Lotafaith Posted February 28, 2010 Report Share Posted February 28, 2010 Hi, I have a son with autism/OCD/PANDAS, at this point we are looking at giving him something just help take the edge off, he doesn't even want to leave the house because of noises. Can anyone tell me what has worked and what hasn't for anxiety? Thank you, Lotafaith Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted February 28, 2010 Report Share Posted February 28, 2010 Lotafaith -- While there are many on the PANDAS forum (along with an article by Dr. Murphy) who will tell you that SSRI's and other psychiatric medications can be counter-productive for PANDAS kids with OCD symptoms, I will say that this hasn't been our experience. Since the PANDAS science is still evolving, I'm not sure if anyone knows for sure that there isn't also a genetic or organic component to OCD/anxiety that the PANDAS infectious component merely exacerbates, or what. Anyway, our son was originally diagnosed with OCD at age 6 (he turned 13 today); at age 7, he was given Lexapro, an SSRI which is a different formulation of the same components found in Celexa. It worked beautifully in terms of giving him leverage against the OCD and anxiety. With the Lexapro, he was able to fend off most of the compulsions (contamination stuff, mostly, but also perfectionism in school, etc.), and without the compulsions driving him, his general anxiety decreased, also. Unfortunately, I guess SSRI's are somewhat infamous for "poop-out" over the longer term, and when the OCD flared dramatically last May, the Lexapro didn't help him at all. He wound up having a classic panic attack. The doctor gave him clonansepam, which helps quell the anxiety but isn't supposed to be a long-term medication itself, either. They also tried risperadol for him which, again, takes the anxiety down but actually made DS sonambulent. Meanwhile, they weaned him off the Lexapro and onto Prozac, which didn't seem to do anything for him at all. Because his anxiety was just growing, they reached for the heavy mallet -- Zyprexa -- and he took that for a while. Again, I think it quelled his anxiety, but it had a whole host of side-effects (ravenous appetite, frequent urination, dry mouth) that we disliked immensely. Finally, they moved him from Prozac to Luvox. Honesly, I cannot tell if the Luvox is helping him at all at this point, but I'm 99% sure it isn't hurting him. Meanwhile, he's been on high-dose abx for almost 5 months, and this is the treatment we've seen to be most effective in the face of this latest burst of OCD on his part. We continue the Luvox because we don't want to mess with what appears to be working. In the end, given our experience, I am a pretty big fan of Lexapro. But the other OCD medications, I'm just not sure about. Hi, I have a son with autism/OCD/PANDAS, at this point we are looking at giving him something just help take the edge off, he doesn't even want to leave the house because of noises. Can anyone tell me what has worked and what hasn't for anxiety? Thank you, Lotafaith Link to comment Share on other sites More sharing options...
Chemar Posted February 28, 2010 Report Share Posted February 28, 2010 Hi, I have a son with autism/OCD/PANDAS, at this point we are looking at giving him something just help take the edge off, he doesn't even want to leave the house because of noises. Can anyone tell me what has worked and what hasn't for anxiety? Thank you, Lotafaith Hi my son doesnt have PANDAS but does have TS with OCD his OCD has always been the most bothersome aspect of his symptoms we did try SSRI meds in the beginning (2000) but after a year it was very clear that the side effects he was having were far worse than the OCD symptoms we were trying to treat. IMHO the SSRIs "zombied" him and his natural humor, artistic and musical talents were totally damped we also feel that in particular the Luvox was inducing psychotic side effects with help from a physician, we weaned him off all meds and began more natural ways to boost his serotonin (SSRIs do it by preventing serotonin uptake and so increasing its availability) We have successfully used supplements like Inositol, 5HTP, methionine, samE, st johns wort (not together!! and never to be used along with SSRI meds!!!!!!!!) when his OCD was very severe, the 5HTP @ 50mg each night was a real help he currently takes samE and Inositol and his OCD is totally subdued when his anxiety was very high, we found short term use of low dose GABA very helpful I know that the pathways at work for OCD in a PANDAS child are likely different from a child with tourettic OCD, but the concerns over SSRIs in young people are very real, nomatter the underlying illness. Even the FDA now has warnings on most SSRIs related to their use in youngsters Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted February 28, 2010 Report Share Posted February 28, 2010 we also feel that in particular the Luvox was inducing psychotic side effects Chemar -- What "psychotic side effects" did you see with Luvox? Our DS has been taking it (albeit at a pretty low dose, given his age and size) for nearing 5 months, and though we've not seen anything of that ilk (so far as I can tell), we're with you on not wanting him on it if we can successfully wean him from it. Albeit, there's a little trust there from us, given the success with Lexapro, and there's some fear about shaking up what's working for now, too. But still . . . Your doctor who's helped you with the supplements and their dosage (like 5HTP, samE, etc.), is this a naturopath, a DAN! doctor, or just a standard pediatrician? Link to comment Share on other sites More sharing options...
