Wednesday, November 16, 2011

Dreams Coming True

I always had this fantasy of the day Max would be able to eat dairy.  I saw it as a sudden thing.  We would go into the allergist.  He would pass an oral challenge then we would go by all kinds of dairy products take him to his school and have a class dairy party.

Year after year his numbers stayed the same.  When they finally did decline his skin test was still huge.  Once that diminished we failed oral challenges two years in a row.  We were finally given permission to try milk baked in goods but by this time the fear had built in.  Yes, he could tolerate baked milk, he just didn't want to go there.

Today we had an oral challenge to cheese at the allergist.  At he age of 9 1/2 he finally passed.  So do we go home and celebrate with a plethora of cheese products.  No.  The fear is still there.  He also says he doesn't like the taste.  Nonetheless, it's a dream come true.  Something I had almost given up hope on.  At this point though it is not the glorious feeling like the heavens had finally shone bright light upon us that I had expected.  It's more of a "huh, how 'bout that."  I guess because it doesn't mean that Max is going to jump into eating mac n cheese and grilled cheese sandwiches.  This too will be a gradual process.  It may still be years before we walk into a pizza joint and get the double cheese stuffed crust pizza.  Dairy went out of our life suddenly with hives and vomiting and swollen faces.  It will enter quietly and gradually they way change usually happens.

Sunday, October 16, 2011

Dairy Queen! Yay!

Sorry bring a little snide.  Just got an email from Owen's soccer coach announcing an end of the season celebration at Dairy Queen!  Yay!  I know I have mentioned (in person and email) that Owen is allergic to  dairy (maybe he doesn't know this means ice cream too?) but this apparently has been forgotten.  My first reply email was "Hey!  We won't be able to make it to Dairy Queen.  Owen is allergic to milk (and eggs and sunflower seeds).  But feel free to go on with the festivities without us.  I won't mention it to Owen so he will be none the wiser."  My husband felt this was putting the coach in an awkward spot as then he would be watching what he says at practice and would feel bad if he slipped up.  Well, okay sometimes I don't like wearing others shoes as I don't always think they even try to wear mine so my reply was "So what."

In my heat of the moment angry phase, I will say "Why do I have to spare his feelings?"  Or the feelings of the Mom-who-brings-snacks-my-son-can't-have-and-then-acts-the-martyr as she "discreetly" says to her friend "Well, goldfish are what every Mom brings".  All I said is "Thank you for letting me read the label.  No, he can't have those."  At this point I have to say, your feelings about this situation are YOUR feelings.  I'm sorry he has food allergies and it is inconvenient to you in some way.  Though I have to wonder WHAT exactly is the inconvenience.  That he has them?  That he can't have what you proposed? I'm sorry.  I HAVE NOT asked you to change anything.  ALL I have said is he can't have those or he can't come to that.  It is not a judgement on you IT IS A FACT OF OUR LIVES.  That is it.  It is what we do everyday. Avoid.  Everyday.  Despite soccer games or end of the season celebrations.  Sorry I made you feel something.

So my real email read "Owen is allergic to dairy (and eggs and sunflower seeds).  So we won't be at the Dairy Queen festivities.  You've been a great coach this season.  Thanks for keeping the little guys motivated."

*Breathe out* I had forgotten how therapeutic my blog is for me.  Just had to get that little vent out.

Tuesday, October 11, 2011

She Might Grow On Me

The allergist that is.  We have been to see her every week for the past four weeks.  History for both the kids and then full skin and RAST testing.  We've spent a lot of quality time with our new allergist.  And, grumble, grumble, she's okay.  I will grudgingly like her.  Mainly because she has managed to tell me somethings I don't know and she wants to challenge a number of things on both kids to perhaps open up our diet a little.

