Thursday, April 23, 2009

Scratching the Surface

I hate medical research. Big words, lots of Latin(I sucked at Latin in high school) run on sentences and lots of contradictory information. My wee, overtired and rusty gray matter isn't used to all this smart people stuff. It's been awhile since I have had to use it for that purpose. And while I have amassed a number of degrees in my lifetime and am licensed, a scary thought, to practice all kinds of things here in my state, the big fat D- I got in anatomy my freshman year of college pretty much says it all when it comes to my ability to understand, let alone perform, medical procedures. And that is as it should be. Those who can, do, those who can't, teach and those who really can't, are patients, or in my case, the mom of a patient.
And even though my friends really do call me in times of medical need for a quick armchair diagnosis of many ailments, sadly I am not licensed to prescribe fun drugs or any for that matter, to anyone. I suppose the state knows I would hand out Vico.din like Halloween candy if given the chance. And the world would be a better place for it I assure you. But that's another post.
This whole allergy/anaphylaxis thing sucks. Bottom line is the docs want to find out why and what made Cason react like he did. So do I. But not at any risk to him. And guess what I have heard so far.
From my pediatrician, who I adore: "Cason isn't a good candidate for scratch testing because of his anaphylaxis." (Scratch testing is where an allergen is placed in a needle and then the patients skin is scratched with the needle to see if it reacts to the allergen) (Scratch testing can result in anaphylaxis).
Later that day from the allergist: "I want to scratch test Cason with the actual vaccines he got, diluted way back, to see if we can illicit a reaction."
From me: WTF?
Allergist then proceeds to use several phrases that generate a panic like response from my body. Phrases such as, 'highly unlikely", "very rare", "we've managed anaphylaxis in our office before", "we're equipped to handle that type of emergency here". He says these things to a woman, me, who in the past two and a half years has had a perforated uterus during a "routine' D & C and had to be rushed to the hospital because of this "rare" complication, a stillborn son, while not as rare as I thought, I later found out, it sure as hell wasn't on my radar either, and a son who according to the literature I've read, had a one in a million reaction to his vaccines. How am I supposed to take any comfort in a doctor telling me what he wants to do might, could, may, possibly, send my son back into a second episode of anaphylaxis? And I ask him, can you do it in a hospital and admit him for two days because anaphylaxis can take up to 48 hours to occur after an exposure to the allergen. He says that would mean he would have to stay at the hospital all day and he doesn't see how that would work for him. And I am in my head saying I don't see how exposing my 5 month old baby to something that can KILL him and just taking him home and watching him to see IF he has a reaction, works for me. Out loud I am trying to talk over the lump in my throat and I tell him just sitting in his office for a few hours for monitoring doesn't seem like enough, not near enough, precaution to me.
He tells me he understands my view. He knows it must have been very traumatic for me. He has NO FUCKING CLUE. I don't even know how traumatic it was for me because just thinking about it makes me want to vomit. The idea that I could have to watch it happen again. I can't even go there. The idea that it might be an acceptable risk to him and that he isn't willing to do anything more to protect against it than just watch and wait. Fucking nuts.
Allergist is going to talk to his partners about what I asked for. I doubt they will agree. My pediatrician thought it wasn't an unreasonable request. But of course, he saw the reaction first hand, the allergist didn't.
There are more blood tests they can do but none of them will conclusively tell us what happened. There is a theory that it was gela.tin, a binding agent in the DT.A.P vaccine but without eliminating the others we can't know if it was that or a combination of the vaccines or what. And if we want to have Cason vaccinated we need to know as much as possible about him and his allergies.
Which is why I am doing this medical research stuff. It is also why I need a vico.din. Damn D- in anatomy anyway.


Rachele said...

I can't even imagine. Big *hugs* for you from another babyloss mommy.

Gideon's Mommy

Michele said...

OMG, I cant even freaking imagine. There's no way in hell I'd do the scratch tests, not until he's older, and even then... I cant say I'd do it. We've decided to postpone vaccinating until our children are older (we'd decided this long ago, not to do it on the traditional schedule) and to not do bundles, simply because of the allergy issues. It's such a scary thought and I cannot even imagine what you are going through. I am sending you warm thoughts and hopes that you can find something that isnt as scary!

G$ said...

I guess one "good" thing to come out of the last two and a half years... you stick to your guns on care. Which isn't an easy task when doctors try to bully you into something that the little woman in the back of your mind is screaming DON'T DO!

