?

[spacecanada]

Have you considered seeking the help of a counsellor or therapist for your DD?  It sounds like she may have some residual mental symptoms from the reaction/epi/situation. 

At the age of 7, some kids understand logic but many don't quite get it yet or it requires a significant amount of energy to process.  It's also at that age when some children need constant reassurance and praise from adults, which can be helpful or detrimental depending on the situation.  You want to take medical conditions seriously, and address real symptoms, but you don't want to reinforce attention-seeking or (irrational) fear-enforcing behaviours either.  Such a tough situation to be in, because you don't want to miss those real symptoms and you want her to tell you when they happen.  (Never cry wolf, kwim?) 

What does her doctor say about the frequent symptoms/complaints?  If she is still having symptoms multiple times per day, there's something else going on that needs to be addressed and brought under control.  It may make her more comfortable and reduce those symptoms down to the ones that matter most.

For what it's worth, Nasonex gives me bad side effects that mimic what your DD is complaining about, as it does to my GP's son as well.  Had to switch to the dry Rhinocort instead, which made a big difference because it was powder instead of spray. 

[MaryM]

my3guys - I thought it might be, but I am pretty sure its more anxiety and the need for reassurance. MIL babysat on Saturday and DD did not complain at all.  She does it more to me than DH.  Certainly some attention seeking behavior.

spacecanada - I have thought about a therapist.  I have mentioned it to DH.  I am having a hard time finding a balance because I want DD to tell me if she is having symptoms but she tells me so much.  Sometimes with a smile.  I know she is stressed.

I really like our allergist but when I spoke to her after the incident she didn't sound convinced that it was a food reaction.  DD has a ton of seasonal and environmental allergies too.  She agreed that we did the right thing by using the Epi since we were not sure.

I may call our pediatrician and see what he says.  His DD has or had (not sure if she has outgrown) food allergies and he really understands what it is like to parent a FA child.  We always seem to end up seeing him after a food issue.  He is fantastic. 

When I had a terrible reaction in my 20s it took me a long time to recover mentally.  I was afraid to eat, I would cry just thinking about it.  Its just so hard.

[CMdeux]

She has no idea how hard a time I am having dealing with this.



I wouldn't count on this-- not completely, anyway.  Your DD has always struck me as very in-tune with you, Mary-- and from my own experience with my own DD (who is also equally in-tune with her mom)...  it takes an enormous expenditure of energy for her to NOT pick up on anxiety from me, if I'm having emotional trouble.

Seriously, almost active Zen-meditation level effort.   



I second the recommendation to perhaps explore specific mental health resources-- but caution that this is probably only something to undertake with the help of your allergist.  I know that ours would happily brain any counselor that told DD that all of her food anxiety was "maladaptive" for sure. 


One other thought-- any chance that the huge assault to her allergy system is causing her threshold to be reduced dramatically with respect to an "outgrown" allergy?  We've seen this with DD and milk.  Her tolerance is normally almost normative at this point (at least if you didn't know her and follow her for a week to see how she modulates intake)-- but in the wake of a reaction, it drops pretty radically.