melanie Posted April 4, 2009 Report Posted April 4, 2009 What abouut the OCD with the pandas do I need to look at meds?
Worried_Dad Posted April 7, 2009 Report Posted April 7, 2009 OCD is our biggest challenge right now, and we haven't found anything so far that helps. Tried zyprexa (per local psychiatrist - this was a disaster and made things worse), kavinace, inositol. No luck. If you find something effective, we'd love to know about it. Good luck!
melanie Posted April 7, 2009 Author Report Posted April 7, 2009 OCD is our biggest challenge right now, and we haven't found anything so far that helps. Tried zyprexa (per local psychiatrist - this was a disaster and made things worse), kavinace, inositol. No luck. If you find something effective, we'd love to know about it. Good luck! I logged on this am to post the exact same question before I call the PSY and she gives me something that he will have a reaction to PLEASE help
melanie Posted April 9, 2009 Author Report Posted April 9, 2009 What behaviors are you seeing as OCD? He keeps talking about hitler researches the crap out of ww11 speaks only about ww11 spends every second obsessing about it psych prescribed lexapro today havent picked it up yet
EAMom Posted April 9, 2009 Report Posted April 9, 2009 Melanie...my dd had akathesia and serotonin syndrome on lexapro, so we had to stop it after 2mo. Anger, akathesia (inner restlessness, wanted to be upside down a lot), dilated pupils, irritability were all symptoms from the lexapro...tough to tell apart from the PANDAS symptoms themselves. However, Lexapro did help with her eating/anxiety. Be careful with lexapro and keep your doses low. Dd is now on a low dose of Prozac (10mg/day) that she doesn't have any problem with. She is more cheerful and has less social anxiety with the prozac. I don't actually know how much prozac is helping her OCD...I think the Azith. is making much more of a difference with the OCD than the prozac (which probably helps a bit). I would also try advil if you're not already using it.
Indigo Posted April 10, 2009 Report Posted April 10, 2009 my dd had akathesia and serotonin syndrome on lexapro, so we had to stop it after 2mo. Anger, akathesia (inner restlessness, wanted to be upside down a lot), dilated pupils, irritability were all symptoms from the lexapro It *is* hard to tell this from PANDAS! Do you know if Tenex (guanfacine) can do this as well, or does that not affect the serotonin? We had tried zoloft which seemed to do that, but haven't tried prozac. Might be worth a try for us.
melanie Posted April 10, 2009 Author Report Posted April 10, 2009 my dd had akathesia and serotonin syndrome on lexapro, so we had to stop it after 2mo. Anger, akathesia (inner restlessness, wanted to be upside down a lot), dilated pupils, irritability were all symptoms from the lexapro It *is* hard to tell this from PANDAS! Do you know if Tenex (guanfacine) can do this as well, or does that not affect the serotonin? We had tried zoloft which seemed to do that, but haven't tried prozac. Might be worth a try for us. Ok guess what the psy prescribed LEXAPRO oh well he was on lexapro years ago and did ok so the md thought that would be a good place to start I dod put him on a gluten free diet this week and its not as hard as I thought its a little expensive because Im lazy and im buying pre done foods maybe if we stay on it ill learn to cook (maybe not) she prescribed 5mg should I try it? should I try something else any suggestions
ilovedogs Posted April 10, 2009 Report Posted April 10, 2009 I saw worrieddad mentioned he tried Kavinace with his child and that it didn't work. It worked really well for us and our ds is still on a low dose now and it's been 11 months since we started him on it. He turned into a brand new child within 2 days of starting the kavinace. Most of his OCD was religious scrupulosity and repeated thoughts that would torment him. He'd be in tears daily and was truly suffering. The Kavinace never took away his tics and right now I'm seeing an increase in tics but the OCD seems to be in check. I don't know if you've heard of Kavinace but it's distributed and produced by Neuroscience and they also do neurotransmitter testing, as well. HTH! Bonnie
