Evan was 4.5 when he was diagnosed with a peanut allergy, although it should have been found sooner in my opinion- at 2 weeks old he started with constant vomiting, runny nose, congestion, and eczema, his pediatrician at the time said his eczema was "dry skin from him scooting in his crib"..he is 2 weeks old, how much scooting do they do? I had another pediatrician then diagnose him with eczema and told me to dip him in "Mazola oil"- I am not shitting you!!!! So for the first 4 years of his life we were in and out of hospital with asthma (diagnosed at 18 months), fever of unknown origin, and failure to thrive; that last diagnosis really bothered me because the only sign he had was not gaining weight..
In all this time, we ate peanuts, at all family functions we ended the festivities in the ER... I never put that together because he never ate them, not from my lack of trying. I would offer him PB and jelly sandwiches, candies, etc and he would refuse.. now I wonder if he "knew" at some level.. Now comes the scariest phone call I could have ever received. Evan was in pre-school and they were doing a project involving PB and carrots, well he saw a little boy dip his carrot in PB and eat it, so he followed suit- I then got phone call from administrator saying he was having severe breathing issues, his throat was closing and had "hives" every where; they had already called 911- I rushed to our hospital and they were already life flighting him to children's hospital- longest drive of my life. Evan spent 13 days in ICU on oxygen and many other machines to help him survive, followed by 7 more days in step down unit- we received diagnosis of peanut allergy- okay, I got this I thought. His pediatrician had stopped by to see us and after looking at his "rash" of hives, he said this is definite allergic reaction, the same thing he had been telling me was eczema for years- but I was still not referred to allergist- so I went to the library and checked out every book I could- found out that I needed an allergist, what restaurants were not safe, the cross contamination factor and the fact that my child could die, and that folks is the scariest but truest of them all.
I went to one allergist in our town, called and emailed several times and informed them of peanut allergy, told them when I checked in, I thought I had all my basis covered...LOL- a few minutes later the doctor comes strolling in and gives all his staff Reese's PB cups and apologizes for being an "asshole" before- yes the whole waiting room has heard this- now my husband who is the most laid back non confrontational person, goes to window and basically said something to the fact "are you kidding me?" So the "allergist" walks out and starts YELLING at us for being over protective and there is no such thing as airborne/contact reactive and we have watched too much Oprah- yep, our first rodeo was a complete disaster... so after calming down and finding another allergist in new town, I had our consult scheduled. I immediately fell in love with him, and he told me I had every right to feel the way I was and that I had to be "that mom" because yes, my child was a perfect candidate to die from his peanut allergy given his airborne reactions... What? that is what you say to a child's parents? Are you kidding me? Yes, I had read that but did you have to say it out LOUD- but now I am very PROUDLY known as "that mom" i.e. psychotic, neurotic, overly protective helicopter parent who takes away all our peanut products in the class room.. or to sum it up in their words THE BITCH! That's okay, I will take that...
Several years, and several reactions, and asthma worsening we stumbled upon a face book page called "Peanut Anaphylaxis Cure" and started reading all about OIT, and I could not believe this... I immediately checked this page 10 times daily and then showed my allergist, I got the "it is experimental, but lets get Evan's asthma under control first" he was down to 31% lung function, on 3 inhalers, steroids and pneumonia yearly.. his last testing showed early emphysema- he was 9! So we went on a controversial injection called Xolair, and many people (doctors included) somehow think that this is going to help or lessen an allergic reaction, well truthfully I don't want those symptoms to be masked, they can spiral out of control so easily... this injection is painful, and I HATE it for Evan, but ya know what- his asthma is under control, he plays soccer and his lung function in the past 2 years has come up over 60%- so the phone calls to allergists offering OIT begin... There are not many- because FDA has not approved it- really they need to approve peanut flour and applesauce, given by board certified allergists, in a private practice office? Yes, I guess so because we would not want all those clinical trials and greedy executives to not get their dues... UGH will not even go there-
I met with Dr. Scott Nash in Raleigh, NC on June 6th- I immediately felt relief just with his demeanor, and knowledge.. he was patient, kind, upfront and explained everything to us- not that a million questions did not pop up after that appointment..LOL
We began OIT on 6/25/13- what this consisted of the first day is we went to the office at 8:30, and started out with 0.1 milligrams of peanut flour mixed with applesauce (a whole peanut is 300 milligrams). then progressed to 0.2 mgs, then 0.4 mgs, then 0.8 mgs, then 1.5 mgs, then finished at 3 milligrams, or 1/100th of a peanut..
We then went back the next day and did the 3 milligram dose in the office again under supervision to be safe- then went home for 2 weeks and dosed on schedule- then on 7/9/13 we went back to NC and did dose of 6 milligrams, we wait in office 2-3 hours to monitor for reaction, then repeat the 2 weeks at home- yesterday we went up to 12 milligrams- Evan has had no reactions (well severe) that concern me- first day of dosing he had mild hives around mouth but they went away, and then had flare of eczema for about a week, but the last 2 up doses, smooth sailing...
To say this is LIFE changing is an understatement... the opportunities this opens up for him, as little as him being able to go to a friends house, have a sleep over, go to a professional sporting event, kiss a girl without a background check, just live life everyday to the fullest.
Kids with life threatening food allergies are truly remarkable people.. the things that we take for granted on a daily basis or things that some of them NEVER get to experience, and don't complain, just accept it as a safety precaution their parents have set up, they have so many fears, and anxiety (how could they not) but most of the time the hide them because they don't want to be different, they are picked on and excluded in so many ways, but ya know what, they keep going day in and day out and I am so proud of my child and the many others I have learned from... XOXOXO to all my food allergy moms out there..
************WARNING************* this post was very controlled for me, but I will say future posts may have harsh language and not suitable for everyone, because lets face it- I drive 16 hours round trip with a pre-teen pubescent boy and my mouth is filthy...
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