The main thing she explained was conformational versus linear allergy in children with cow's milk allergy.  Apparently, studies have been done regarding children who can tolerate highly heated cow's milk products such as those in baked goods.  It has to do with espitopes attaching to proteins.  And though I understood her explanation at the time I'm not going to be able to explain it in plain English.  The gist of it is that they have discovered that those allergic to milk can be split into two groups; those with conformational allergy (able to tolerate highly heated milk) and those with linear allergy (those who can't) AND at sometime in the not so far future they hope to be able to TEST people to see which they are.

I had wondered what the shift in allergists' views had been as it seemed suddenly that not only was Max given the go-ahead on trying baked milk products but so were a number of food allergy families that I know of.  It seems to me with this study it isn't just that our children are now tolerant, it may be that they always were and we just didn't know it.

Food allergy research still has a long way to go.  But maybe we are making some head way.

Here's the only online info I could find on this study.

Sunday, September 25, 2011

"I'll need to give you a demonstration on the Epi-pen"

Starting a full time job awhile back really cut into my blogging time.  Not to mention my ability to think about something other than work, my own kids, feeding them and keeping the house clean.  But then, about 2 months ago...we moved.  From east to west.  Virginia to Oregon.  So here we are.  And with a new place comes a new allergist.  Two kids, loads of complicated history.  I think we tend to overwhelm.

Our first visit to the allergist was Friday.  We started with Owen, which in hindsight was part of our mistake.  So by the time we had waited in the lobby for 35 minutes (Max and Owen are not good waiters)  I was already annoyed.  Which was apparently evident as the nurse immediately started to explain that they were running behind.  Which leads me to our second mistake.  I had been figuring the appointment to take an hour and half tops and had scheduled Max's first drum lesson for later in the afternoon.  You are right I shouldn't have scheduled anything else that afternoon.  I don't know what I was thinking.  I guess part of it is that food allergies are so much of a part of my life, I just expected I would go in there, say test for this and this and this.  His asthma seems fine right now.  Read through his records and catch yourself up.  I wasn't counting on needing to go through ALL of the history AND being questioned about it.  I guess on my part another mistake.

She wanted to start with his asthma history and it quickly became evident that she didn't think we were doing enough or that he had been monitored properly.  They wanted to do various lung function tests and add an albuterol inhaler.  They also think he needs one at school.  Though he never has needed one in the past.

As we started in on the food allergy history, I felt I was put on the defensive immediately with her questioning why I had even had him tested to begin with.  Throughout she kept interrupting (to go along with all the times my two children were interrupting).  I kept losing my train of thought and felt myself getting flustered and nervous.  But when she interrupted me to explain how RAST testing doesn't indicate severity and history is the true indicator of a food allergy I had to pause.  She then asked me if I had ever had to use the Epi-pen.  I said no the one time Owen needed it we were at the allergist and she did it.  Her reply was "Okay then we will need to do a demonstration for you before you leave today."  I was taken a back.  Really?  I have been raising children with food allergies for 9 years and you think you need to demonstrate the Epi-pen for me?  I exploded a little in a flustered unproductive not very helpful way and explained that after 9 years a knew a lot about food allergies indicating Max and his somewhat healthy 9 year old self.  And that we had seen some of the best allergists on the east coast.  I could kick myself for that.  I SO don't want to be east coast and it may have seemed like I played a "the doctors are better on the east coast" card.  Friday night I lay in bed going over how I could have done it all better.  Because you see, we have moved to a much smaller pond and this is the only pediatric allergist in it.  We may be stuck with each other.  Which means I need to do a better job building this relationship.  And at the same time she needs to recognize that I know what I am doing.

I know we are new to her but we are not new to food allergies.  When I said I had never had to use the Epi-pen perhaps she should have replied "Wow, then you've done a great job on managing these kids food allergies."  Doctors need to realize that as parents of children with special circumstances we live with it for 24/7.  We manage their food allergies everyday and in that educate ourselves over and over.  Not to mention demonstrate that damn Epi-pen for every grandparent, babysitter, teacher, parents of their friends, coaches, etc.  Anyone who is alone for any length of time with our kids get a demonstration.  Give us some credit.  We already do know something.