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MomWithOCDSon

Antibiotics for OCD

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Hi Chris-

 

I am sorry for what you are going through. I have two daughters with pandas, so I understand your frustration.

 

I will make two suggestions based on what has worked for us...

 

Firstly, my kids clearly react to things that trigger their immune system, mainly illness (but other things, loose teeth, etc). We do use antibiotics to clear infections, however we have found that clearing infection is NOT our problem. Settling the immune system after the infection is the problem. For my kids this does NOT happen by itself. We have used PEX or steroids to do this, with varying but positive results. We have found this to be KEY. The quicker we respond with immunomodulation, the less we need to fix.

 

Second, aside from the medical intervention- the very best thing we have done is a three week intensive outpatient ocd therapy program at University of South Florida. It was relatively budget friendly (we have had NO success finding a qualified psych, nevermind someone who takes insurance, locally). The therapy was covered by insurance- we paid about $150 per child total for the 3 weeks- and we stayed for free (most meals provided) at the Ronald McDonald house around the corner, we didn't even have to rent a car. The only real expense was flying to FL. The therapists there are EXTREMELY qualified, and they know a lot about pandas.

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Nancy, Heard the name "Dr. T", who is he? Can u give me full name...? where he is at? have you worked w/ him? Can he do other things besides antibiotic regimins? Sorry one more: I assume by your post he will do consult across state lines i.e. phone?

 

God bless u!

 

Chris (AZ)

 

Hey Chris -- I sent you a PM regarding Dr. T. Look for it in your forum inbox.

 

In answer to your question about HOW did my DS get better? Part miracle, part persistence, part luck, part endurance! In all truth, I think time has had a lot to do with it in our case. But mostly, we've just thrown everything at it we possibly could, and we got a lot of help here, too. You just have to be extremely tenacious and listen to your gut, and somewhere along the way, you'll hit upon something that seems to give you a little edge, and then you'll work to exploit that edge until there're more successes than failures in day-to-day life, and it just keeps rolling from there.

 

What does Mom always say? "It's always darkest before the dawn." :)

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Hi Chris-

 

I am sorry for what you are going through. I have two daughters with pandas, so I understand your frustration.

 

I will make two suggestions based on what has worked for us...

 

Firstly, my kids clearly react to things that trigger their immune system, mainly illness (but other things, loose teeth, etc). We do use antibiotics to clear infections, however we have found that clearing infection is NOT our problem. Settling the immune system after the infection is the problem. For my kids this does NOT happen by itself. We have used PEX or steroids to do this, with varying but positive results. We have found this to be KEY. The quicker we respond with immunomodulation, the less we need to fix.

 

Second, aside from the medical intervention- the very best thing we have done is a three week intensive outpatient ocd therapy program at University of South Florida. It was relatively budget friendly (we have had NO success finding a qualified psych, nevermind someone who takes insurance, locally). The therapy was covered by insurance- we paid about $150 per child total for the 3 weeks- and we stayed for free (most meals provided) at the Ronald McDonald house around the corner, we didn't even have to rent a car. The only real expense was flying to FL. The therapists there are EXTREMELY qualified, and they know a lot about pandas.

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Hi Chris-

 

I have two daughters, age 8 and 11. We are almost 3 years into pandas. Both had overnight onset of debilitating onset of ocd, anorexia and sleep issues with strep infection. Things have been very up and down for them, however, they clearly react to illness. Both have had 2 to 3 overnight onsets. They have a pretty clear pattern of relapse and remission. We have been extremely fortunate to live in the right area. We lived in DC when they were diagnosed, 15 minutes from a top pandas neuro. We moved home to NJ last year, specifically to be close to my family, as we really need the support at times.

 

Our insurance paid for pex once, for both. It was a fight, the doctor and my dh's HR dept were on the phone daily, and it took three weeks.

 

I know that pex is not an option for most- and that stinks, because I am a big believer. However, post pex, they have both had an episode that we managed with steroids. I really think steroids are somewhat underused in pandas. I think there are probably many treatments that are typically used for autoimmune disorders that could be helpful.

