Bridging the Gap...

[MissionMama]

Hello my trusty experts,

 

I am an admitted lurker, very occasional poster, but always the appreciative inhaler of all of the morsels of knowledge out there.

 

I did attend the NW PANS/PANDAS symposium and my notes (and memory!) is sketchy in a few areas. Hopefully someone can help me fill in some dots here.

 

I suppose I have 2 questions - both relate to bridging the gap between teetering on the edge of backsliding...and continuing to heal.

 

Brief history:

 

DS 11, acute onset OCD 10/25/13 (we thought he had been poisoned, seriously out of his mind). Followed by weeks of depression, anxiety, mood swings - you know, the typical nightmare stuff. Pediatrician, immunologist, consult with Dr. K, dx of PANS (no strep trigger detected). 28 day course of cefdinir, slow improvement, but within 72 hours backslide, turn the pages back. First 5 day steroid burst...profound, he returned to school, returned to a functional level...honeymoon over within 2 weeks, results just didn't hold. 2 more steroid bursts, no hold. Immuno recommended a 6 month trial of IVIG to see if it would turn things around. (dx autoimmune encephalitis for insurance...no dice, considered experimental treatment. 3rd level of appeal currently) HD IVIG 2/14. Huge improvement within 2 weeks. HD IVIG 3/14. Less dramatic results, but had less to improve. We decided to coast and not schedule additional IVIG's due to risk/return at this point as DS has returned to school and for the most part, he is in a good space......but the sensory driven OCD is still pretty cruel, and at times it seems to be getting worse, as I know OCD does in general...the big creeping aggressive monster....

 

1) We have a scrip for 4mg of Prozac, though I haven't started him on it - Will this bridge the gap and help OCD, then when he starts feeling up to ERP that would be the next step (right now he would not be a willing participant)

 

2) ABX post IVIG. This is something we did not do - didn't think it was necessary because his trigger was unknown, as opposed to strep. But would they help take the edge off some of the behaviors? My notes are incomplete here about when abx should be used, though I do know they do more than just ward off infection....ie. inflammation

 

Ugh, I am so afraid we are sliding....sliding....sliding... Please chime in with SSRI experience!!

 

Kristi

[Mayzoo]

We tried low does zoloft, with minimal improvements, but no real negatives that I am aware of. We moved onto to lemon balm 500mg three times a day since it worked better for our kiddo and has a lower side effect profile.

 

I would definitely go with prophylactic abx for now, even if only to lower risk of future infections. Yes, they do reduce inflammation as well.

[MomWithOCDSon]

Since everyone's experience tends to reflect a lot of similarities while also being plagued with individual peculiarities, I know it can be difficult to know which step is the "right" next step in your particular situation. Hopefully, with some of us chiming in with our experience here, you can filter through and find what will work best for your DS.

 

Our experience suggests that ongoing abx can be very beneficial, so long as you keep the gut healthy with probiotics. Our "agent of doom" appears to have been strep (based on very high titers), but because our DS was entirely classically asymptomatic, I don't know that we'll ever know for sure. What we did find was that for the first couple of years of healing, every time we took him off the abx, his behaviors backslid . . . we'd put him back on, and he'd regain the balance he's achieved previously and then continue with more, though albeit subtle, gains.

 

As for the SSRI, there are some here who've had abysmal experiences with them, but ours has generally been positive. I think that, depending upon the PANDAS-savviness of the psych or doctor who's prescribing, I'd just be very careful about and mindful of the dosage. So many docs will prescribe a "low dose" by that "average patient" standard and not understand that our kids generally need an exceptionally low dose for ideal functionality; so there can be an inadvertent activation by too high levels of SSRIs. Just go low and slow on dosage, and if you see any negative behaviors that you can isolate being the result of the SSRI, back the dose back down or cease it altogether; any negative impacts should fade fairly quickly.

 

Good luck!

[Hopeny]

My DD10 has had Lyme, strep, myco - etc. She was doing extremely well until something sent her off the edge this January. She had a sinus infection but we had also just tried some new herbal remedies and antibiotics, I don't know what it was but it got really scary. Day by day I saw gradual coming back but strong OCD remained. In March I took her off everything, even probiotics, and continued to see gradual return to normal. Recently I decided to start Zoloft because she is 10 now (8 when this started) and I just really want her to have good childhood memories and also to take some stress off her, so she can succeed with the CBT. She had a bad rxn when we tried it once before but she was on Biaxin at that time which I found out interacts with Zoloft. We started her at a minute dose 12.5MG for 3 weeks and now have upped to 25 MG. I am definitely seeing that it is taking the edge off, I see some flexibility coming back etc. Will stay at 25 for 3-4 weeks and see how we do. I recently took her to a neurologist to evaluate her for a migraine. She is a PhD/MD with a special interest in ADHD etc. I discussed the entire history with her so she could get the big picture and while she said she is "on the fence" about PANDAS but will work with other doctors in an open minded way, her thoughts were that my DD is prone to OCD/anxiety etc and that it is exacerbated by medical conditions. I have always thought that a completely holistic approach is needed, and in my case I have widened the spectrum to now include a very low dose SSRI. I would like to give my DD every chance to beat this and for this time that includes giving it a try. Good luck

[ibcdbwc]

Ultimately it's trial and error. We tried Zoloft when DS was 8. This was before we knew about PANDAS/PANS. It sent him into full blown ADHD type behavior. He was racing around the classroom.

 

We then were on Zithromax for a good year. First daily and then 2X a week. When we tried to withdrawl, we'd see a backslide too. Eventually we had him off antbx for a good 18 months. But then DS12 got sick again severely. Our trigger was strep when younger, but now can be anything. Our biggest challenge is a continuing problem with sinus infections. We also recently learned that he has a high probability for Celiac.

 

During these last flares, we tried a smattering of Prozac. It caused a type of rage I had never seen before. I am not against SSRIs at all, in fact I really wish they worked. Lately I'm wondering if my DS has a neuro chemical response similar to that seen in bipolar as SSRI can trigger mania. So we will stay away from that class of drugs. But that is our specific case.

Edited May 6, 2014 by ibcdbwc