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Stunned- ds's treatment plan halted!


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We just had an appointment with ds's doc (rheumy) in which we were informed the IVIG that was supposedly being lined up for ds (which Dr L said he needed for his PANDAS at the beginning of December!) is now in question because something has apparently changed in this doc's mind over whether or not ds really needs it, and I guess whether or not he actually has PANDAS (Dr L was the one who dx'd him with it). The plan was initially: IVIG to boost his immune system, followed by tonsillectomy (per Dr L, but agreed on by everyone). It's been taking longer than it should and ds has been suffering, but it seemed things were finally moving forward. Last week they were working on finding an infusion provider and ordered one more set of labs to get a new baseline read on everything before the IVIG. So, we go into our appt today thinking we'd finally be knocking out the last of the details. I was also hoping we could talk about how to help him between now and then since this has been dragging on and he is suffering-- urinary accidents back, OCD bad, meltdowns/rages, checking/compulsions, tics, separation anxiety, needs to sleep in our bed, constant movement, sucking his thumb for the first time, etc.-- the whole cluster.

 

Instead, mid-appointment the doc basically called the treatment, and I think ds's PANDAS dx, into question-- he said maybe we should consider other things to help him with his "anxiety"-- like some play therapy (if you knew my kid this would seem even more ridiculous--his idea of play is algebra). Other things that were said during the visit include: his strep titers weren't raised, neither kid's were, he said their immune deficiencies were only on paper-- that they were not meaningful to them clinically. Somehow he now thinks ds isn't "episodic" and it "doesn't sit right" or "add up" because it's not "clear cut" (to him). But it is to us still-- it's still the same as back when it was clear cut and episodic to him. Sometimes ds has this cluster of symptoms, sometimes he doesn't. Having them is preceded by illness/infection, not having them comes about via abx and/or steroids. Nothing is different now--except we saw an immunologist who he recommended and we agreed to give a shot even though we knew she has a terrible rep re: PANDAS-- so maybe she's the one who planted the doubt.

 

This rheumy has said in the past he's seen the night/day difference in ds. But somehow now, with a new set of labs in hand that say exactly the same thing as the last set of labs-- he feels he needs to send the labs up to Dr L and talk to her about his concerns and maybe she'll say she's seen kids like ds and he'll be okay with it or maybe we should think about other things, or maybe she can give us a different abx to try and we'll just see, he'll call me after he talks to her... because it's just not as clear for him as it was with dd...

 

In the meantime, my poor kid can't sleep in his room or do school or any of his normal activities, can't play with friends, he melts down constantly, has frequent urination and accidents, can't go out in public, etc. A few nights ago he said to me, "I wish I wasn't afraid of things 7-year-olds aren't supposed to be afraid of-- I wish I was only afraid of the things most 7-year-olds are afraid of." and "I wish I wasn't different." and "Why is it like this? It's just so bad..."

 

I'm stunned, panicked, frazzled/freaked, frustrated (alliterative!), and now, as I sit with this, I'm just really, really angry. If the doc has concerns that's one thing-- no problem there, let's address them. But, to allow me to go on thinking we were working toward an agreed-upon treatment plan, while he was dragging his heels but not saying anything about the concerns he'd developed-- that's just not okay. If I had known this was happening, I would have been able to either address the concerns with this doc or jump ship-- either way I would have been an informed participant in my child's medical treatment plans. Instead I've just been waiting around while my poor kiddo has been flaring and miserable and losing even more of his life to this.

 

I suppose it's possible Dr L will call him back tomorrow and say (what I hope she does), "Why hasn't he been treated yet-- everything looks the same, and we agreed to do this back in December!" And maybe we'll go ahead as initially planned. But it feels like everything has exploded now-- this was a doc we'd really trusted. And I have no idea where we stand anymore.

 

Anyway, just needed to get that out-- thanks for "listening," friends.

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Oh, my! I'm so sorry that your doctor so cowardly pulled a fast one on you. Your child is obviously suffering. :( Sounds to me like it was the immuno consult that dissuaded him.

 

Why is PANS so damned hard to accept???

