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Antibiotics for OCD


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cab40 -- So sorry to read your post. Wish there was an easy answer to this crazy disease. I don't have much advice or wisdom--mostly just lots of questions, but my son's doctor is Dr. T. If I can help you in anyway there, just send me a PM. I will pray for your son and for wisdom and guidance for you and your husband.

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cab40 -- So sorry to read your post. Wish there was an easy answer to this crazy disease. I don't have much advice or wisdom--mostly just lots of questions, but my son's doctor is Dr. T. If I can help you in anyway there, just send me a PM. I will pray for your son and for wisdom and guidance for you and your husband.

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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?

 

No offense taken on my part, for sure. I'm intrigued by your experience. The only hypothesis I could offer . . . and it's just that since I don't have any actual training to go on . . . might be that there was no regression coming off of the Biaxin the second time because either 1) his inflammation was already fairly well under control so that component of the Biaxin wasn't integral to his health, or 2) the Biaxin wasn't contributing to any of the neurotransmitter balances like glutamate, so stopping it "cold turkey" didn't throw any of those components into a tailspin, or both? Maybe in the first instance (when he asked to go back on), it was either psychsymatic on some level, or he truly did still have some immune issues (inflammation or microbes or both) that the Biaxin had yet to eliminate.

 

As for seeing no differences whatsoever in that high dose XR . . . wow. I'm stumped, truly. Forgive me if this seems elementary, but when you say no change in the OCD after a month of XR, you've seen no changes whatsoever? Even in the smallest, most incremental of ways? Like, instead of taking 30 minutes to get ready for bed, he now takes 20? Less emotional lability than before? Anything?

 

Sometimes we've thought our DS has once again "plateaued" in terms of his gains, and then DH and I will start noting the little things he used to do that he doesn't do anymore, or the time he's slowly shaved off of getting ready in the morning or getting his homework done. There's nothing dramatic anymore, for the most part; it's just teeny, tiny steps.

 

Anybody else have any ideas?

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cab-

 

For ocd the only therapy approved to work is ERP therapy. Exposure and Response prevention. We have been to quite a few (expensive) therapists, and I can say that none of them "got it" in the way that our doc did at USF in FL. It is a very clear, studied, and proven type of therapy that unfortunately not many docs specialize in. Check the IOCDF website for practitioners in your area. Email/ call them for recommendations on a budget. Give them your son's sob story. Ask them for help.

 

The antibiotics may clear the infection, but you may need a combo of immune modulation and ERP to rid him of the ocd. If he has had ocd since onset in 2008- I venture to say that he is going to need ERP therapy no matter what.

 

I think your money is best spent with some steroids (ask Dr T if that s ok) and some really tough ERP. See if your plan will cover therapy in FL- if you can afford the airfare. If not contact local universities and big hospitals to see if any have ocd programs.

From our experience, when your child is fairly debilitated with ocd- once a week is a joke. It needs to probably be 5 days a week, for at least one week, and then maybe once a week thereafter. You may have success finding a program that will work with you on pricing (I think lots of University programs will).

 

The ocd will (most likely) not resolve on its own :(

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The ocd will (most likely) not resolve on its own :(

 

Christiansmom -- dcmom brings up a good point, even though it was intended as a response to another post here.

 

So, in addition to the XR, are you doing any therapy for the OCD? I guess I'm guilty of taking that for granted, but I shouldn't. I don't know how much my DS would've improved, abx, supplements, time and all considered, had we not kept up with the CBT/ERP to fight back at the OCD. I think his attitude and emotional lability would've still shown improvement, and perhaps the OCD rituals and thoughts would've been less upsetting to him, but the therapy is a big part of what got him back to his real life.

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As for seeing no differences whatsoever in that high dose XR . . . wow. I'm stumped, truly. Forgive me if this seems elementary, but when you say no change in the OCD after a month of XR, you've seen no changes whatsoever? Even in the smallest, most incremental of ways? Like, instead of taking 30 minutes to get ready for bed, he now takes 20? Less emotional lability than before? Anything?

 

 

Sometimes we've thought our DS has once again "plateaued" in terms of his gains, and then DH and I will start noting the little things he used to do that he doesn't do anymore, or the time he's slowly shaved off of getting ready in the morning or getting his homework done. There's nothing dramatic anymore, for the most part; it's just teeny, tiny steps.

 

No changes that I saw from the upped dose--pretty much struggles terribly with everything he has to do alone. Any school work done alone is impossible, not just difficult--can't concentrate, re-writes every letter, can't make the simplest decisions.

 

But Augmentin XR at 2000 mg. never really did anything for him either. And the Biaxin (and steroid burst) mostly just got him over the "worst of the worst" by getting rid of strep (or whatever the main culprit was). It never got him into what I would call "remission." I would even have been happy with regression as it may have pointed to a "herx" as my son is questionable for lyme. But he didn't regress either.

 

He has showed some slight improvement very recently as we have begun KPU treatment (tested positive, 30.5)--not as awkward, recalling his dreams (I know, sounds like an old wives tale!), sleeping harder, but it is very early to tell as we are not even on the full treatment yet. I am starting to have some hope though. Also, our naturopath who is guiding the KPU treatment feels that the homeopathic remedies that he has prescribed may have not been working well because of the KPU problem. So perhaps we may see some gains with the homeopathy soon as well.

