My dd is developmentally delayed due to seizure disorder and hypoxia at birth. She has happy and well-adjusted, basically normal aside from her developmental delays until February 2014 when all of a sudden she became severely anxious, constantly worried about whether she was going to die or get arrested, hyper-sensitive to sounds or things she saw, worrying about shadows, tip-toeing around the house in case she stepped on something bad, standing up then sitting down repeatedly. Her neurologist has done EEGs and MRIs which are all "normal" for her situation with a seizure disorder. She is currently on topiramate (generic topamax) for seizure control.
Recently we lost a Psychiatrist that we started to see last September. She got mad at me when I told her I thought it was PANS/PANDAS and she refused to see my daughter any more. She had prescribed cetalopram which as far as I could tell had no positive effect. Right around the time our dd started on that she started to experience leg spasms which we thought might be caused by the medicine so since it did not seem to be lessening her OCD we weaned her off of it and she still has leg spasms. For a while we were also giving her clonazepam when she seemed extremely anxious and couldn't sleep but we weaned her off that as well because it didn't seem to do much either and we read some bad stuff about it on the web.
We have been using fish oil, turmeric/curcumin, Vitamin D, CALM (a magnesium supplement), Tranquilix, and ibuprofen to try to help relieve the symptoms but can't really say that we see any real improvement. Maybe it is helping keep worse stuff at bay, I don't know. But I don't really know what kind of doses people find effective, if at all. I just ordered some oil of oregano in capsule form which I thought we would try.
Last week she seemed to be coming down with a bug of some kind so we got her in to see her GP. Her neurologist was willing to consider PANS/PANDAS as the diagnosis so she said ask her GP for a strep test the next time she saw her. So we did. The throat culture came back positive for strep. It sounded like good news to me. They gave her a shot of antibiotics that I'm told is the equivalent to a 10 day course. My wife says she thinks it was penicillin. This was last Wednesday. I was really really hoping for signs of improvement but mostly things have been worse than ever. She has had several of the typical PANS/PANDAS symptoms since last February but never problems with bed-wetting or food restriction but since the shot she has wet the bed twice and plays around with food on her plate until we tell her which bits to eat.
From the PANS parent symptom scale part 2:
1. separation anxiety (5), general anxiety (5), unfounded irrational fears (5), panic episodes (3)
2. emotional lability (3)
3. Increased irritability (0)
4. behavioral regression (3)
5. difficulties in attention, concentration or learning (5), loss of academic skills (3 - though she was already developmentally delayed)
6a. Sensory symptoms (5)
6b. Hallucinations (3)
6c. Motor symptoms (4 - she sits and stands repeatedly and she walks very haltingly because of worries about what she is walking on)
7a. Urinary symptoms (4 - just recently)
7b. Sleep disturbance (5)
7c. Dilated Pupils (5)
So I hope some people here can give me advice.
1. She's not a child anymore - she turned 21 just before the sudden onset last February. What is the latest word on adult-onset PANS/PANDAS? Is there such a thing?
2. What is the typical response of someone with PANS/PANDAS when they have strep and are given an antibiotic? I guess the presence of strep itself may be why the symptoms got worse and maybe it takes a while to get better?
3. Is the antibiotic shot something anyone here has experience with? Does it work better/worse than a multi-day course?
4. Are there others here from the middle-tennessee area? Is there a support group of any kind in this area we can join? Does anyone have experience with Dr Daniel Kalb?
5. How much Turmeric, Fish Oil, Ibuprofen, Oil of Oregano, Vitamin D or other anti-inflammatories should she use? Is there a "how to" guide anywhere?