I need a pep talk

[MaryM]

I know there are so many things worse than food allergies, I really do.  Right now I am just devestated about our failed challenge yesterday.  Our allergist is still optimistic and told me not to give up hope. I have done so well the past 2 years but now I'm back to crying at the drop of a hat, you know, my Whole Foods doesn't order Divvies anymore bc they don't sell well.  Rationally I know I can just order them but today I am in tears.  Am I the only one in my area dealing with this.  A Facebook post from Mt. Sinai this morning shows the happy smiling face of a boy who passed baked egg yesterday.   I  happy for him, but so sad for my two. DS has one more year after this in the loving and wonderful elementary school.  Life may get so much harder for the boy who rolls with it and isn't upset about the fail.  I was fantasizing about inviting all of their friends for a pizza party.  I was thinking about how great it would be to not have to bring chicken nuggets to every birthday party. I let myself dream too much and I am feeling so sad and alone.  My DH doesn't seem phased.  Maybe bc he doesn't have allergies or maybe bc it's a man thing.  Who knows.   Sorry to have a cyber pity party here but you guys are the only people I know who really get it.  I'm tired of putting in the happy face and saying that's it's not too hard to handle, I've been doing it for 9 years.  I want to tell the curious parents who ask at parties that it sucks, that we can't go out to eat like normal people (I trust one restaurant and it's pricey) that my kids never really can do things on the spur of the moment bc I always have to plan the food.  I want to say how much it's going to stink for DD when the sleepovers star bc I doubt I will feel comfortable letting her go.

[Mfamom]

I'm sorry, Mary.  I'm very sorry about the failed challenge.  Very disappointing.
My dh is a bit funny about allergies too.  He gets the epi pen part and the labels etc.  but he really wasn't supportive of challenge etc because he says why risk and we've lived like this for so long etc.
it is a sucky road though.  Its so hard to see your kids not have that freedom to eat whatever they want and all the planning and worry with social things and sleepovers is really rough.  I've definitely felt it over the years. 
I don't know what else to say except I'm sorry and give you a cyber hug!   

[becca]

 

So sorry, Mary.  People really do not understand the constant stress when every single meal has to be thought out and planned so your child will not need a trip to the hospital.  It does get easier, but there is always that, "Hey, let's all go for ice cream!"  And we sit there or hope they sell a safe candy at the ice cream stand.  For a milk allergy, even a soda could be risky at a messy ice cream stand! 

You do a great job keeping your kids safe and helping at your school.  You have had a rough time lately between your dh being sick and injured, and stress.   

It is a good thing that your kids rolled with the results.  Recently, another parent of a child with a FA told me how his child felt like he failed when is bloodwork and SPT remained + for his allergy.  He was very down, and felt responsible, like failing a school assignment.  We never had that problem, only true disappointment, but never a feeling like there is any way we can affect it.  So, I had honeslty never considered that angle, and that some kids may feel that way. 

So, it is a credit to you that your kids are very happy, healthy kids, even with their allergies.  You are a great mom!   

[CMdeux]

It is a huge credit to you that your kids ARE so well-adjusted with this.  Milk, wheat, and egg are so different than a single allergen... SO different a lifestyle than "just" being nut allergic.

It's just a different world.   A world that has SO much "not for me, though" written all over it.  You're right-- it's very hard to explain to others.

When you're the major caregiving parent, that sets you up to be the aribiter and buffer for your children's interactions with "the real world," and yeah, with food allergies, it's so hard to keep doing that year after year.  OF COURSE you hoped that the challenge would go better than it did.

OF COURSE.  How could you not and still be human?  You can't help but want something better than this for your children.   