 

I found a couple somewhat helpful docs by email. If you have any time, I would consider emailing every neuro and rheumy at your somewhat local hospitals. I think teaching hospitals are typically the best.

 

You will have an easier time if your child had sudden onset.

 

My kids are doing really well, right now. I am always afraid pandas will appear, and it does seem we will have yearly episodes (just not possible to keep them from getting sick). However with being aggressive with both medical and psychological treatment, they are able to live a full, mostly happy life.

 

We have found antibiotics helpful to clear infection, and antibiotics did remit their initial episode, however, since then I don't think they have been too useful. We have found immune modulation (steroids) and ERP (therapy for ocd) to be our best options.

 

Does your son suffer from ocd? Did he have strep or sudden onset? How long ago? How have you treated?

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This entire conversation has been very educational. I am just always so grateful to this forum for sharing its wealth of knowledge and ideas.

Mary

from Michigan

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Hi Chris-

 

I have two daughters, age 8 and 11. We are almost 3 years into pandas. Both had overnight onset of debilitating onset of ocd, anorexia and sleep issues with strep infection. Things have been very up and down for them, however, they clearly react to illness. Both have had 2 to 3 overnight onsets. They have a pretty clear pattern of relapse and remission. We have been extremely fortunate to live in the right area. We lived in DC when they were diagnosed, 15 minutes from a top pandas neuro. We moved home to NJ last year, specifically to be close to my family, as we really need the support at times.

 

Our insurance paid for pex once, for both. It was a fight, the doctor and my dh's HR dept were on the phone daily, and it took three weeks.

 

I know that pex is not an option for most- and that stinks, because I am a big believer. However, post pex, they have both had an episode that we managed with steroids. I really think steroids are somewhat underused in pandas. I think there are probably many treatments that are typically used for autoimmune disorders that could be helpful.

 

I found a couple somewhat helpful docs by email. If you have any time, I would consider emailing every neuro and rheumy at your somewhat local hospitals. I think teaching hospitals are typically the best.

 

You will have an easier time if your child had sudden onset.

 

My kids are doing really well, right now. I am always afraid pandas will appear, and it does seem we will have yearly episodes (just not possible to keep them from getting sick). However with being aggressive with both medical and psychological treatment, they are able to live a full, mostly happy life.

 

We have found antibiotics helpful to clear infection, and antibiotics did remit their initial episode, however, since then I don't think they have been too useful. We have found immune modulation (steroids) and ERP (therapy for ocd) to be our best options.

 

Does your son suffer from ocd? Did he have strep or sudden onset? How long ago? How have you treated?

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Something that is odd to me about the antibiotics is that my son was on Biaxin 2000 mg. for many months. When I tried to take him off, he regressed within 24 hours and asked to go back on, which he did.

 

Anyway, he has now been on Augmentin XR 4000 mg. for about a month. He dropped the Biaxin cold turkey to do this. No change in OCD--good or bad. So since Augmentin XR is of a different antibiotic class (beta-lactams, involved with glutamate modulation) than Biaxin (macrolide, giving an "anti-inflammatory effect"?), why didn't my son regress when taken off the Biaxin?

 

Please, no one be offended by this as I am only talking about my son (and I do think my son's case is a lot different than most of the PANDAS cases on this forum), but it crossed my mind that perhaps the Biaxin had somewhat of a "placebo" effect on him, as he was very frightened when we tried to go off them a few months ago. I think the fear came because he knew the antibiotics got him out of "the worst of the worst" and he didn't want to go there again. So even attempting to go off the Biaxin started a new OCD fear with him. I know the Biaxin helped him at one point to get over the strep (lyme, mycoplasma, or whatever), but perhaps he didn't really still need it.

 

Nancy, I thought your post was interesting about reducing antibiotics with your son VERY slowly. I did not do that with the Biaxin.

 

Anyway, logically it seems to me that he should have regressed when he switched from the Biaxin to the Augmentin XR if the Biaxin was actually helping him, but he didn't. Anyone have thoughts on this or seen the same thing?

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