How long to treat?

[JoyBop]

I apologize if this question has already been beaten to death, but we still don't have a PANDAS dr. Or plan to see one soon as we are still exhausting local options. How long did you all treat initial onset of PANDAS? My DS has been treated now for 20 days. Major OCD and panic attacks have subsided but we are left with intense motoric hyperactivity, rages, and still some quirkiness and irrational fears. We are doing CBT and still seeing a psychiatrist. He is still not "right". How much I'd this will go away with abx? How long do we stay on? If anyone has any BTDT advice please lay it on me. Right now we are not thinking about prevention, just initial treatment. We may deal with prevention later but feel we need to treat the best we can first and see where that leads us. (DS has gut issues and is at risk for c-diff. He is also allergic to several abx so prevention can't be taken lightly)

 

I also want to hear your experiences Re getting back to baseline. Are your kiddos ever the same as they were prePANDAS again? Or are we dealing with a new baseline and need to adjust our expectations?

[nicklemama]

This started in 2009 for my son. He was diagnosed one yr later and treatment started.Nearly 4 yrs later, we are still treating. His initial treatment with treatment dose abx for 7 months, followed by IVIG #1 and another month of treatment abx, followed by 17 months of prophylactic daily abx, interspersed with treatment dose abx when he was sick and flairing, ivig#2 after pneumonia, treatment dose abx again and he's still on treatment dose abx 6 months later. Found ehrlichia, anaplasma and babesia infections. Treatment abx for many, many months in his future.

 

I know this may not be what you want to hear but its our reality. Others have different journeys. We have not ever been back to prePANDAS baseline. He's doing really well right now.

[bigmighty]

DS has been in remission for over one year. But when we, just recently, attempted to reduce prophylactic antibiotics, the symptoms came racing back rather quickly. We have ramped back up the antibiotics, and he is stabilizing. But, so far DS is 2.5 years on antibiotics and no end in sight.

[LNN]

I apologize if this question has already been beaten to death, but we still don't have a PANDAS dr. Or plan to see one soon as we are still exhausting local options. How long did you all treat initial onset of PANDAS? My DS has been treated now for 20 days. Major OCD and panic attacks have subsided but we are left with intense motoric hyperactivity, rages, and still some quirkiness and irrational fears. We are doing CBT and still seeing a psychiatrist. He is still not "right". How much I'd this will go away with abx? How long do we stay on? If anyone has any BTDT advice please lay it on me. Right now we are not thinking about prevention, just initial treatment. We may deal with prevention later but feel we need to treat the best we can first and see where that leads us. (DS has gut issues and is at risk for c-diff. He is also allergic to several abx so prevention can't be taken lightly)

 

I also want to hear your experiences Re getting back to baseline. Are your kiddos ever the same as they were prePANDAS again? Or are we dealing with a new baseline and need to adjust our expectations?

 

My son was on antibiotics for 10 day treatment courses for his first 10 months of illness. Every time he came off them, he regressed and within 2 weeks, was back on them. We suspect chronic strep in the crevasses of his tonsils or adenoids. He had a T&A and only then did we see major - and longer lasting - improvement. But he kept regressing we found ourselves resorting to more and more aggressive treatments (first steroid tapers, then plasmapheresis, then IVIG). He would improve, then regress again. After 2 years and $$$$ later, we found lyme disease.

 

Lyme was both a huge blow (we were already low in funds and spirits). Yet it was also the turning point. From that point, we had ups and downs, but sustainable gains. It's been 4 1/2 years but for the past year, he's been 95%. He's been off abx for 2 months now and except for some tiny OCD - which is likely habit more than true OCD, as it's not fear-driven - he is better than baseline. I say that because he was stricken with full blown Pandas at the age of 6 but before that, we'd seen several flares that we didn't recognize but were likely Pandas in toddlerhood. So he was periodically this unexplainable child and we feared his sudden changes. Now, he and the family have tools to deal with things quickly and we are stronger, healthier, closer, better. It's a new, higher baseline.

 

But don't let our stories scare you. There are a few families whose kids have healed much faster and there are those who are off abx and use them only at the first sign of an episode. They just don't need to visit the forum often anymore. I don't believe there is any "cure" for pandas other than time (it seems to be less of a problem as you approach adulthood) and solid health. So as long as your child is still a child, you will always have to be vigilant and may need to stay on some sort of antimicrobial regimen for quite some time. But there are natural antimicrobials you can look into once it's time to enter the prophylactic stage.