When you're ready-- I'm going to reiterate the first thing that popped into my mind yesterday re: this:

[spoiler]
Highly suggestible kids need (or even if you suspect that it's a possibility) a BLINDED challenge with a control.  This is how we've always done DD's controls because her subjective symptoms tend to be the harbingers of very serious imminent objective ones (like low BP).  So we have to rely on subjective symptoms, but we also need a way to tease apart possibly psychosomatic ones.  For example, with our hazelnut challenge, the vehicle was applesauce, and the "control" sample had some flax seed meal in it-- while the "dose" was done with increasing amounts of hazelnut meal. 

It can be tricky to figure out an appropriate control sample-- but (personally), I wouldn't do a challenge now without one.

This might also allow you to do both challenges at once still-- rather than doubling your driving/appointment times. 

[/spoiler]

[GingerPye]

Yes, MaryM, we all know how you feel, truly.   

I often feel far worse than my kids do.  It's all they've ever known.  Most of the time we just roll with everything.  Then once in a while, there will be a party or dinner or something and my kids either choose not to attend or to eat beforehand, or take their own food.  Then it hits me, and I get really sad and mad about it.
But --- as I tell my kids-- everyone has some cross to bear.  Food allergies are our personal cross to bear --- and it's a do-able one.  We can handle it.  It's not like a terminal disease or something else equally bad.

Are my kids going to outgrow these allergies?  it doesn't seem likely at this point.  So, it's life as usual for them.  And I have to say that my DD esp has adjusted to it very well.  DS --- gets bummed when he can't just order off a menu anything that looks good.  I hope that dissipates with time and that he learns to live with it like his sister.   

[hedgehog]

Mary, I understand

The allergies you deal with can be more difficult that "just" PA.  But PA hasnt been DS's only issue.  early in DS's life, every time I thought, " OK this  is feeling normal now.  We can deal with this," something else came up.  He was diagnosed with epilepsy two years after PA, then once he was in school he started having some issues there, ADD plus other things that don't necessarily fall into a neatly labeled category.  So, yeah, I get just how overwhelming it can be day-in, day-out over the years, and then to suffer a disappointment.  It sucks.  But after the disappointment,it becomes life-as-usual again. 

[GoingNuts]

Mary, I don't think there's anyone here who doesn't understand how you feel today.

We're all putting our arms around you, and telling to go ahead and cry on our shoulders. 

I don't think Dr. Nowak would be so encouraging if she felt there wasn't validity to it, because I know when DS asked her about a sesame challenge due to the fact that he most likely eats X-contam goods all the time, she gave him an unequivocal "NO" based on his SPT and RAST.  She was 100% certain that it would be a fail, and wouldn't even entertain the thought.  She's the real thing, and she knows what she's doing.

So go ahead, and have a good cry.  We'll pass the tissues.

[MaryM]

Thanks everyone.  I'm really trying to get it together.  I just had a long talk with my college roommate's mom.  Her youngest (33) is severely allergic to milk, eggs, beef, peanuts, fish and probably other things too.  She made me feel better bc she raised a very healthy young man who is exceling in his career and who has travelled the world!  We differ on challenges but she is old school and didn't have a place like Mt. Sinai or Hopkins, etc.   But she was so encouraging and between her kind words and all of yours I'm feeling less alone.  I've got to pick myself up, dust myself off and move on. The kids are healthy and so well adjusted and that is a true blessing.

Dr. Nowack said we must be wishing Dr Huang hadn't left bc we are 0 for 2 with her & we all laughed.  She really thinks we could have pushed on in the challenge but I think she got the vibe we wouldn't be comfortable with it.  It was bad timing with DH's injury to add extra stress.

Thank you all for your kind words and cyber hugs & tissues - I used the whole box

[aggiedog]

Hugs.  I know the disappointment of hoping for resolution, and not getting it.  You try so hard to not get your hopes up, and honestly, it's impossible not to. 

You are a good mom.  Let yourself cry.  Tomorrow is a new day.

