My 2 YO DTR has allergies and the last episode I had a panic attack I think...

[Pamaro]

Hi,

I am a mom to a beautiful little girl.  She is allergic to soy, wheat, milk, fish, eggs, peanuts, tree nuts, chicken and I may have to add apples soon.  She also has asthma and eczema.   In her 2 years I've used 3 EpiPens and I feel like I am failing at this HORRIBLY.  She was tested at 5 months because she would get incredible hives after every feeding (breastfed).  So I ended up having to stop breastfeeding and started using NEOCATE formula.  Long story short they didn't do a thorough testing and unfortunately I had to find out she was allergic to fish after giving her salmon.  I made the mistake of not reading a label thoroughly and she ended up having another EpiPen.  This last episode she was eating apples and she has eaten apples since she was 8 months old (apple sauce) never had a problem.  This last one she didn't show any signs other than collapsing in my arms, she had a massive fever.  We called the doctor he said to give her the EpiPen injection and call 911.  I injected while my husband called 911.  After the injection she vomited ALL over me, there was stuff in my shoe!  We took a ride in the ambulance and we hadn't done that before.  Within minutes she seemed fine again, perfectly fine.  They sent her home with prednesone (spelling?).  I think I ended up having a panic attack on our way home that night.  I feel helpless in keeping her safe!

I am hoping to get some help from those that have similar allergies.  Don't know if you guys have tips for foods that are free of her allergens that I can try.  I am afraid to feed my child...(sounds horrible but it is the truth).  SO I am hoping you guys are a good resource for us!

Thanks!

[CMdeux]

VERY VERY big  to you.

Oh, how my eyes welled up reading your post.  You are SO not failing.  You just aren't.

So many of us have been where you are.     My daughter is now a very smart-mouthed (but obviously living and healthy) 14yo young lady. 

When she was two, I:

a) suffered horribly from PTSD after a reaction that nearly killed her-- my DH made the mistake of picking her up and holding her upright while her BP was crashing-- she turned white and her eyes rolled back in her head as she SWOONED.... I'll never--ever-- ever-- forget that night.  Never.  I really thought she was dying.  I rode in the back seat with her, epipens out and ready-- SCREAMING in her face to keep her responsive on the 80 second ride to the emergency room.    That was the last reaction in which she had widespread hives... and I've seen worse reactions since, but that one haunts me still-- she was so little, and we've never figured out what caused it.  She hadn't left our (allergen-free) house all day.    I still remember all the details-- I don't count on it, but eventually some day that last puzzle piece might appear.  {sigh}

b) I was also so incredibly depressed-- she was supposed to be "outgrowing" some of her many food allergies... and it wasn't happening-- she was gaining new ones instead.  I cried the night that I had to make her pumpkin tapioca... er.. pancakes?? for dinner because that was all that I could figure out that she wasn't allergic to at that point...  I cried because they were so revolting that I'd have rather eaten cardboard, and it was all that I had to feed her.  What on earth was I doing WRONG??

c)  I felt so incredibly lonely-- I couldn't TAKE my child anywhere because other children always had FOOD.  Food that my child was allergic to.  We couldn't even go to the darned public library.  Every outing was a serious danger.  It was awful.  I had no friends because-- really, who not living this could possibly wrap their brains around it? I was living it and it felt a little un-real.



Not to provoke your fears-- but to let you know that you are not alone.  You are not doing anything wrong.  You are doing a GREAT job-- you did the right thing where I failed-- you gave your child epinephrine when it was needed.  I did not.  I could have lost my daughter and then had to live with the knowledge that I failed to do what I should have.

Some ideas to feel more in control:

a) give yourself permission to listen to your gut and put its advice before all others.  If your mom-gut says "Nah, we'll skip that party" then DO IT.  There's usually a reason.

b)  don't listen to anyone that doesn't live this-- not about this-- YOU are the expert in your child's food allergy and in keeping her healthy and safe.  You'll get better at this very big job with time, I promise you.   

c)  develop a protocol for foods-- but always defer to mom-gut and its inner voice.  If it tells you that "now" isn't a good time to try "new food" then that's fine-- save it for a day when a trip to the local ER would be more convenient or less harrowing.

d)  develop a protocol for BUYING food-- try to read labels three times, and if possible, using two or more literate and undistracted adults-- once when you put it in the cart, once when you put it away at home, and once as you open it for use.

This stuff isn't weird-- it's just what you do when you live like this.

I'm really, really glad that you found us.  Hang in there, okay?  Your little girl is VERY lucky to have a mommy who cares for her so well.  Truly. 

[twinturbo]

You're not alone. My youngest first anaphylaxed at 7 months to barley which is very rare. Since then it's been cow's milk, all closely related grains to barley (wheat, even oats), beef, temperature change (systemic), and most other top 8 allergens test highly positive, plus severe sensitization to dust mites. To make matters more obscure he is dermatographic rendering his skin tests nearly useless because even his control is reactive.

Oral challenges are not very practical to us at this point because he is developmentally delayed in speech making a challenge merely pumping him full of substance until very serious signs of anaphylaxis show up. So we're at a tough spot as well.

It's hard because there's no treatment but everyone who doesn't have to actually caregive 24/7 wants to inform you on how it's not so bad.

Yes, I do believe we can determine some sort of stable, nutritious diet that can help keep down the hospital trips enough to get some stable time in which you can say, yes, it's time for a controlled introduction schedule based on what makes sense for this child's allergen list and nutritionally.

But sometimes you just need to say wow, we're going to ER every six weeks (it was a cluster of bad luck for various family members) the family needs some time at home being a family with a routine. Some spacing before taking on more risk.