disappointed / pissed by neurologist app't -- what should I have expected?

[wisdom_seeker]

Well, we met with the local pedi neurologist, and I was disappointed -- and then pissed and worried.

 

First, he hadn't heard of Dr. Thienemann, one of the authors of the PANS consensus committee, and a founder of the Packard (Stanford) PANS/PANDAS clinic. (She gave the PANS dx). And this neurologist did even fewer of the basic neurological tests that ds16's pediatrician did years ago. And based on that he concluded that:

1. there was no peripheral neuropathy (duh)
2. no problem with his thalamic neurological system (whatever that is),
3. and no generalized pain syndrome, and thus no reason for his sensory hypersensitivities

DS16's problems "originate in the upper cortex", in other words, "that this is an anxiety-driven issue, possibly OCD-type thinking", and "best treated by his psychiatrist".

 

He knew that we'd come with a diagnosis of PANS, still, when I asked for more of an explanation, this neurologist simply looked at me and answered:

 

"I just did".

 

Really? This from an MD?

 

He didn't even look for choreiform movements; and he made no mention of the basal ganglia, the sensory motor loop that Dr. Thienemann had explained to us.

 

I'd find it funny, except that he said to folow up with the psychiatrist, and that he'll "put a note to that effect in ds16's electronic record," Though I had been told by another MD not to expect much from this neurologist I am concerned that this dx will ruin my son's (and my) credibility.

 

We've already done CBT for a few months with NO success, (unlike other times he couldn't figure out why he's so anxious, and can't be talked out of the sensory hypersensitivities he has). And anti-anxiety meds hadn't done anything. That's what we'd found years ago with my older PANDAS son, and what made us start looking at PANS for this kid.

 

So, what would you do with this? And what should I expect from a good neurological examination anyway?

[wisdom_seeker]

So I should've written, ds 16 doesn't have tics. He still has light/sound sensitivity (but I'd stupidly forgotten to mention it), and the sensory hypersensitivities, super high, inexplicable anxiety, fatigue, sometimes brain fog, restlessness.

 

Last week he had choreiform finger movements when in the stressed arms out position. But now he's been on abx for 18 days, and 60mg prednisone for 4 days, and today had no choreiform movments, and fewer sensititivities. So he's getting better!!! No thanks to the CBT he'd had since August -- he was still getting worse till two days ago.

 

I can imagine all the neu

[MomWithOCDSon]

I'm sorry, but not surprised. So few doctors are willing to look outside their own little boxes and as long as the term "rare" is tossed around for PANDAs/PANs, I fear we're all going to face this sort of skeptical, "don't believe everything you read on the internet" kind of response. Our pediatrician who, in the end, helped us a lot with abx and repeated renewals, remained skeptical of the PANDAS dx all along and even more skeptical of some of the "PANDAS specialists" who were recommending treatments like IVIG and plasmapheresis as she thought those were "extreme measures" for a condition that was still subject to controversy and ongoing research. She recommended we see a neurologist, also, but I'd gathered so many horror stories from folks who'd seen the more prominent neurologists and infectious disease doctors in our area, I couldn't bring myself to take DS to one.

 

I don't know what you can do about any notes she's putting in your DS's electronic file, except to maybe ask your other doctor to make his/her own notes that openly contradict the whole "psychiatric" bent of the neurologist's findings?

 

What tests were actually performed? MRI? Spec scan? PET scan? Can you take those to another neurologist for a second opinion and, frankly, select one that you KNOW in advance is not oppositional to PANDAS/PANs from the get-go?

 

Finally, as for CBT and other psychiatric interventions, I will offer that my DS has definitely benefitted from them, in addition to the medical interventions by way of abx, diet and supplementation. So I wouldn't necessarily dismiss it, especially for a 16-year-old who's intellectually prepared to take in the information and coaching. But it can be a lengthy and laborious process, for sure. I just find that implementing the tools and strategies that come via the CBT help my DS (and us, as his family) work through anxieties and OCD behaviors when they crop up now and again in response to an immune event (virus, allergies) or stressful situations. Perhaps now that your DS's medical condition is improving a bit by virtue of the abx and steroids, he might be more receptive to what a good CBT therapist could bring to the table?

 

Sorry again, but hang in there and follow your gut!

[qannie47]

I had similiar experience with hospital/neurologist. In fact, they called the psych unit during our stay and had me evaluated under the pretence of examining my son. Impressive. Fortunately the psychiatrist was discerning enough to see that I was not a nutjob and that my child was sick...