 

I hope Dr. L. can get things fast-tracked for your ds.

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Dunno why it's so hard to accept-- especially since this is the same doc that ordered my dd's IVIG for PANDAS, knows that it has returned her life to her-- and has been with us through both kids dx, dd's treatment, and on board w/ ds's up til now. And this doc sent us to Dr L for dx and treatment in the first place so I don't get why we're calling her again now-- weeks-months after the treatment was to have been provided-- only to ask if she really meant it??? Based on some labs that reveal nothing new?

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I know it is not as convenient- and may be logistically more difficult - but can you just do IVIG through Dr L?

There or at the hospital or infusion center?

And just not waste your energy on this doctor's change of heart?

I know it may be the lazy route (rather than trying to convince your doc) but frankly, I have no energy or patience anymore.

You will obviously find docs who look at the exactly same labs and see something totally different than another doctor or even change their own mind in an hour visit.

frustrating and disheartening.

I wish you the best.

Oh- also, be persistent on both doctors. (I know you know that!)

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Our Ped told us last week that he recently attended a medical conference and PANDAS came up as a point of discussion. He said that there were believers, non-believers and those in the middle. He asked me questions about who we were seeing and what their specialties were. I told him that doctors don't know enough about PANDAS and we were seeing those doctors willing to try and help.

 

Not sure where our Ped stands, he is not the point in my ds treatment - I have been. I told him that we were shotgun blasting for help; trying multiple treatments like abx and vitamin and supplements (already tried the psychotropics and SSRIs). So far abx have been the most help. I got the impression that he was trying to be point - he had his shot several months back and didn't act on it.

 

Perhaps your Ped was at the same conference and someone suggested that they ask us these questions.

 

My Ped backed down when I didn't back down on the questioning. He did tell me at our first appointment (after firing 3 other docs) that the ones that know best what a child needs is the parents.

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Yeah, I don't know what happened-- he was the one who referred us to Dr L and he's going back to her about this-- so that's better than it could be. And I gave him Dr B and Dr T's names as well. But I agree with you-- I'm not willing to waste time/energy convincing docs at this point, either. I don't see it as lazy, though, I see it as practical. My kid needs help now so my feeling is get on board or get out of my way.

 

Good suggestion about treating through Dr L, PowPow. It's on my list of possibilities. But if we did the treatment with Dr L, I don't know if our insurance could cover the treatment if we paid out of pocket for the office fees? I thought from when we did dd's treatment that wasn't a possibility, so I'm not holding out a lot of hope on that front. He's got an immune deficiency and practically speaking, we really need this covered because we still haven't been reimbursed the almost $8k that's owed back to us for dd's IVIG (by the IVIG provider that was paid by both us and our insurance-- another long story and thing I've wasted too much time on) and it's been suggested multiple times that he may require more than one b/c of the immune issues and his situation.

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NMama-

 

It is very likely that if you have the infusion done at Georgetown Hospital, insurance will pay. Check to see if it is an in-network provider for you (they accept many plans). Check with Andrea at Dr L's for scheduling. I would start looking at this as a plan B if needed.

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Oh I agree with you that it's not problematic for him to work his concerns out with our PANDAS doc. That's the only part of this that makes sense to me.

 

What really upsets me about this is that we've been carrying on with this charade of heading toward treatment since December only to find out that there's been some dragging of feet behind the scenes for reasons that were not shared with us until yesterday. If there are concerns, I need to know about them so I can make an informed decision about whether we should step back, re-evaluate and address them with this team, or move on and seek care elsewhere.

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How aggravating. I completely agree with you that people need to be upfront about their concerns and beliefs so they can be addressed, and if they aren't willing to look rationally at things, get out of the way.

 

It's an interesting balance, especially when you are an intelligent, informed, research-savvy parent. You have just 1 (or in your case, 2) patients--your children. and you will advocate for them all you can, and know them better than any doctor could. Yet you are at their mercy, as you don't have access or ability to get the tests or treatment you need for your child. Too much knowledge without enough power.

 

Hoping the ridiculousness of this ends for you soon and your son can get the treatment he deserves.

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