Never thought we'd end up here, but glad this forum exists. Let me say that my heart goes out to so many of you parents! As trying as our experience has been, I know there are others who fight a war almost daily. You are to be commended. I've found a new group of heroes.
PANDAS practically leveled our lives like a bomb approx. 3 months ago. Literally overnight, our son developed pronounced motor and verbal tics, severe anxiety (including separation anxiety), OCD, ADHD...we were absolutely confounded.
I know information is king in the battle against this disease, so I'll provide a brief medical and case history. The experiences of others have often provided the most up-to-date and reassuring information we were able to find precisely when it was needed most. My hope is that what I share might do the same for another.
As far as any familial connection goes, we have a very few (maybe 1 or 2) instances of mild OCD and tics on my mother's side. Counting steps, high need for organization, repetitive clearing of one's throat...nothing to write home about. None of us ever gave it much thought. We thought it was just a little eccentric. Then, boom!...overnight. We couldn't have been more bewildered.
We were fortunate to have one of my wife's friends mention something she saw on TV about sudden onset tics, OCD, etc. Something called PANDAS. The short story is that our pediatrician was somewhat familiar, willing to do a little research, and knew what to say to the head neuro at Children's Medical Center, Dallas to get our son admitted the day following our visit and only one week since the onset of his symptoms. Didn't mess around with abx, went straight to IVIG. A couple of severe terror/psychosis episodes immediately following IVIG and concern about a small lesion on the frontal lobe of his brain (MRI) produced another admission and 5-day course of IV steroids followed by a 5-week tapered oral dose. Had a spinal tap and tons of blood work to rule out every other possible condition (except Lyme, I think). Symptoms came on the day before Thanksgiving. First discharge was 12/3. Second discharge was 12/10. Gratefully, we were able to start school half-time 2 weeks ago and full-time doesn't seem to be far away. The tics and anxiety were the most pronounced and which kept him away from school. Fears, bad thoughts, and the kid would stand outside the door while you were doing your business. He's 15 years old, a late bloomer (prepubescent), but had little or no history of Strep. The causative infection, however, was a severe Strep infection that he acquired from a root canal procedure that didn't go too well and produced pronounced swelling at his lower jaw even though he was on prophylactic abx. No sore throat, no high fever. Was successfully treated with a 13-day course of Penicillin. He is 95%+ back to his normal baseline across all his symptoms. He can even be away from the family for extended periods of time, although he doesn't like to be completely alone. We just couldn't be more grateful.
It was very trying for him. More than once we dealt with tears, saying this thing is controlling his life and he just wants to be normal again. Just about the worst days we ever experienced as parents. You all understand.
Looking back, however, we can say that of our four children he has always been the most challenged health-wise. It was always him that ended up in the hospital (Rotavirus, croup, aggravated asthma). Interestingly enough, about 2 years ago he started coming to us, a few times in tears, with anxiety about some of the weirdest scenarios we'd ever heard. Just thought it was part of his unique experience with adolescence. Neither my wife nor I had had any experience with anything similar before and a little counseling and prayer over a few days seemed to do the trick. Guess that was the beginnings of our PANDAS experience. If the kid ever had Strep before, we couldn't remember and it wasn't bad enough to seek medical attention. Who can say for sure?
Post-treatment, I can say we've had our share of ups and downs. A couple of pretty scary terrors/psychosis, tic exacerbations, and just general not doing so well. These have been temporary (half-day at most) as one of our saviors in all this, Diana P., said they would be. But we have seen steady, deliberate improvement. It is something should instill hope in every one of you out there. Healing is rocky; more for some than others, but it can and does happen!
As we enter the "rest of our lives" period, we don't know exactly what we will encounter, of course. He's on daily Penicillin VK (500 mg), Ibuprofen, and vitamins. Not exactly on track with most of what I've read about others, but it's working for us right now. We remain vigilant and always will be.
That's about all I can think of for now. Will probably add more here and there as appropriate.
Questions don't bother me at all and I haven't come across any that were too personal. I cringe at every new case I hear about, but I'm committed to doing my part and helping in any way that I can. No one should have to go through this. I want to see this disease eradicated!!!