Chemar Posted February 28, 2010 Report Share Posted February 28, 2010 we have always used a combination of integrative physicians (conventionally trained MDs or DOs who are also specialized in alternative medicine) as well as naturopaths and other alternative healthcare practitioners (homeopath, acupuncture, biofeedback, radiogenics etc). When we began the natural route, we had both an integrative pediatrician as well as an integrative GP never have used a DAN doc the psychotic effects we noticed was self injurious OCD and irrational intense rages etc. he also had very dark moods, with intense depression and suicidal thoughts it was far worse when he was on the combination of haldol and luvox, but even after the haldol was weaned off, it was clear that the luvox was having negative effects Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted February 28, 2010 Report Share Posted February 28, 2010 the psychotic effects we noticed was self injurious OCD and irrational intense rages etc. he also had very dark moods, with intense depression and suicidal thoughts it was far worse when he was on the combination of haldol and luvox, but even after the haldol was weaned off, it was clear that the luvox was having negative effects Wow, okay. Nothing like that in our experience, thankfully . . . just dubious that it is having any effect at all. Any advice as to how one goes about finding an "integrative" physician? Is there an association or some other affiliation we could look them up under to find one in our area, do you know? Thanks! Link to comment Share on other sites More sharing options...
Chemar Posted February 28, 2010 Report Share Posted February 28, 2010 you could try the list pinned to the TS forum http://www.latitudes.org/forums/index.php?showtopic=565 you could also try googling the term for your area. sometimes the term alternative physcician can bring up integrative docs too our acupuncture therapist recommended the integrative GP we used and in turn they recommended the integrative pediatrician. the good thing re integrative docs is that because they are conventionally licensed, most insurance policies will cover them Link to comment Share on other sites More sharing options...
Lotafaith Posted February 28, 2010 Author Report Share Posted February 28, 2010 we are on zoloft right now and have been for a long time, all the other meds we have tried have had awful side effects. Has anyone here ever tried anything like ativan? I started him on my kelflex that I had from a past sinus condition and after three doses he is calming down somewhat. we have to see the psyc dr wed and I am thinking maybe we need something to just take the edge off for the moment until I can figure all this out Lotafaith Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted February 28, 2010 Report Share Posted February 28, 2010 we are on zoloft right now and have been for a long time, all the other meds we have tried have had awful side effects. Has anyone here ever tried anything like ativan? I started him on my kelflex that I had from a past sinus condition and after three doses he is calming down somewhat. we have to see the psyc dr wed and I am thinking maybe we need something to just take the edge off for the moment until I can figure all this out Lotafaith Never tried ativan; did have one bad experience with Abilify, never to be repeated! Link to comment Share on other sites More sharing options...
