Sunday, June 14, 2009

One of a kind

That's us. We met with the new doc again. (I call him Dr. Books, and I really do heart him). Here's the scoop. After all of his research and reaching out to all of the other allergy type minded docs he knows and even ones he doesn't, searching high and low for guidance on how to proceed with Cason, guess what? They can't find another baby who, at 4 months, had this kind of reaction to the vaccines. Not a one. Cason is in a world occupied by uno, him and him alone. Normally, I am all about unique and being your own individual but I gotta say, here, I would have liked some reassurance that this has happened before and here's how we handled it. That would have been useful. But, not me, not my child, not my life.
That being said, at least my doc has made it so that we don't feel as though we are all alone. He plans to see us through this even if our plan is, we don't have a plan. Which feels so much better than what the other doc, little Doogie Howser, whose mantra was, "lets just rush into this the same way we would any other allergy and start sticking Cason with things we think might trigger a reaction" wanted to do.

So for now, our plan is do nothing. No shots, no tests, nada. Cason is helathy. My elimination diet (now down to no dairy and no nuts with wheat and eggs back in) has really helped clear his skin up and settle his belly. He is healthy and developmentally on schedule. Dr. Books feels after conferring with a conference full of allergists and other immunoligists, which has to be a rip roaring good time, that waiting until Cason has a more established immune system and is older(maybe 2) and better able to communicate with us, IF we test him, is the best course of action. He doesn't feel any sense of urgency. The vaccines, while important, do not have to be given at this young age. It is unlikely(yes, let's all laugh as I type that) that he will be exposed to any of the diseases in the shots. We aren't big travelers(thank you fear of flying) and he won't be in daycare(thank you overpriced and sorely underused education ) so why not wait until we can more reliably test his immune system. The only hiccup in the plan is that we are waiting for the federal investigation to be completed. This is being headed up by a doctor at Joh.ns...Hop.kins and is part of a C>D>C Adverse Event investigation, that is looking into what happened with Cason. They will make a recommendation to us and it probably will include a particular blood test for one of the ingredients in one of the vaccines. The recommendation will allow Doctor Books to order the test which is not commercially available to him. This test he wants to do. It's 'only' a blood test so there is no risk that comes with it. Unless, of course, they screw it up and use a dirty needle or rip his vein out, but I won't go there.

So for now, we wait. I drink wine, in moderation...there's a term I rarely use in connection with alcohol, and skip the cheese. And Cason, he just eats, drinks and stays healthy. I hope. He is after all, one of a kind.

20 comments:

janis said...

I can just eat him all up in one big gulp. He sure is one of a kind.

I'm glad you found a good doc, they are such rarity these days. I am off dairy and I keep thinking of brie and cream all the time.

Hang in there. xoxo

Hope's Mama said...

What a gorgeous boy!

Heather said...

That is one amazing little guy you have there!

Cheers to good doctors... that can make all the difference.

Ya Chun said...

sounds like Cason will get a scientific publication all his own. Glad your doc is exhausting ALL resources and using caution

Aunt Becky said...

Dude, he is flaying me with sweetness. One of a kind, my kind of boy.

Reba said...

ooooh he's adorable!

i like your plan and your doc.

Tash said...

Oy. And yay for your doc!!

Say, I just read an article about a guy at CHOP who developed the roto vaccine -- his mentor was the guy who developed a few of the others. He's apparently the guru of infectious disease, but I'm thinking he probably knows a shitload regarding vaccines and effects. Let me know if you want his name.

charmedgirl said...

that's a really cute picture!

many called me crazy that i started the three on vaccines at 18 months (more like 2)...but i hear events like yours and i'm just so relieved. they're 4.5 and still not finished, and i don't care. no daycare, no playdates (their mom is a cunt).

i just can't even think about what coulda happened with you guys. it might be an acceptable risk for the CDC on a national level, but it's not acceptable to a mother.

Shannon Ryan said...

At least his reaction will spark some more research on the vaccines. He sure is adorable! :)

Michele said...

I am so glad to hear that Carson is doing well (he's such a cutiepie!) and that you've found a great doctor. For personal reasons, we've always been on board with delaying vaccinating for at least 2 years, and I wholeheartedly support your decision (and a doctor who supports you!) Please keep us updated with what they find out. Fingers crossed, prayers said that he will continue to be healthy!

G$ said...

I had this thoughtful reply to the doctor stuff, but it was all wiped from my brain with the beautiful Cason pic. Mindnumbing cuteness. Seriously.

I wish there were answers, but I am glad your doc is doing good legwork for my... er, your C-man.

xox

angie said...

he is absolutely delicious. beautiful.

sounds like you have a doctor with a good head on his shoulders. now, that i am shocked into consciousness with cuteness, i can go out and take a run. thanks.

Reese said...

What a sweetie!!!!

Alice said...

I think that doctors quite frequently interfere when they shouldn't. 'Doing nothing' and 'waiting to see' have a lot to recommend them in some medical situations, I think. I really know nothing about what you're going through - but could it have been a dodgy vaccine. This is a long, long time ago but my uncle was injected with a dodgy vaccine and got meningitus. Sorry. That probably isn't helpful. I really don't know. But I'm glad you're feeling happier with the situation. With love, Alice

Fireflyforever said...

He is adorable, K. Just peachy.

...and I like the sound of Doctor Books!

loribeth said...

That he is. : ) He is also absolutely adorable. Glad you've settled on a plan you feel comfortable with.

CLC said...

He is so gorgeous, I just want to hug him! I am sure you do all day long!
I am glad you have a plan that you are happy with. Dr. Books sounds dreamy!

kate said...

He is SO beautiful!!!

Brendan and Brenna's Mom said...

First- can he be more adorable? What a beautiful little guy!

Second- my nephew has very severe food allergies. It is not fun, and it's somtimes heartbreaking- like when we get ice cream and he only gets the cone! :( But, as you know, things could be worse. Take care.

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

okay, that pic just sideswiped me. Oh, hello there, beautiful boy.

(clearing head. failing. hells bells, gonna write comment anyway)

Oh, good. I'm glad an adverse reaction thing is being done with the CDC - excellent. Here's hoping they turn up something, if nothing too exciting.

And I heart your Dr. Books, also! He sounds sensible. I love doctors who walk the line between hands-off and bulldozer. Er, the medical line, that is, which is alarmingly thin, somehow.

Did he talk to you at all about carrying emergency epinephrine, once Cason's old enough for the smaller dose?