You are in my thoughts, you will make the right decision here. I will fly down and punch someone in the throat if I need to.


Hope's Mama said...

I suck at Latin, too. K, I am thinking of you. I have no ideas or advice, just lots of love for you.

Ya Chun said...

a 2nd allergists' opinion?

A better clinical chemistry lab? They should be able to do a blood immunodiffusion assay in the carrier agent. I don't know if they've done that and still want to check further, but maybe check as much as they can NOT on your son. (DUH)

Miryam (mama o' the matrices) said...

This guy is an arrogant idiot. Or, he's ignorant.

A vax is usually given into the muscle, which means that Cason managed to pull off a seriously impressive reaction from an IM shot? Even if the vax was very, very diluted, I would be really hesitant to do the scratch testing. Our allergist in NY won't scratch test a highly allergic kid for a potentially severe allergen - and he's the top guy in the field.


Which means that your local allergy doc is a serious shmoe, who isn't paying attention to the risks he's asking you to take. Beyond unacceptable.

I'd walk away, and see if PubMed has any recent articles with authors based in your area. You want someone who's seen enough to believe that a kid can pull a fast one. Who won't fuck around with a child's safety, especially after their 'fast one' turned supersonic!

Shannon Ryan said...

wow, follow your heart, if it doesn't feel right, don't let them do it. big hugs!

Sophie said...

My faith in doctoring has disintegrated since our experiences with Jordan. They don't know nearly as much as I thought they did and should, and they have way too much fun playing the "let's see what happens" game.

Surely if anything, they would wait till Cason was older and stronger before doing any testing like that?

My son had an allergic reaction to something years ago. He came up in a horrid itchy rash all over his body (doesn't compare at all to what poor Cason when through) and we took him to the docs to be treated. On the follow up visit we asked the doc what we could do to test for the culprit. We thought it was strawberry yoghurt or pinenuts. The doc told us to feed him these things again and see if he reacts. I looked at my little boy, relived the last few days, and said "No thanks!"

Big hugs. I hope they can come up with some better/safer options for you and Cason.

Aunt Becky said...

I am an anatomy overachiever. But more importantly, I have Vicodin. Come on out to Illinois.

(I'm coming out your way in the next couple months. We are SO hanging.)

Tash said...

Fuck. Me. This is horrible. Ok, having seen Measles make a quick recurrence, and ditto mumps in the state next to mine, I'm going to out there and say that I think you should continue to look into allergy testing so that you can eventually immunize him to some of this other deadly shit.

I'm with everyone who said find another allergy guy. This sounds completely unreasonable, and in fact I think it was incredibly unprofessional to tell you in so many words how he thought you must have felt. Fuck him, indeed. I can't believe you didn't say that out loud, because lord knows, I would've and then marched out of the office. Find another allergy person.

CLC said...

I'm with everyone else. I vote for a new allergist. HE doesn't get it. And Cason's life is well worth any doctor's day in the hospital. F- him.

loribeth said...

Trying to figure out my own allergy problems totally sucks. :( I can't imagine trying to figure it out on behalf of a helpless infant who can't talk to you. There is so much the doctors don't know. I say go with your gut on this. Good luck.

Mommy (You can call me OM) said...

Oh, geez. I'm so sorry you are facing these additional decisions. I hear you when you say that you've come out on the wrong end of the stats. It's true. We know we cannot take refuge in the safe side of stats. It hasn't held true.

I'm thinking of you and praying for you, my friend. Please keep us posted.

Coggy said...

Kal sorry I haven't been around. Demons this end to contend with, not as hardcore as all this vaccine stuff though.
I hope they've been sensitive to your wishes, I mean for fuck sake all your asking is that the appropriate medical care be there if needed.
First thing I asked this time with Em's jabs was if they had the kits there in case she had a reaction. Think they thought I was insane.
If there is anything I can do, if you want me to wade through any reading or find stuff or just listen give me a shout - call or email. Always good to hear from you x x x x x x x x x x x Big hugs to Cason, his bride-to=be is looking forward to meeting him ;o)

Mommy (You can call me OM) said...

How are you doing? You haven't posted for some time and I'm hoping all is reasonably well.


Alice said...

I know this probably isn't helpful but I don't trust anybody in the medical profession at all. These people are massively arrogant and they don't really have any clue about the possible effects of what they are doing. If you don't want to do what they say then don't do it. You know best. (I say all this while really knowing nothing about your situation. Sorry). With love, Alice

Brenda - you can now find me at : said...

Big hugs.