All Serum tests so far negative! Please help, disheartened.

[Hitman3161]

3 hours ago, MC2 said:

Very sorry for the long, frustrating road. I just thought it worth mentioning that antibiotics (with or without naproxen) is not sufficient to make a dent in many PANS/PANDAS patients (my 10 year old DS included). For us, high dose Solumedrol (steriods) infusions may be key. IVIG is hard to get approved by insurance, though that may also work. Something you could try is taking the pill form of prednisone for a 5-7 day course (assuming you can get a script for it) and see if there is any symptom relief (then again, not seeing improvement is not a clear sign of no brain inflamation - it could be after all these years you would need the much higher dose infusions to see improvement. As a data point, we tried all sorts of antibiotics, plus naproxen (aleve) for our son and nothing worked over approx 3 months; it was at that point that we moved on to high dose Solumdrol for 6 months. He is basically 90% better, the main remaining symptom is inability to concentrate on long form academic stuff (though drs tell us this can also be from the steriods, so we are happy to have recently had what we hope will be the last infusion - our drs recommended 6 months worth of high dose Solumedrol infusions/1x a month, plus amoxycillin, plus aleve FYI)

I wish there were more doctors with expertise on this throughout the world...

One last note, did you ever have joint pain? That is a symptom experienced by many PANDAS/PANS patients I believe, and is an indicator of auto-immune involvement.

Best of luck. Hope you feel better soon.

Thanks for sharing your story MC2, it's much appreciated. I only wish there was a greater informed consensus regarding PANS, inflammation, and neuropsychiatric symptoms too! It would make life so much easier. Unfortunately, as of yet, I have no official recognition of PANS through the conventional health care system (NHS) here in the U.K., so I'm very limited in accessing recommended treatment options. I've had correspondence with Dr K, who has kindly accepted personal care and follow up - I'll have to travel. He recommends a course of Beta-lactam abx for 14 days, if there is no response then of course subsequent follow up with prednisone. But I fear you may be right about the abx; IVIG appears to be the only curative measure at this stage, especially when you factor in such a late age. I'm aware that this will be expensive, but I'm hoping that enough progress can be made in the coming months for my family to fully appreciate both the implications and necessity for treatment, as well as the all important response to abx/steroids.

 

yes, I did and still do suffer from joint pains! It's an interesting point, but their mostly episodic. My sinuses are what trouble me the most, I've recently developed a primary cough headache as well.

 

I'm really glad you've found success, best wishes and thank you so much for your support! I realise I'm still at the start of this journey and with a long standing course of relapsing/remitting symptoms and progressive cognitive deterioration, any positive response to the medicine would be a dream come true.

All things considered, I can't help but think that my condition stems entirely from a dysfunctional immune system (very mild ASD as well), which makes IVIG all the more alluring!

 

 

Edited July 26, 2017 by Hitman3161