The neurologist was about as cocky as the one you experienced. His works were, "Why don't you take him to talk to someone, see how he feels about things....?".

 

My advice, move on and forget the whole thing happened.

Sorry you had to experience that.....

[rowingmom]

Yes. Move on.

 

You don't have time to feel upset by what this doctor has done - don't let this distract you at all from finding the proper answer.

[trintiybella]

I agree with everything the others said. It is probably not the last time you will be in this situation. One of the hardest things for me has been the unbelievers! I keep trying to ignore them and move forward. At times it's so hard, I know. Be strong. Your the mom and your correct in what your seeing. How about trying this Dr. L. that people keep tallking about???

[Mom23boys]

If your son is getting better on prednisone and abx his symptoms are either caused by an infection or inflammation or a combination of the two. I would continue down that path for the foreseeable future and then perhaps reintroduce CBT when he is not in a flare. Have you done any blood tests to try to determine the source of the infection or trigger? I am getting ready to run (if I can get my husband (doctor) to order it - we have no pediatric support) Dr. T's blood panel, or most of it, to be sure we are not missing anything since Dr. L really does not do much testing outside of strep.

[WorriedDADNMOM]

Wisdom....Move on.

 

I really recommend NOT PAYING!!!!! If you not happy with the service or appt.....treat it like a meal or any other service.....don't pay the bill.

 

Explain why to them and definitely move on. Try to find a pandas friendly doc/Integrative Pedi in your area.

 

Best of luck to you!!!!

[emst]

So not surprised by his response! Sorry!

[nicklemama]

I hate to be an echo but......move on. I was told by a neurologist that my son's sudden, dramatic change was due to my lack of firm and consistent parenting. I took him there because he was so suddenly not himself in such a dramatic way, I thought he might have a brain tumor. It was the first of my many disappointments with doctors.

[wisdom_seeker]

Thank you all for your words of support. And also the advice to just move on.

 

With your support, I don't feel so alone, and I think I have moved on.

 

It also helps that one of our MDs said that he wouldn't have had any expectations for this particular neurologist -- that he's OK for textbook cases, but not for anything complex, anything that requires 'out of the box' thinking, the sort that both my sons seem to need.

 

I've now gotten a referral to one of the child neurologists who work at the PANS/PANDAS clinic, and hope for a better outcome. I am a bit apprehensive, because he just isn't a textbook case.

 

Now (after 3 weeks of abx and 2 weeks of prednisone) he doesn't have the choreiform movements any more, the sensory defensiveness is a bit better, though rubber and water are still his enemies. But mostly, his symptom where his brain thinks that his other hand must be the actor if someone touches his arm is so weird (e.g. L hand if touched on R arm). Especially the part where the supposed "actor" hand then disappears (and then fades in and out) of his brain's body map. The shrink still thinks it's part of the ganglia driven sensorimotor dysfunction, but I still worry it will make him labeled a crockpot.

 

So I hope that the neurologist can still see some signs that say "he's telling the truth". And that she will order the set of tests to confirm the Dx and to figure out what the trigger(s) might be.

[pr40]

i don't get one thing, why did you go to the neuro in the first place. You had the diagnosis. is it to be get tests done to rule out something? what do you want to rule out? and why? what's is the new info you are looking for?

why not do tests through your regular pandas friendly dr?

[wisdom_seeker]

Just as a f/u, last month we saw Dr. Brown in Pleasant Hill, CA, a pediatric neurologist who is also associated with the PANS clinic at Stanford.

 

Completely different reception. She wasn't bothered that the presentation isn't classical, especially given he had responded to prednisone, and there was a positive family history (DS21 and my brother both had sudden onset OCD/anxiety, DS21 was Abx responsive, and my brother's (long ago and far away) had been associated with many strep infections.

 

Dr. Brown agreed with the PANS Dx. Given that, her main goal was not to explain what's happening in his brain (oh well), but to get DS's PANS treated -- to get him into the Stanford multidisciplinary PANS clinic, and probably on IVIG.

 

I'm OK with that, though concerned about how booked out they seem to be, .... and how many more tests they'd require before doing an IVIG. I'm waiting for them to review my intake questionnaire and Dr. Brown's referral, and don't yet know how far out they book.

 

And I wonder if/how I might get most of the tests done before I see them. We have a brain MRI scheduled at Stanf for 2/9 (with sedation), and hope to lots of testing for infectious triggers done beforehand as well.