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Just a little miffed


peglem

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Very weird appointment. On the way, my Hub said we should just make like she's got major skin problems- if her doc is looking for that as a reason to treat. I was like, "Uh, he can SEE her skin!" Anyway, we did talk about her skin, and he did point out a faint scarletina pattern on the soft underside of her arms... Anyway, the upshot is his partners and several specialists feel that the rifampin may be a bigger gun than is needed, and should only be resorted to if lesser measures fail. There was also the opinion proffered by the other docs (the rheumy in particular) that the treatment goal and/or measure of success cannot be based on behavior...there should be a more tangible medical (nonpsychiatric?) goal. But, also there is no concrete evidence that she has something that should be treated w/ rifampin (except that it works dang well for her!)

Bottom line- we're staying on the zith and adding in bactrim (because she possibly has staph causing inflammation in her skin?) I'll check back with him in 5 days to see how that's working for her. He gave a script for prednisone as well- but we'll wait until 5 days w/ the bactrim added in before we start the pred, so we can tell what the effect of just the bactrim is.

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Peg

 

Dr J is treating danny for inflamation to shes using celebrex and a baby asprin.been 2 weeks today I dont know if anything is diffefernt.I called his psy and I am bringing him in again.I hope alot of this behavior stuff is age and not perm...I have an IEP meeting today , what about LDN my psy said maybe..Do you have any good info on it?

 

Melanie

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  • 4 weeks later...

So, an update on this situation....

 

The bactrim did nothing at all-zip zilch. But, the prednisone did help- some- but she's not back to the OMG-its-so-nice- to-have-my-kiddo-back state that rifampin does for us. So Monday I took her in to see her pediatrician again, pleading that maybe we should be looking for why the rifampin helps so much- it must be killing something, and floated my slow-growing organism theory by him. He said that was a good strategy, and decided to do a TB test and get a chest x-ray to try to find evidence of something (hoping it would be easy) that would justify rifampin treatment to his colleagues. We did the x-ray today and brought her back in so he could check the TB skin test (though neg. results are likely anyway w/ immunocompromised patients and those who have recent pred. treatment). Well, no evidence. The radiologist said it was inconclusive, but could not rule out anything- a CT scan would be the next strep. So our darling pediatrician (I truly do not understand the kind of crap he's getting from his associates in the practice) leaves the exam room to try to make the case to one of his associates that we know the rifampin gives my daughter dramatic improvements and its reasonable to assume then, that there must be some microbial invasion that is responding to the treatment...and is it really worth the trouble of putting my daughter through all kinds of scans and procedures to find evidence of the source when we already know what treatment works. (like, duh, how insane is that?) Further, the fact that she is on monthly IVIG makes it impossible to do IgG testing to identify the microbe(s).

 

I know this was discussed because I eavesdropped on the conversation, and I wanted to charge out in the hallway and scream at that woman when I heard the way she responded...She argued with him that the treatment has made any difference: "she acts just the same as every time I've seen her" and "is she even verbal?" This doctor has seen her exactly one time- before rifampin treatment and Allie is currently in a PANDAS flare- but she has NOT seen the difference the rifampin makes. And since when are the verbal more worthy of treatment than the nonverbal? (hey, she's a pediatrician- one would assume she treats many infants who are nonverbal!) And then there was more discussion about treatment "endpoint". I totally don't get that- when a patient has a chronic condition that you cannot cure (like many autoimmune diseases) you treat symptoms when there is a flare- why does there need to be an endpoint? The conversation finished with my ped asking her to help him determine an endpoint. He was clearly frustrated with her response (but was very properly professional).

So then he came back in to talk to me about what she had said...and blessedly, at just the right moment, my daughter who had been laying on the exam table playing with travel mug lids (latest crippling obsession) suddenly rose up and smashed her head, very hard, into the wall.

Her pediatrician was stunned...and said, "This is the worst I've seen her in a long time! She shouldn't have to go through this when we know how to help her. I'm not going to refuse her treatment just because of what everyone else thinks." And he said he'll get with her immunologist (who is sympathetic and will help) and he'll have a treatment protocol for her by Monday.

Please, if you are the praying type of person- pray that God will bless this pediatrician and all our physicians who stick their necks out, suffering persecution, to help our children.

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Prayers to you & yours peglem. Thankful for those are doctors and do help patients (sick human beings) & their families.

 

I pulled the Hippocratic Oath off of Wikipedia. I've been curious about it lately & the whole "First, do no harm" thing. Here it is...read it and weep:

 

 

HIPPOCRATIC OATH (Modern Version)

 

I swear to fulfill, to the best of my ability and judgment, this covenant:

I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.

 

I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.

 

I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.

 

I will not be ashamed to say "I know not," nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.

 

I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given to me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.

 

I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.

 

I will prevent disease whenever I can, for prevention is preferable to cure.

 

I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.

 

If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.

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Peg,

Thank God there are some honest doctors out there still! I'll pray God will protect him!

I think he has a very good point in bringing up the "need" for a CT scan. We were considering doing one on ds and looking into it I decided to wait. Some people here pointed to some studies which highlight the risk. It's about the equivalent of getting 100 regular x-rays! So keep that in mind in the future. Yes, Rifampin in strong and you don't want to use unless you need it, but you know it works and have not seen any adverse reactions from it, on the contrary, she gets surprisingly well on it!

Maybe you could do short clips of your dd each day to keep a before/after record for that nay-sayer to see the difference it makes.

DO WHAT WORKS FOR CRYING OUT LOUD!!!

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Peg,

Thank God there are some honest doctors out there still! I'll pray God will protect him!

I think he has a very good point in bringing up the "need" for a CT scan. We were considering doing one on ds and looking into it I decided to wait. Some people here pointed to some studies which highlight the risk. It's about the equivalent of getting 100 regular x-rays! So keep that in mind in the future. Yes, Rifampin in strong and you don't want to use unless you need it, but you know it works and have not seen any adverse reactions from it, on the contrary, she gets surprisingly well on it!

Maybe you could do short clips of your dd each day to keep a before/after record for that nay-sayer to see the difference it makes.

DO WHAT WORKS FOR CRYING OUT LOUD!!!

Yes, he said he thinks the rifampin treatment is safer than the CT scan.

I wonder what his colleagues believe to be the reason he wants to do this treatment? Do they think he is just trying to satisfy a mom who spends too much time on the internet? Do they honestly believe I would subject my child to this for nothing? The only alternative they offered was bactrim, which did not work. I feel like they are completely losing sight of my child's suffering, and worse, don't think she is worthy of the effort because she isn't smart enough, verbal enough, likely to become a "productive" member of society (pick one or make up your own). They are making judgements about the value of her life. Scary.

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I feel like they are completely losing sight of my child's suffering, and worse, don't think she is worthy of the effort because she isn't smart enough, verbal enough, likely to become a "productive" member of society (pick one or make up your own). They are making judgements about the value of her life. Scary.

That is just sick...

 

Maybe they would be convinced if you did a cost/benefit comparison... how much is a CT scan versus a course of Rifampin?

 

Not that it matters really, but his people's thinking is so totally backwards, maybe reverse Polish logic will work on them???

 

Just sad, so sad that they are in any way looking at her current behavior as part of the mix. If anything, they should be thinking, wow, this girl is obviously suffering here, let's just do what we can to help her.

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