Friday, March 9, 2012

Welcome To My Party...


I'm giving myself all day...until midnight on the dot...to cry. A lot. The ugly kind of cry, unless the boys are asking to dance or smile or eat or be kissed or hugged or tucked into bed. Other than those times, it's all about my pity party. Just today - and then I'm done.

Added to our emergency stash of rectal Diastat for Gavin's possible seizures...we are now adding an EPI pen.

Brian has a peanut allergy that prompted the doctor to give me an unsolicited hug with an "I'm so sorry...this is so disappointing." that made me feel like I was at a viewing. He is allergic to peanuts and tree nuts, like cashews. She did test him for Gluten and Wheat ALLERGY, which came up negative. But she agreed that he likely has a Gluten and Wheat INTOLERANCE once I told her the changes I've seen since eliminating them from his diet. It might all be a coincidence, but his bowels have improved...his speech has improved...and his behavior has improved.

Brian was an angel during the testing. My secret weapon was to give him MY iPad which has Angry Birds on it. It's such a treat for him to play that game.


And the nice nurse who did his testing offered him a lollipop which is also a rare treat. He was in Heaven.


Meanwhile, Gavin was the ever patient brother. He's used to being the patient so laying back and relaxing while his little brother was getting the needles was just fine with him. But there's bad news with Gavin, too.


He has been suffering with seasonal allergies this week - and I thought that was it. But this morning I noticed a change. His mucous was thicker and he was struggling more to manage it in his throat. The allergist confirmed that it looks like he has a cold...AGAIN!


So he's really struggling with allergies and a cold, poor kid. And Brian could be right behind him. I noticed congestion with him today as well. And lots of pointing to his nose which is my cue that he needs a tissue.


So. If I was afraid to send my kids to school or on a bus before this...now I'm terrified. One who might have a seizure. One who might need emergency epinephrine. I know there are lots of kids who manage both. And I know that there are lots of labeled foods that make it easier on parents. And I know that Brian will get used to what he can and can't eat as he gets older. But today I just want to wallow. Tomorrow I'll be fine and we'll get on with it. We'll do what we have to do and not complain.

But today - I shall cry.


2 comments:

  1. Dawn (mommy101702)March 9, 2012 at 3:24 PM

    (HUGS) I never thought I'd send my girls out in the world without me, either. Allergies to top 8 allergens plus, a few other foods; pollen allergies, asthma, epipen, inhaler...all the fun stuff ;) lol BUT, they are both in school...Peyton is in the 2nd grade and Campbell is in pk-4 :) You just have to inform, inform, inform everyone involved...I know you can do that, Kate :)

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  2. Hey hon, I know it is disappointing. I am the mom of special needs twins. They are now 6 1/2 years old.
    We had both tested multiple times throughout their lives for allergies. I must tell you the RAST test is not accurate until they are at least 4.

    Ours came up as allergic to cow's milk (no symptoms), allergic to eggs (no symptoms), allergic to dogs and cats (no symptoms).
    John did have an issue with reflux as a baby and we did eliminate gluten for a while, when we were diagnosing him and we saw some improvement but when months later we went back to feeding him normally (we are in Greece, and our selection of gluten free foods is almost zero.. plus they cost a FORTUNE), he was fine.

    Fish Oil REALLY helped with speech!! I mean REALLY HELPED. I got the Animal Parade Omega 3 and they ate it quite hapilly.

    What I wanted to say is, even if he is allergic or intolerant to something, he might still grow out of it :)
    And on the plus side, you are so lucky to be in the US. Try living in Greece where a pack of (horrible) gluten free cookies costs $10 and a pack of 200grms (6oz) spaghetti gluten free costs $4!!
    And that's your entire selection :) You can't even get a loaf of GF bread unless you go to the other side of town and spend about $30 on gas and the actual bread itself :) lol

    Many many hugs!!
    Tina

    PS. Our stories are very similar btw, it's just that I am a couple years ahead in the journey :)

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