Neurologist says today: it's PANDAS

[SSS]

I think I'm going to crack my head open and let it spill out on the sidewalk.

 

This is the same neurologist at leading metropolitan hospital who told me a year and a half ago at our last visit:

'I've got 2,000 kids exactly like yours throughout the city.'

'Oh yeah', I said, 'what do they have, what are they diagnosed with?'

'Autism' he said.

 

So today I go back saying all the trials of pharmaceutical prescriptions we tried after seeing you have paradoxical effects:

SSRI- ramps up OCD to crippled.

Stimulants- ramps up OCD to crippled.

Risperadone and your Abilify: manic, pacing, speed talking, poor academics, give me food! Eat!

no scary rages, tho.

 

Go through our history (again) although I never say the word Lyme, because that's just crazy talk, right?

 

'It's PANDAS. You need a PANDAS specialist. It's the immune system.'

 

I went there to see if we could do a trial of lamictal. I didn't get it. He said I needed a child psychologist for that-meanwhile I've got buckets of risperadone, which I've come to absolutely loathe.

 

We have an appt. with LLMD next week after long break. Going to retest Lyme, and ask for an OAT test, beg for Biaxin since that was our last miracle. Appt. in 2 weeks with our specialized Ped. who will probably let us try lamictal.

 

My take away?

I am trying to stay in TODAY.

Just today.

Do what we can as it comes, to try and make it better.

 

And truly, I thank every single person who has gotten the word out on PANDAS/ PANS.

Although these Dr.s have no idea what to really do about it (and who has the single answer, really?)

At least it is RECOGNIZED. At least we are now saying words like

immune system, gut microbes.

So, God bless you.

 

And I plan on upping my ACN membership since hey, I really do have a PANS kid ;-)

[Dedee]

Well there you go. Don't you just love main stream medicine? Has never helped us not one little bit. I applaud your out look. Stay in the moment and be glad you have been blessed with good common sense which is more than most physicians have.

 

Dedee

[LNN]

S - You know how some people have underwear with the days of the week on them? I'm going to get you some that have diagnoses of the day (week/month/yr.) on them! ASD, PANS, 2 pairs that say LD (the baby blue ones will stand for learning disabilities and the green ones will be for lyme disease), OCD, GERD and then one that is just plain white with no words - and will represent the time when no diagnosis is needed because she (and you) are healed.

 

You've been thru so much and I so admire your ability to get up after being knocked down. With 5 years backward perspective, you're absolutely right. Be in the moment. With that comes so much. You have amazing children, an awesome husband and a depth of spirit that inspires. Stay strong. xoxox

[Mayzoo]

Well, it is sorta nice when the doc finally catches up with what you already knew.

 

Our last neurologist that had been seeing my kiddo for ten years always diagnosed her with a behaviour disorder, NOS which I believe meant he feels I am a bad mother. Even her screaming (vocal tic) while she was asleep was caused by bad parenting .

 

He is the doc who found her Chiari, syringeomylia and arachnoid cysts, but those are all "asymptomatic" of course. Her true problem was her mother *sigh*. We only saw him because he was a primary as a means to see a doc in the eye clinic at the hospital we were at. Now we are far far far far..................away from him .

 

I fear there is no hope for our old doc to ever get out of "the cave", but I am glad many more are finding the cave opening and venturing out into the real world. Congrats, as you likely helped him to see the opening somewhere along the way. Pat yourself on the back, relax today and pick up the torch again when you can.

Edited June 6, 2014 by mayzoo

[SSS]

God I love this place.

 

After I posted this, went about my day, and this morning's appt. started to catch up to me,

and despite my 'seize the moment' resolve,

I started to feel like I was all alone (again) fully responsible and isolated on an island.

 

Then I logged back on and read the replies.

Thank you--

And I did sign up for premium membership-

the very least I can do, I figure.

[Hopeny]

LOL I almost never say Lyme to most doctors unless I'm in a happy playful mood and want to amuse myself with guessing the reaction.

[qannie47]

SSS, I am very glad to hear that your doc has begun to open his medical mind! I am not surprised. My kid's peds doc (the one whom dx him originally), reported about 8 months ago that Pandas was covered at a standard medical convention. He said that they took a raised hand vote on believers: Over half raised their hand. He was happily shocked. That was 8 months ago. I can tell by the posts here that indeed Pandas is finally being embraced!

 

I wonder how long it will take the insurance companies to start raising their hands????

[tu4four]

Mayzoo---don't want to hijack the post. Can you tell me how the arachnoid cyst business plays in? (I cannot clear my message box until I can get home and have some time to play with the computer at home). Dd12 has a couple, found by our neuro, who also dismissed them as no big deal...even a cyst on her pineal gland. I would have thought that might be important, but....