Confused about the definition of Pandas

[EAMom]

Yup Jennifer. When we were first suspecting PANDAS, several docs tried to tell us it couldn't be PANDAS b/c our strep titers were low (even though we had positive cultures and everything else!). I wouldn't say all PANDAS kids must have "sudden onset", just like we now know not all PANDAS kids will have "high strep titers".

 

Certainly, it is the kids with positive cultures/sudden onset/high titers/typical symptoms that are easier for docs to diagnose, but unfortunately not everyone is going to fall into that neat little box.

[reactive]

I've been reading a lot about PANDAS lately and I'm a bit confused about it. Most articles state "a sudden onset of behaviors (i.e.tics/ocd, etc.) after a strep infection. Does this mean that the PANDAS actually created these symptoms for kids?

 

My son has several DX's including tourettes and ADHD but he's had it for a while. We've noticed problems with our child since the age of 2. In his case, are these 2 seperate entities and PANDAS might just be exacberating his conditions? His problems did not come on suddenly however sometimes they become much worse suddenly. Andrea

OK, I feel like I would like to chime in here too. I respect Diana's comment, she knows so much. On the other hand, my ds9 is one of those kids that as you say, does not fit into the "neat little box". My son had such a severe and debilitating onset of symptoms at age four, my husband and I both had to stay home with him for weeks and at times we had to send my infant son to the grandma. I did not do any scoring as you say, but I would call that a sudden onset. At the time, when I looked back, he did have a tic here and there. But, I think it was me being observant, to be honest and not to toot my own horn. But I know a mom who had no idea her son was having tics until I described what my son was doing. Our neurologist at the time suggested PANDAS (which is where I learned the phrase), but then later stated he could not have it as his ASO was not elevated. But, they did not check him for strep as he was checked for strep at the ped office 2 weeks prior. I really feel his strep possibly could have been missed. We have had a lot of strep in the family over the years. Heck...my son was at my mom's 2 weeks ago when sick and 2 days later my mom came down with impetego. How does a 60 year old woman come down with impetego??? She had never had it before... Our doctor is understanding and gives my ds9 antibiotics in 10 day courses liberally, but we are not on daily. I want to see Dr.K first. However, back to when my son was four....anytime I question whether or not my son could have PANDAS, and that happens a lot as I am just not SURE, I remember that my son, at his worst, also had horrible leg and hip and knee pain...I would have to CARRY him to the bathroom to pee...it would come and go just like the other stuff, the staring and being "gone" ect. And so, whether strep IS the cultprit or not, we can sometimes find it and sometimes not, you can't tell me a kid with "regular" OCD and tics would get joint pain.

 

As you can see , we are in the opposite side where we can pinpoint the sudden onset but could not find the strep at the time. So another thing to consider. Also, I would like to point out in our case, that it did take a few months at age four to get back to baseline as this was 5 years ago and did not get antibiotics or IVIG or ANYTHING. So, while I admit until I see Dr. K and he can say for certain this is PANDAS, if it is or was, my son got back to functional level on his own but it took a few months. I don't want to offend anyone here who has done IVIG, but I do see a timeline with some kids who did IVIG and got better, back to baseline, and those kids' timelines match my son without the IVIG. So I do wonder if some kids would have improved on their own without it. I am just playing devil's advocate again as this is a new science. I just wonder about it. My son does great in summer but not so good December thru March. One of the mom's of a daughter in my son's class told me on the phone last week her dd had strep last week and she can't get rid of it, she has had it X3 over last few months and her tonsils are already out. This is a kid my ds9 is in class with five days a week. He is really ticcing and obsessing now...neuro gave us a Rx for risperdal on Friday but I'm not going to give it to him.

 

Sorry this is so long but I wanted to add.

[britmom]

Santi

I understand your confusion. I would like to briefly tell our story.

 

Our DS9 developed tics when he was 4 years old. The first tic came (stamping his foot on the ground), and a week or so later it was joined by another, then a week or so after that, a vocal tic. I would call these tics rather than OCD behaviors. The TS expert that we saw at Childrens Hospital called them tics. In the weeks following that, he developed some separation anxiety (more than usual), and started to show some sensory issues. He became easily frustrated and aggressive. He was diagnosed with TS. We have no family history of this kind of disorder or anything similar. I became aware of PANDAS a few months after this, but dismissed it as a possibility because he had not shown sudden, overnight onset of OCD type behaviors. He had also never had strep throat. For 4 years we lived with the diagnosis of TS and believed that all we could do was reduce as much as possible the triggers that we had come to know. Whilst he would be better at some times than others, he was never as good as before his tics started - only varying degrees of OK to bad.

 

The funny (?) thing about this is that I got talking with the mom of a student at my son's school who has PANDAS (this student is more the classic case of sudden onset) about 1-2 years after my son's tics had started and we chatted often about PANDAS. I never once believed that it applied to my son, because I always thought of sudden onset OCD. It took almost 3 weeks for that student to improve on abx. Only 4 months ago, I saw something on the TS forum and it referenced PANDAS and Tourette Syndrome in the same sentence. I happened to ask our enviro doctor about it and he happened to know of a ped in our city who had an interest in PANDAS. It now appears that our son is a PANDAS case. I am still struggling to believe it. He improved after a month on high dose Augmentin, and he also changed significantly for the better after a steroid burst. He has a streptozyme level of 200 (should be 100 or below). His CAM Kinase was 130 (blood drawn after 17 days on Augmentin). He is currently on Azith twice a week.

 

Based on our case, I feel strongly that no-one should be discouraged from looking into PANDAS because the onset of symptoms was not 'sudden'.

 

Sue