 

As for C-diff, there are supplements that fight candida - garlic, olive leaf extract, grapeseed extract? and others - as well as diflucan and nystatin.

 

While 20 days of abx is not very long in our community. But if you're still seeing major issues, it's possible the infection isn't gone. You can consider different abx, a combo of two abx, testing for different infections (mycoplasma, lyme et al). I realize you're limited in choices - my DD is allergic to the penicillin and cephasporin families of abx. But a combo of azithromycin and bactrim helped her greatly. The other thing some of us have found helpful is a subject called methylation, which looks at unique genetic roadblocks that keep your body from maintaining neurotransmitter balances, especially when the body has to divert resources to fight an infection. Using specific supplements to detour around these roadblocks has, in some kids, brought major steps forward in both behavior and gut issues.

[Hayley]

We did not get back to baseline with antibiotics alone, but did with IVIG (high dose one time). We're now almost six months post IVIG and seemed to have gotten through strep and a fever virus ok. She is, however, still on full dose abx and will be for some time. We switched the abx from augmentin to omnicef when she got strep. I think the plan is to switch back after 30 days.

[rowingmom]

DD11 presented to our LLMD with all of the PANDAS symptoms except OCD. She had significant motor/vocal ticcing and her symptoms were exacerbated by strep infections and declined with strep treatment. We were not able to access IVIG because we live in Canada, even though her pediatric psychologist suspected PANDAS. I would likely have gone in that direction if it had been available to us. We were not allowed PANDAS testing either. She also presented with bartonella pain symptoms - shin, forearm, bottom of foot, and pick-like head pains.

 

Our LLMD has always insisted that DD's PANS symptoms would resolve with lyme/coinfection treatment, and after 2 years of multiple abx treatment ($1500/month including testing), she is at a new low, life-time baseline 5 weeks after weaning off all abx, except herbal/detox/methylation protocols. We will remain on these indefinately.

Edited May 27, 2013 by rowingmom

[Missmom]

If you caught this relatively early, which it sounds like you have and have already seen some improvement, then I would expect you will need at least 60 days of full dose antibiotics. Also, make sure the dose is high enough. Sometimes family doctors only like to give moderate doses as treatment dose and it won't be enough to choke out the infection entirely. This will only hold it at bay while taking the abx. I think that may be why some parents see a regression immediately after stopping the antibiotics. If you would like to give your sons weight and which abx he is taking maybe some of us can comment about reccomended doses.

 

Before my sons pandas diagnosis I would see some of his tics and behaviors, but we had a family doctor who always treated very aggressively any infection with antibiotics. This always kept things at bay and he would go immediately into remission. I never suspected any sort of pandas or anything because between infections all symptoms were gone. Anyway, when that good doctor moved away, we used another more conservative doctor who did not prescribe the higher dose antibiotics and that is when all heck broke loose. My sons infections were not cured after that. Now we are on the right track and have a wonderful pediatric neurologist who is treating my son.

 

Also, just wanted to comment about c diff. I had c diff back in December. I still take probiotics daily and when taking abx. I double it. I take culturelle, and florestor. Both have excellent reputations for helping with c diff. Also I think Zithromax is one antibiotic that is less likely to cause c diff. It is still possible but somewhat easier on the digestive tract. Don't know if your son is allergic to zith but if not I would feel more comfortable with giving that. Clindamycin is supposeably the worst antibiotic for contributing to c diff. I rceently had a throat infection and took Zithromax and seem to have gotten through it just fine.

[JoyBop]

Thanks for all that info and suggestions. DS is 68 lbs 7 years old and on 500 mg Ceftin BID. I'm told that is the adult dose. He was on Zith back on December when we caught the strep infection but didn't know what was going on and only gave standard treatment. Our doc suspects that it would be resistant to Zith for that reason.

 

I have to look into floraster. So far in giving culturelle full strength in the middle if the day. Clind is definitely off the list and he is allergic to all forms of penicillin and Amox.

 

We are taking him back to a neuro who in not sure will be much use. He doesn't doubt PANDAS but doesn't support long term abx and insists that there is a greater immunologic disorder causing him to be susceptible. I suppose I'll see what he has in mind. He also blew my insurance plea for our of network coverage as he told them an in network doc should suffice. Ill give him one last chance as he has been very kind and answers all my emails within minutes, even while in vacation. If that bombs I'm going to see see Dr. T.