Thursday, November 5, 2009

P.A.N.D.A.S.

No, I'm not talking about the cute cuddly bears from China. I'm talking about Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococci Infections.
Got all that?

This is a rare neurological disease with little research or basis for treatment at present. I've heard this term batted around here and there over the past two years in which we have embarked upon biomedical intervention with M. However, about a year ago, I was no longer just hearing about it on various Internet boards, I was hearing it mentioned by our biomedical doctor himself...in regards to my child. There isn't one certain diagnostic test available for PANDAS, so naturally doctors are going to be a bit hesitant to throw it out there. I did a bit of reading on it, saw where maybe it could apply to M, and didn't give it much more thought. Then on my next phone conference with our biomed. doc back in Texas, it was casually brought up again. Hmm...maybe I should be listening to this? And this time it was brought up after M had become very sick and subsequently B & I were also diagnosed with strep.

Let's backtrack a bit here...

I am likely a strep carrier. I have had it about a zillion freaking times, the last (prior to January's episode) being before I turned 18 when I finally had the disgusting tonsils in my throat removed. I thought I was finally free and clear of the evil strep until getting it again earlier this year. Did I pass on some sort of predisposition to this bacteria to my child? It would seem that is quite possible along with the various other autoimmune conditions that run in my family.

Alright, now we fast forward to this crazy-ass week...

Today we discovered that poor M has strep. I am sincerely concerned that he has been battling this for close to a month! Aside from the unbelievable fatigue he's been experiencing, I've frequently noted to the other half that he has had a raspy voice. But without any fever (until the 104 he hit the past two nights), and with him continuing to have a good appetite, how was I to know? Oh, this is just absolutely one of the hardest things about having a nonverbal child!! You just can't realize unless you live this how nice it is to have your kiddo be able to tell you when something hurts!

We will put him on the standard 10-day antibiotic treatment and I will put money on it that we see great improvements in his behavior beyond even what you'd expect simply from someone finally not feeling ill anymore. This is one of the hallmarks of PANDAS, and something we have been able to attest to with M over the past couple of years...he most definitely gains mental clarity while on antibiotics.

Anyhow, I spoke to the new biomedical doctor we have here who ironically had brought up PANDAS to me just six weeks ago during our consultation. I think we may be very close to putting a label on at least part of what has happened over the past year+ to cause M to go into such a steep decline. We will wait about two weeks from today to do a blood draw to measure his strep titre and go from there.

If you're interested in reading more about this condition, please go to the PANDAS NETWORK.

Those of you who are closest to me and know about the exact changes we have seen in M will likely catch yourselves saying, 'Uh-huh, yep, and totally' to more than a few of the descriptors of symptoms. I know I just did.

And if any of you reading have a child diagnosed with PANDAS, please let me know. I would love to speak with you further.

3 comments:

Anonymous said...

Hi :o)
So sorry to read about your sons suffering !
I just found your blog by coincidence and wanted to let you know, that you´ll be able to "meet" with a lot of very helpfull parents to PANDASkids at www.latitudes.org/forums.
It might be very helpfull for you too, to visit Beth Maloneys site www.savingsammy.com or at facebook.
Beth Maloney kindly offers to mail adresses of doctors, who knows how to treat PANDAS.
And you might want to visit www.pandasfoundation.org too.
Best wishes to you and your son !
PANDAS_Denmark

J. said...

oh my, hope that the antibiotics help get things back to normal and that you find the info you are looking for.

Mama Deb said...

Thank you, PANDAS_Denmark. I truly appreciate the links you've provided. I will check into them.

Sitemeter