posted
We have a 12yo boy suffering from neuroLyme - severe cognitive deficits. Has gotten worse since starting IV rocephin in January.
he's withdrawn from school, doesn't want to see friends (more cognitive than depression we think) is constantly dizzy - and to top it off, has been allergic to most things related to the PICC line. We've had to keep it wrapped in gauze most of the time since he has tape, chloroprep and tegaderm allergies.
This week her PICC got kinked and clogged and had to be pulled. My boyfriend (his dad) made the executive decision to give the kid a short break off the meds w/o consulting LLMD. We *could* have had the doctor put it in the other arm... but this kid is so beaten down...
Then we get home... and get a call from LLMD office - 'Ya'll outta know that the doc was very upset when he heard about this! He does things for a reason and really wanted him to stay solid on that med. If there's consequences y'all will have to deal with it w/ your PCP' (I guess they mean relapsing)
Not sure if they are more upset about having to deal with getting new insurance pre-authorization for the cathter (which are horrible) - or impact on the kid's treatment. I thought a break was good sometimes??
How bad do you think we screwed ourselves (our kid?). I am in tears... feeling bad for my kid, but also feeling like I'm failing him by not being strong enough to push through treatment when my kid is falling apart.
Wondering if there is any way to get the meds into him via regular IV... who can authorize that? We still have all the 'balls'...
quote:Originally posted by mama_tried: [QB] We have a 12yo boy .... This week her PICC got kinked and clogged and had to be pulled. My boyfriend (his dad) made the executive decision to give the kid a short break off the meds w/o consulting LLMD.......
-huh?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
It might be 3 wks before we can get a new PICC in him.
The doc is unwilling prescribe an alternative (I feel like maybe he is maybe punishing us... but that would not make sense if we are putting the child's best interest's first, right?)
Is there a way to walk into a nurse's office and ask for an IV - given that we would have the ball=o=meds labeled etc. Or does that take doctor's orders too?
I do have some doxy he can use... his psyche is so fragile and damaged right now. and he was so happy to have that damn thing out@
Posts: 6 | From texas | Registered: Apr 2011
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posted
It's a he... I also have a daughter and fat fingers. We go out of state to see the doctor.
Posts: 6 | From texas | Registered: Apr 2011
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posted
Well, it did need to get replaced - we could have said put it in the other arm. But our hearts won out over our logical minds. (I should have kept that analogy of a kid getting chemo in my mind - it really is that important).
Our LLMD is out of state, which makes it all even tougher to coordinate.
posted
He's been anxious, sensitive since a baby - increasing to depression/anxiety in 2nd grade... blowing up into fatigue/headaches/anxiety in 5th - and recently mood disorders (bipolar?). Just diagnosed this fall, started on IV Feb 1st. But's it's been a bumpy road - as is everything with this sensitive kid.
I'm still so bummed about my decision - it's hard enough to be on the wrong side of the 'regular' medical establishment, but I cringe to be on the wrong side of my lyme doc.
Still feeling like a sh*thead, despite wanting to cry for all the pain this has caused my boy,
momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Can you e-mail your LLMD and perhaps explain in a little more detail your situation?
Sometimes moms get a bad rap, but we do know our children the best, and if the decision was to give your son a break, then you must follow your instincts.
My daughter pulled her own PICC line...I know, she was out of her mind and she thought that the PICC line was killing her...but looking back I wonder if it was just right on the mark thing to do?
Her LLMD at the time freaked out...and what could I say or do? For her, I think the IV was just too much.
If I could do it over again, I would of had my daughter take breaks all along, but back then, that was considered a HUGE no no...it isn't frowned on so much these days.
So, you see, hindsight is always 20/20. You can either beat yourself up about it and second-guess yourself, or you can move forward.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
By the way, my daughter was "diagnosed" with just about every mental disorder known to man, and she is totally well...it ALL cleared up.
Maybe you can use this break to gently detox your son...lemon water and epsom salt baths once in awhile would be profitable.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
Don't beat yourself up over this!! You did what you could with the information you had. You know your son better than we do! You know what he can handle and what he can't.
We are all stuck in this disease, floundering around doing the best we can.
Shoot, I have seen 2 LLMDs and wasted a lot of money. I am not one step closer to "better". So, what is a small detour on the way.
That is the way I see it. I do things with my child that other people don't always agree with (like medicating her to begin with), but I do it out of love and hope that I am making a wise decision.
I would rather I make a mistake based on love and best knowledge of my child, rather than making a mistake based on what so-and-so thinks.
My 2 cents.
Posts: 13 | From Florida | Registered: Mar 2011
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
You didn't do anything wrong. It was judgment call and to be honest, I would have done the same thing. The reality is, an individual can only take so much, including children. The child likely would have pulled through what is probably a Herxheimer reaction and felt better, but at what cost?
Having a new line put in and resuming treatment in the near future is fine, it's really no big deal other than dealing with red tape and money.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Thanks guys - you make some reassuring points! My son's sanity is just as critical as his health. (and very intertwined...)
Posts: 6 | From texas | Registered: Apr 2011
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