Lotafaith Posted February 28, 2010 Author Report Share Posted February 28, 2010 we are on zoloft right now and have been for a long time, all the other meds we have tried have had awful side effects. Has anyone here ever tried anything like ativan? I started him on my kelflex that I had from a past sinus condition and after three doses he is calming down somewhat. we have to see the psyc dr wed and I am thinking maybe we need something to just take the edge off for the moment until I can figure all this out Lotafaith Never tried ativan; did have one bad experience with Abilify, never to be repeated! We also had a very, very bad experience with Abilify, it was the worst! Lotafaith Link to comment Share on other sites More sharing options...
richae Posted March 6, 2010 Report Share Posted March 6, 2010 i just joined.I dont know if this is the right forum.I hope this is read by the appropriate physcians.My son has a ton of auto diseases.He has crohns and lost his colon,he has celiac,he has hashimotos ,ocd and very recenly a very rare disease called autoimmune encephalitis.He is being by a team of drs from Mayo and Cornell.He is 27.HE has had Predisone but more importantly for this forum;IVIG.His severe OCD ---checking etc is GONE.He has had 5 treatments of IVIG and its a miracle.His psy out of Columbia is flabergasted and his neuro drs dont understand it ;BUT IT IS REAL.I HPE somebody sees this . Link to comment Share on other sites More sharing options...
nevergiveup Posted March 7, 2010 Report Share Posted March 7, 2010 Thanks for posting, please help our children and push this issue with the expert neuro's at Mayo. My dd had ocd for five years and after ivig for the first time it disappeared. She has an immune deficiency and receives ivig. Some OCD is caused by brain inflammation and autoimmune disease but the general medical community has poo pood all evidence of this. OCD can be a symptom of autoimmune disease and docs need to do a better job of ruling out this before using shrinks. Docs also have to be willing to treat ocd as such if there is evidence of autoimmune disease. (Blood markers). I am thrilled for your son. Thank you for your post. Maybe you could convince your docs to publish this finding in neuroimmune science magazine or in a rheum journal. The more evidence out there the more children whom will have their childhoods and futures returned. Thank you again! i just joined.I dont know if this is the right forum.I hope this is read by the appropriate physcians.My son has a ton of auto diseases.He has crohns and lost his colon,he has celiac,he has hashimotos ,ocd and very recenly a very rare disease called autoimmune encephalitis.He is being by a team of drs from Mayo and Cornell.He is 27.HE has had Predisone but more importantly for this forum;IVIG.His severe OCD ---checking etc is GONE.He has had 5 treatments of IVIG and its a miracle.His psy out of Columbia is flabergasted and his neuro drs dont understand it ;BUT IT IS REAL.I HPE somebody sees this . Link to comment Share on other sites More sharing options...
nevergiveup Posted March 7, 2010 Report Share Posted March 7, 2010 Could you please also post his ivig dosage (mgs or grams per body weight kgs) ) and how often he has received ivig. (Every three weeks?). At what point did yoi see improvement, after 5 months? Or earlier? Thanks again for posting. i just joined.I dont know if this is the right forum.I hope this is read by the appropriate physcians.My son has a ton of auto diseases.He has crohns and lost his colon,he has celiac,he has hashimotos ,ocd and very recenly a very rare disease called autoimmune encephalitis.He is being by a team of drs from Mayo and Cornell.He is 27.HE has had Predisone but more importantly for this forum;IVIG.His severe OCD ---checking etc is GONE.He has had 5 treatments of IVIG and its a miracle.His psy out of Columbia is flabergasted and his neuro drs dont understand it ;BUT IT IS REAL.I HPE somebody sees this . Link to comment Share on other sites More sharing options...
faith Posted March 7, 2010 Report Share Posted March 7, 2010 richae, what was the ivig for initially? nevergiveup, how long ago did your child have IVIG? are you sticking with the one, or monthly? have you seen some improvements? thanks Faith Link to comment Share on other sites More sharing options...
syndony Posted March 8, 2010 Report Share Posted March 8, 2010 OCD has innocent victims as well. Your co-workers, family and loved ones around you all suffer from your problem. They're all affected by your quirks. It could be as simple as making them late for meetings, dinners, outings or special events with time consuming compulsions to quadruple check things around you. You may avoid physical contact with those you love out of your own discomfort towards germs or uncleanliness. It's possible you're losing touch with friends and family around you due to your fear of driving. Perhaps your work is suffering due to your inability to stay focused on anything other than your own OCD tendencies. These are just a few random scenarios that OCD can create. Whatever degree of OCD you suffer from, you NEED help and the fact is the only one who can save you is yoursel Link to comment Share on other sites More sharing options...
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