So yesterday's post was serious and heart wrenching for me to write, but needed to be done for the start of our journey.. so today I am going to lighten it up- How to explain Evan? He is sweet yet sour, compassionate but quick tempered, witty yet whiny, speaks his mind (have noooo idea where he got that from) and is just a generally loving child- I think a lot of FA kids have so much compassion for all areas/aspects of life...
So I guess the funniest incident of this OIT journey was when I went to mix his dose for home- we get little condiment cups with pre-measured peanut flour that we are to mix with 1-2 tsps. of applesauce- So I had been nervous about it but done it for a bit and was good, had my system down and all...
Yeah, well about a week or so in my husband was actually home for a dose, and he was "watching" me mix and bam it went all over the counter (already mixed and all)- so damn irritated I banished him from room.
Well last week Evan had some friends over and they wanted to see how it was done, so my dumb ass said "sure, come in kitchen and watch"- so I had tapped the top of cup and sides and got all the peanut flour loose and was about to mix applesauce and somehow the cup went flying and now I had peanut flour all over my kitchen... I panicked- locked dogs in kennel so they couldn't track it around my house, banished all 3 boys to shower (one at a time) and cleaned every surface and mopped my kitchen then took all FOUR dogs for a bath- yeah I know y'all are thinking "don't you feed him that" YES, but any extra that he is exposed to is still dangerous... so my husband gets home and I immediately tell him what happened and how all four dogs were under my feet and we need a new house or kitchen because one entrance is too big for a baby gate- his response was " Well, maybe if you wouldn't scream "dose" to our child like he is a dog and then give the dogs the remainder of the applesauce there wouldn't be confusion".. Yeah, I hate when he makes sense- it rarely happens in my opinion but the fact I couldn't respond, because I guess the dogs have mistaken "dose" for "treat"- I didn't really speak to him the rest of the night- did I mention I hate when he makes sense... LOL
other incident... I have a potty mouth- I can admit it- it makes me feel better- don't judge- so the first consult trip happened to coincide with tropical storm.. oh yeah, some fun weather for us- Evan is on this swear jar kick and every time I swore, he would then tell me I owed it.. I wanted to strangle him- so a few weeks ago, I turned the tables- I told him fine then I was starting a disrespect jar and every time he sassed me, back talked, rolled his eyes or was just rude in general he owed that jar a quarter, so, then we went into the whole "its not fair, blah blah blah" then he responded with "you kiss your son with that mouth"... OH MY
I am still waiting on DCF to be called- he tells Sylvia, Dr. Nash's nurse, when we went for our fist up dose that I mixed alcohol with juice (have no memory of how this conversation was even started), I was just flabbergasted- ONE, I really don't drink but maybe once a year- I don't have time... and when I do, Evan isn't even around and I mix Crystal light, water and watermelon vodka (wonder how many of y'all are going to try this now? It is really good) - then when I was trying to have a conversation with Sylvia he screams something about "take that sucker" while playing a video game so I hollered "Evan" he looks at Sylvia and was like "yeah, ask her what comes out of her mouth daily" I seriously think I died right there.. I wasn't getting on to him for the "sucker" it was the loudness of his voice while I was trying to carry on a conversation.. RUDE! So I gave that "look" to him and he went all serious and says "Please don't beat me to a pulp"- Yep, because I frequently take time out of my day to beat him, when he is gonna do it again and again... OMG- pain in the ass I tell ya...
Now, about that swear jar.. I got a free pass this last trip, and it was a rough trip- we decided (Evan) to pull up my google maps app and give me a new route when we got into NC- yeah, the scenic route it was, complete with 20 MPH roads, and nothing in sight, no stores, no gas stations, but I could seriously see my murder happening in this place.. CREEPY, then my damn cruise control wouldn't work on the way home and I was cussing.. quite creatively I guess because Evan gave me 6 free pass for creativity.. at one point when I was yelling at my husband about my cruise control, and he was telling me " Honey, I can't do anything right now, when you get home we will get it fixed" and that was soooooo not the right response and then followed with "what do you want me to do?"- well guess what my response was- " I want to you to fix the damn thing now, it is pissing me off and if I get a ticket because I cannot set my speed then I don't want to hear a f***ing thing out of your mouth..."- Evan reached over and took the phone and told his dad "yeah, this swear jar, I need that money for the years of therapy I am going to need from riding in the car with this woman"...
So, I will say while it has been a hard road getting to OIT, I am thankful for it for so many reasons.. FIRST is securing a long, healthy future for my child, and SECOND all the quality time this pre-teen and I get to spend together... LOL
Thursday, July 25, 2013
Wednesday, July 24, 2013
History and getting started
We have recently started a new journey as a family for our son Evan- for OIT (oral immunotherapy) for his life threatening food allergy to peanuts; I am going to summarize his history and this journey so far, and then it will be easier to follow- I am a newbie at this..
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...
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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