Living with Food Allergies, 2013 and on

[spacecanada]

And so today I've jumped over the fence onto the 'I don't want to get allergy shots' side.
I'm not afraid of needles.  I'm very afraid of reactions. 

[CMdeux]

Is it horrible that I reflect back upon those days as a fabulous team-building time with our allergist?  He definitely got to KNOW us very well in those days-- and I know that it changed his impression of me from "hysterical mom" to "level-headed and even fairly calm" and dramatically changed his attitudes about DD as a patient-- he knows that she is not exaggerating a thing in terms of her reactivity and sensitivity.

He knows that we aren't over-reactive, if that makes sense.  If anything we tend to UNDER-react very significantly.  That understanding means that when we ask for him to go to bat for DD, he does it, without a lot of skepticism. 

I will also say that I think those experiences opened DD's eyes a lot, too, and let her understand that multi-system symptoms should ALWAYS be taken seriously-- a hive and a runny nose is technically anaphylactic, if mild, and should be monitored closely even if you happen to have a crash cart ten feet away.

Strangely, though, it let us experience a LOT of reactivity at that grade 1 level and as a result, we don't tend to panic during reactions now. 


Does that make sense?  It was valuable, but I never would have said so in the first year.

[starlight]

When you're fully aware of cross-contamination of foods but forget it can happen with other things.

I tried something new on my hair a couple weeks ago, a heat protectant. Had a major case of contact dermatitis after using it for about a week - woke up with swollen eyes and a rash on my neck. Washed my hair and my sheets and PJ's and stopped using it. I'm still itching, and it finally occurred to me, after not using it for a week, that maybe I'm recontaminating myself with my hairbrush. Ugh.

BTW if you're not prone to contact dermatitis, I highly recommend CHI Silk Infusion. It was amazing while it lasted. 

[LinksEtc]

DD cracks me up.


We open a new MDI for asthma & she starts singing/rapping:

"2 puffs in the air like you just don't care"

to describe the priming process.


 


I could write a book.

[CMdeux]

Love that!! 

[LinksEtc]

Well, dh just asked if it would be ok if he didn't go to dd's upcoming allergy appt ... has work to do ... that's fine I guess, maybe even for the best in case the doc opens any of several cans of worms: Links, sesame petition, asthma plan, SM ... oh my ...


       



Well, it will be good to know how she wants to handle things ... just talk about dd's medical stuff or get into the other also .... I'm fine either way.  Feeling a bit awkward, but hoping things will be more normal after this appt. 



Do your docs know about your online activities?  Do you talk about it or is it kind of a forbidden topic?  Do any of you chat with your docs on social media sometimes (I've seen at least 1 doc-pt pair chat sometimes about general stuff but others think best to keep distance/boundaries)?  My #1 priority is that they take care of dd ... I don't want that messed up.



Hmmm ...

[ninjaroll]

I'm unsure if these are state laws but our doctors are forbidden from using social media with us or even email for patient care.  There is an established portal with the medical facilities that we can use to send and receive information. 

[LinksEtc]

I can't seem to get the interview to play for me at the moment, but if I remember correctly, I think the doc actually gives his Twitter handle to his patients at appts & says they can follow (usually tweets general allergy/asthma educational info):

"Dr. David Stukus Talks Twitter, the LEAP Study and Much More"
http://foodallergyconsulting.com/dr-david-stukus-talks-twitter-the-leap-study-and-much-more/


Whereas I've heard other docs saying they don't want their patients following ... one even blocks his patients, which to me, seems quite extreme.


I get the feeling each doc-pt pair is going to have their own philosophies/preferences.


-------------------


I wish patients could easily choose the level of HIPAA protection they want ... people knowing you're our doc fine, but keep that really private med stuff between us.  In the future, I wonder if pts will sign forms acknowledging anything doc says on SM is not medical adv ... informed consent for SM. 

 


Just rambling at this point ... interesting stuff to think about.

[CMdeux]

I'm unsure if these are state laws but our doctors are forbidden from using social media with us or even email for patient care.  There is an established portal with the medical facilities that we can use to send and receive information.

I think that this may be instititutional practice/protocol, and not state law. 


I also know that not all of the physicians in that practice are particularly pleased with how extreme it has become, either.  Physicians can't even do paperwork without sending it to the Borg now.

[Macabre]

I interpreted Links' question as more general. Do they know in general.  There are gobs and gobs of allergists on Twitter, many of whom we follow and a number  follow us.


My answer: No idea--wouldn't matter to me if they did. No big deal either way for me.

[ninjaroll]

No matter how it's asked the answer would be the same.  At least according the rules that our docs have been following.  There's a sort of Fight Club vibe of no talking outside of in person or through their portals, BUT that might be their social media policy.  We can talk briefly over calls though the preference is all routed through the patient portals.

[LinksEtc]

There's a part in here saying something like "ooooooh, I wouldn't want to be your therapist"

Re: Social Media


 


Yeah, kind of thinking (actually I know from past experience) there are allergists that wouldn't want to be my allergist.



Well, if anyone will know how to "handle" this stuff, she will.  Whether she likes me or not, approves of the allergy stuff I've done or not, I trust that she will take care of dd. 


The Links side of me is interested to see how this plays out ... the mom side of me
is more like.     I had separated the 2, now that strategy is probably not going to work so well.

[ninjaroll]

Why would anyone hold you singularly accountable for regulatory reform?  Say you were to 'blame' it's neither a nefarious activity nor is it limited to food allergies.  Stick to business and he or she should do the same.  Any doctor opening online activity with me might not like staring into that abyss long enough it starts staring back.  Some things I really, truly do not want to know about service providers including like their social media activity.  The probability is too high it eventually leads to things I could happily go to my grave not knowing about him or her.

I'm not insinuating our current local one does anything weird but I'm not looking--ever.  I don't mean to be abrasive but you know me well enough no one will ever accuse me of graduating from charm school.  Going beyond patient scope on my dime is not a relationship I would continue.

[LinksEtc]

I'm pretty confused by the whole thing, but my gut says I don't need to be worried.

I'm also guessing some things discussed may remain "off the record", no posting.   

Thanks for letting me "think" about this a bit.

 

[ninjaroll]

Like this: The lion, the dentist and the social media mob

Can't say I have an opinion on the Cecil controversy itself but that dentist chose to keep yapping at virtually any media outlet that would help him broadcast his big game hunting, including his history of related legal troubles. 

Links, you'll never know a person until you know what's on their hard drive... or cloud.  Then you'll wish you never knew to begin with.