P.A.N.D.A.S. - Eureka?
Mama Deb | Friday, November 6, 2009 at 2:00AM No, I'm not talking about the cute cuddly-looking 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 biomedical doc this past January, 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 we've had where M's behaviors have been through the roof...
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.
We recently switched to a local biomedical doctor 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.
Mama Deb blogs at This Is My New Normal.
PANDAS, autism, biomedical intervention 
Reader Comments (6)
My son has PANDAS.
I've written some about our expeiences on my old blog:
http://michelleoneilwrites.blogspot.com/search?q=PANDAS
We have basically abandoned the Western Medicine route(since they are still just guessing) and are going with 100% organic diet for him and Chinese Medicine. Giving powerful long term antibiotics seemed counter intuitive to us for a child with an already weak immune system. We did not want him to be antibiotic resistant should he get a super bug down the road. While IVIG might help, we did not feel it would get to the bottom of what is causing the problem in the first place. Plus, it is risky (40 blood donors required per infusion) and expensive(thousands of dollars per infusion), and not covered by insurance for us.
Our Dr. of Chinese Medicine has given us meds that treat his sore throat flare ups overnight. They don't wipe out his good flora. She feels genetically modified foods are a big culprit in my son's autoimmune issues. They use antibiotics in the "modification" process, which then leach out into the food supply. Metabolically fragile kids can't handle it, and it wreaks havoc on their immune systems. Unless it is organic you don't know what's genetically modified in the US.
Every family has to figure out what works for them. Good luck on your quest and feel free to e-mail me if you like.
I finally had a chance to check out the PANDAS Network link you have above. Very informative. Thank you for posting it!
Thank you for letting me know about your son and the treatments you are pursuing. We are checking M's titers in a couple of weeks and will go from there...lots to research between now and then! I'm really enjoying reading all about Jingle, by the way! I fostered dogs through a rescue group in Austin, TX for 6 years and had a couple of dogs I thought would have made brilliant service dogs. I definitely envision a dog like Jingle in M's future :)
Hello :) First post here. My son has PANDAS..just diagnosed this year. And, yes, my child improves DRAMATICALLY on Zithromax. We are about to start long term treatment with this...using when symptoms start to arise. I never knew why my son's behavior would plumet so quick...now I know. He loses eye contact, language, develops physical and vocal tics, is very inattentive, etc. Basically a COMPLETELY different kid. I will continue to give him supplements to help his immune system and will have no problem treating with antibiotics as needed. My cousin has a girlfriend who developed I think it was Rheumatic Fever as a child, which of course, turned into strep. She has to take antibiotics every day of her life. Her hands will fly up at times, so she will twirl things to prevent this. She is a beautiful young lady, active in her sorority, going to college to be a school teacher, etc. The antibiotics help her be able to live a normal life, but I wish she would also work on her immune system. Also, the boy in Saving Sammy who had PANDAS had to do long term antibiotics for awhile. I know they are not good, but boy is my kid different on them. I am going to try treating with Olive Leaf Extract (1000 mg daily) after our next round of Zithro to try and ward off future strep attacks. I also plan to give Uva Ursi 2 wks on/ 2 wks off to help with bacteria. I also added an extra probiotic. Also, LDN is supposed to help with controlling PANDAS. Hope this helps!!!
Hi there,
I have a PANDAS child and we have had it since 9 months. I have a blog about our situation. We have just returned from doing Plasmaphoresis and are in crisis over here. I haven't had time to update the blog about the procudre yet as we just arrived home last night. But I will get to it. However, the blog details all of the behaviors and all the situations we have been going through for the past year.
Like every parent on this site who has a special situation, PANDAS is a horrible disease.
Thank you all for your input. I will check back with you all once we have a better determination of whether this truly is PANDAS we are dealing with, but so far, the antibiotics are helping immensely!! My husband took a whole series of photos of M during a walk to the beach yesterday and he was 'present' and smiling at the camera in each one...we haven't seen that in eons.