[yelloww]

Hugs! Ds is allergic to dairy and eggs too and has had failed challenges. It is a different way of navigating the world compared to a lot of society.  I know how much you'd give to get rid of a major allergen- I'd give the same if I could for my ds! But he's still your adorable kiddo and at least you still have that! I do get that it is hard to have some hope and some small dreams for simple things, and then have those little thoughts smacked down by reality. It stinks.

[LinksEtc]

 


It can be so hard after events liked failed challenges and rxns.  I hope you are feeling better soon.

[hk]

   I'm so sorry and we all do understand.  We go along dealing with the stress, fear and hard work of managing food allergies year after year.  Then a failed challenge or unfortunate testing results or a reaction hits like a ton of bricks.  I always feel like there is no way I can keep doing this (almost 8 years for me so far).  But, somehow, we pull it together and go on.  Hang in there.  It will seem less awful in a few days.   

[PurpleCat]

Mary, I echo much that has been said here.  I've felt what you are feeling.  I'm sorry about the challenge.

It's so sad and overwhelming and you are right, you do feel alone.  That is, until you come here  !

When you are standing in a social situation feeling that way know that you aren't alone, just different.  Some parents are like you but different.

My oldest has multiple food allergies so you know how I'm feeling with her.  My middle child is on the autism spectrum and he has a whole slew of social/sensory/emotional/behavior issues - so again I am dealing with planning, prepping, educating, coaching etc.....just in a different way.  If we were at the same party, you'd be in food alert mode, and I'd be in a different alert mode feeling isolated in pretty much the same way for different reasons.  Did anyone else have to come before the day to see how loud it was, to plan for ear plugs, to see how bright the lights are, to practice at home what might happen, etc..... I can not just drop and run. 

I am blessed with DS2 who has neither.  I can drop and run.  I find I can not, I always go inside and then stand there in disbelief that I don't have to do anything.  I have a moment of "this is it?  I can leave?"  This is how other people do this?  I'm always amazed how easy it is.

Now when we go somewhere as a family....well, I've 2 different issues to plan for.  It's exhausting.  But it's who we are.

One step forward, two steps back.....always.  I have the gray hair and stress to prove it!  But my kids are getting older and for both situations it is getting easier for them and for me.

As for DH, same here in both situations.  He's not all the way there, most of it falls on me.  I just remind myself, I can do this - just look at my kids!

[my3guys]

  I meant to respond yesterday, but didn't get a chance.

Those failed challenges are so hard! And milk and eggs are NOT easy, and especially limiting in social situations.  It took DS four years of Mt. Sinai to get to drinking milk.  He too failed the pizza at first.  Then he passed pizza and failed the next round.  Then passed the next round and failed the milk.  They were a long, hard four years but worth it in the end.  I think you have a good idea about making the muffins more often to see if that will speed up the process for them.  Just something else to add to your plate though!

My kids were probably second grade when I did this...I made a non-dairy pizza, and they really liked it for parties and such.  I would buy the Pillsbury dough, spread tomato sauce, then puree white beans with olive oil and a little bit of sugar, and kind of spread it over the sauce and bake it.  Sounds gross, but kids liked it and it was their version of pizza.

DS still hasn't kicked egg...multiple failed challenges there.  And we've begun managing dinners at friends' houses without us.  Never makes me comfortable, I'm always on edge, but luckily a few people are good about it. 

Hoping you're feeling a bit better today we're always here for you!

[MaryM]

Thanks you everyone!  I am feeling better now.  You are all wonderful.  I don't know what I would do without this community.

It is just so hard and of course DD was just invited to a sleepover party. 

I made the milk muffins and DD seemed itchy but we are now at the point where she knows what the symptoms of a mild reaction are and I cannot help but wonder if these are phantom itches.  She's an itchy girl in general and her eczema is a bit flaired from this very cold weather.

my3guys - your post really gives me hope!  Maybe next fall after our annual blood and skin tests we can try pizza again.  I make dairy free pizza for them but they don't love it.  They'd rather me bring chicken nuggets or something in the thermos to a party.  Pizza doesn't travel well.