 

Thank you for your comments and post. They are always helpful! Thanks especially for the post about your son's school success. The voted "Most Likely to be Cured of a Disease" made my son laugh and gave him hope!

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Christianmom,

 

How old and could you share your DS wweight on the 4000 mg AUG XR? Stilll on it? Any side effects? Thanks...

 

C

My son is almost 17, 5' 7", and weights 120 lbs. No side effects from the augmentin xr (or any of the other 7 or 8 drugs we have tried), but we have also been working with a naturopath who has switched my son's probiotic several times. He has been on high-dose antibiotics for a year and his recent complete metabolic panel was normal. He has had no signs of a yeast infection, but I am awaiting results for testing of that to be sure. My son is also not immune-deficient and has always been in excellent health. He is asymptomatic for strep and is a low-histamine person with no seasonal or food allergies, though he is somewhat sensitive to MSG and red and yellow food dyes. I mentioned all this because your son may be very different than mine.

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The ocd will (most likely) not resolve on its own :(

 

Christiansmom -- dcmom brings up a good point, even though it was intended as a response to another post here.

 

So, in addition to the XR, are you doing any therapy for the OCD? I guess I'm guilty of taking that for granted, but I shouldn't. I don't know how much my DS would've improved, abx, supplements, time and all considered, had we not kept up with the CBT/ERP to fight back at the OCD. I think his attitude and emotional lability would've still shown improvement, and perhaps the OCD rituals and thoughts would've been less upsetting to him, but the therapy is a big part of what got him back to his real life.

 

Thank you for making that point. No, we have not done professional CBT/EBP, though my husband and I have tried with some success with the worst of the worst--showers, dressing, hand-washing, eating (though he still struggles with all of these). But it is difficult to have much success with CBT/EBP when he is basically remaining in exacerbation. He shouldn't struggle with EVERYTHING, at least in my opinion (and our naturopath's). He wants to get better and is really, really trying. It is not a matter of him just giving up.

 

 

Today, however, one of the ways I felt his KPU treatment was helping was that he was really working at "not staring at his hands" (part of his OCD) without me reminding him. This is the type of help I am looking for from the antibiotics, supplements, etc. before going into full-blown CBT/ERP treatment. Right now I think professional pushing the CBT/EBT too much would just frustrate him.

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Thank you for making that point. No, we have not done professional CBT/EBP, though my husband and I have tried with some success with the worst of the worst--showers, dressing, hand-washing, eating (though he still struggles with all of these). But it is difficult to have much success with CBT/EBP when he is basically remaining in exacerbation. He shouldn't struggle with EVERYTHING, at least in my opinion (and our naturopath's). He wants to get better and is really, really trying. It is not a matter of him just giving up.

 

 

Today, however, one of the ways I felt his KPU treatment was helping was that he was really working at "not staring at his hands" (part of his OCD) without me reminding him. This is the type of help I am looking for from the antibiotics, supplements, etc. before going into full-blown CBT/ERP treatment. Right now I think professional pushing the CBT/EBT too much would just frustrate him.

 

Hang in there! Maybe the KPU is just what you needed to treat all along. I've heard something similar from a another PANDAS/PITANDS friend of mine. Once he seems a little more stable, maybe you can get in there with some more CBT/ERP to support the improvement trajectory. All the best!

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Here is a link about KPU, more commonly known as "pyroluria." The test is called a "KPU" test. The best place to have the test done is through Vitamin Diagnostics. Probably not something to worry about for your son right now. We didn't pursue it until my son wasn't improving on antibiotics, and a forum mom suggested it. If you do have the test done, please PM me as it is easy to get a false negative since it is a urine test that you do at home and send in. It is not often ordered by the PANDAS doctors, but is commonly ordered by lyme doctors. So you will see a lot more talk about it on the lyme forum.

 

http://www.naturopathyonline.com/PatientRoles/pyroluria.htm

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The physician treating our daughter mentioned Namenda. She said there were some tests being done using Namenda with autism. She mentioned using it with my daughter if we didn't see more improvement in symptoms by changing the antibiotics recently. My daughter is PANS not autistic and does not have austic tendencies. She said it worked by modulating glutamate. We are currently using NAC for that. That was the first and only time I had heard of it. If you end up using it, keep us updated on your progress. Thanks.

 

 

Dedee

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Has anyone heard or used NAMENDA (alzheimer med) for OCD ANXIETY in children? Have heard of it before; no data on iternet about ped use only ALZ sounds scary but a psychologist I spoke with on phone said it is being discussed or was discussed at OCD conf this year or last year, can't rememebr when. My son is 8, in trileptal and tenex no improvemnt in behavior - I know these are not anti-anxiety meds and we may pull him off but I wanted to ask sp about NAMENDA for OCD/anxiety. Thank you very much.

 

If I recall correctly, Namenda is a brand name for memantine. If you search for that, you may get more hits.

 

It is a glutamate agonists, I believe, along similar lines to riluzole, so yes, there is some thinking that it might be helpful for OCD. Melanie's son, Danny, was taking it and may still be. Perhaps a PM to her would answer some of your questions.

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