melanie Posted April 10, 2009 Author Report Posted April 10, 2009 I saw worrieddad mentioned he tried Kavinace with his child and that it didn't work. It worked really well for us and our ds is still on a low dose now and it's been 11 months since we started him on it. He turned into a brand new child within 2 days of starting the kavinace. Most of his OCD was religious scrupulosity and repeated thoughts that would torment him. He'd be in tears daily and was truly suffering. The Kavinace never took away his tics and right now I'm seeing an increase in tics but the OCD seems to be in check. I don't know if you've heard of Kavinace but it's distributed and produced by Neuroscience and they also do neurotransmitter testing, as well. HTH! Bonnie Im going to pick it up now let me now the dosage hes 5'8 130 lbs
ilovedogs Posted April 11, 2009 Report Posted April 11, 2009 I saw worrieddad mentioned he tried Kavinace with his child and that it didn't work. It worked really well for us and our ds is still on a low dose now and it's been 11 months since we started him on it. He turned into a brand new child within 2 days of starting the kavinace. Most of his OCD was religious scrupulosity and repeated thoughts that would torment him. He'd be in tears daily and was truly suffering. The Kavinace never took away his tics and right now I'm seeing an increase in tics but the OCD seems to be in check. I don't know if you've heard of Kavinace but it's distributed and produced by Neuroscience and they also do neurotransmitter testing, as well. HTH! Bonnie Im going to pick it up now let me now the dosage hes 5'8 130 lbs Honestly, you'd probably have to check with Neuroscience. Right now my ds takes 1 kavinace a day but the naturopath told me that she has most patients on 2 a day and some children are even taking 3 a day for extreme cases. My ds weighs 70 lbs and is 10 years old and I had him taking 2 a day in the beginning. Bonnie
melanie Posted May 9, 2009 Author Report Posted May 9, 2009 Melanie...my dd had akathesia and serotonin syndrome on lexapro, so we had to stop it after 2mo. Anger, akathesia (inner restlessness, wanted to be upside down a lot), dilated pupils, irritability were all symptoms from the lexapro...tough to tell apart from the PANDAS symptoms themselves. However, Lexapro did help with her eating/anxiety. Be careful with lexapro and keep your doses low. Dd is now on a low dose of Prozac (10mg/day) that she doesn't have any problem with. She is more cheerful and has less social anxiety with the prozac. I don't actually know how much prozac is helping her OCD...I think the Azith. is making much more of a difference with the OCD than the prozac (which probably helps a bit). I would also try advil if you're not already using it. I need to hear more about this dans having a hard time iM not sure if if from comming off the lexapro
LoriL Posted May 9, 2009 Report Posted May 9, 2009 What abouut the OCD with the pandas do I need to look at meds? We have our 12 year old daughter on fluvoxamine "luvox" and have seen significant inmprovement after just one month- her symptoms included ritual hand washing-(she was using 4 bottles of hand soap per month) and contamination issues-she would be constantly using baby wipes or bleach wipes as well as "confessions", "checking" and disturbing thoughts and imagery. This is our first go round with the pandas and we have had alot of succes with meds and CBT training to address management of behavior and thoughts- this treatment seems appropriate for her age. i have been informed however that subsequent occurrences could change the whole presentation of symptoms and we could be back at square on.........good luck to you and your family Lori
pmoreno Posted May 11, 2009 Report Posted May 11, 2009 OCD is our biggest challenge right now, and we haven't found anything so far that helps. Tried zyprexa (per local psychiatrist - this was a disaster and made things worse), kavinace, inositol. No luck. If you find something effective, we'd love to know about it. Good luck! I wanted to ask you, are you still on antibiotics? Since the IVIG in Oct? I know that for a while you had some good moments after the IVIG, just like we did - I'm wondering if the OCD he's experiencing could have something to do with yeast overgrowth from abx? If you've read my post about that, you probably know what I'm talking about. If you haven't tried it yet, why don't you try the probiotics I've mentioned in my post. Pat
EAMom Posted May 11, 2009 Report Posted May 11, 2009 Hi Melanie...did you ever start the lexapro? I saw your post about Dan coming off of it (lexapro)? I think your son is actually having a hard time b/c of your strep and b/c his Azith. dose is too low. Even then, lexapro could confuse things (esp. if you've recently started or changed the dose).
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