rysmom58 Posted January 25, 2010 Report Share Posted January 25, 2010 With my son it took about 3 weeks to notice a difference. From there, it too almost 6 mos. for me to figure out what dose, time etc.. worked best for Ryan. Like I said in my previous post, we've been 99 percent tic free since the beginning of Aug. Up until then, Ryan had a tic in some form or another since he was 3. Link to comment Share on other sites More sharing options...
laurena82 Posted January 25, 2010 Report Share Posted January 25, 2010 could anyone say how long it takes for the clonodine to go to work? a day or two? or is this something that has to kick in after about 3 weeks or so? just wondering. With my son it took about 3 weeks to notice a difference. Wow....I recall noticing an improvement the first day already.....and about the full effect by day 2-3. Maybe rye started on a low dose and had to work up, so it took a few weeks??? My son started on 0.1 mg am and pm , as I recall, by day 2 tics were mostly all gone, and by day three he was more drowsy, and so started backing off on am doses. Link to comment Share on other sites More sharing options...
rysmom58 Posted January 25, 2010 Report Share Posted January 25, 2010 could anyone say how long it takes for the clonodine to go to work? a day or two? or is this something that has to kick in after about 3 weeks or so? just wondering. With my son it took about 3 weeks to notice a difference.Wow....I recall noticing an improvement the first day already.....and about the full effect by day 2-3. Maybe rye started on a low dose and had to work up, so it took a few weeks??? My son started on 0.1 mg am and pm , as I recall, by day 2 tics were mostly all gone, and by day three he was more drowsy, and so started backing off on am doses. Ryan did start a on a very low dose and we worked up from there. Link to comment Share on other sites More sharing options...
Fixit Posted January 25, 2010 Report Share Posted January 25, 2010 Hi Bev, I am thinking that if he goes on meds now it will stop him getting any worse - but is there any truth in this or can it make matters worse? Something like clonidine (catapres) wont do anything towards "curing" the tics....it's basically suppressing them for a day or so while the med is working (kind of like a pain pill is removing the sensation of pain for a few hours, but not actually doing anything to treat the underlying cause of the pain). ((hugs)) and BEST WISHES!! Just thinking outloud...wondering...... i read on the pandas board...by EAMOM....that it was studied that SSRI's did something to let the brain or brain conections heal....and some have had perminant remission (you can tell i very technical)...(i ma.I wonder if, that might be true of other things like cataphese....it lets the brain settle down in some other way to heal. maybe it hasn't been studied yet. this is by EAMOM "Our PANDAS dd was placed on Lexapro (5mg/day along with antibiotics, augmentin intially, then amoxicillin) when we first learned of PANDAS. At the time she was in a severe PANDAS episode (March 08). Among other things, she had full-blown anorexia nervosa (required 6 days of hosp. for malnutrition). When we tried to wean her off of the lexapro 2mo. later (at that point she was on 10mg/day) she had major withdrawal (flu-like symptoms) and her anorexia returned in full-force. Hence, instead of weaning her off of ssri's we transitioned her to prozac (10mg/day). This was all before we "discovered" Azith/advil (actually this is HOW we ""discovered advil but it took a couple of weeks for us to be able to give the advil consistently). My take on the Lexapro: It definitely wasn't the "right" ssri for for dd. She had serotonin syndrome (akathesia, also other issues, didn't want to go to school) on this drug. I think it did help her mood a bit and also her eating. At higher doses (10mg, hoping that would help her OCD b/c it wasn't adequately controlled on 5mg) she had increased defiance/aggression which we thought were pandas symptoms, but turned out to be from the ssri. My take on the Prozac: I'm not sure it's doing anything at this point. But, we've been reluctant to "mess with what is working" and also wonder if it is helping a pre-existing social anxiety. We did try to wean her off Nov. 09. We went down to 5mg/day for 2 weeks and and then 0mg for another 10 days. What we noticed as we weaned her off she became very "barky" and irritible...rather difficult to live with. When we placed her back on she improved. We're not sure if the irritibility was that the prozac is actually helping the pandas (irritibility was one of our first pandas symptoms) or if it was an effect of prozac withdrawal (ie if we would have been okay if we weaned off much slower.) Dd also had a dental cleaning and a mild viral infectin (no school missed) during this time frame. So, I don't know if that influenced things. I also wonder about prozac having anti-inflammatory effects and whether that is helpful for pandas kids. If you look on wikipedia (yeah, I know) there is a section about ssri's having anti-inflammatory/immune-modulating properties. http://en.wikipedia.org/wiki/Selective_ser...ptake_inhibitor So, it is possible (as long as the doses aren't high enough to cause bad side effects) that ssri's offer some immune modulating/anti-inflammatory benefits (like azith, advil, pred). Something to think about anyway. I do agree that if ssri's are used, they should be used with extreme caution and at lower doses since pandas kids do seem sensitive to adverse side effects (which can then be confused with pandas symptoms). Anti-inflammatory and immunomodulation Recent studies show pro-inflammatory cytokine processes take place during depression, mania and bipolar disorder, in addition to somatic disease (such as autoimmune hypersensitivity) and it is possible that symptoms manifest in these psychiatric illnesses are being attenuated by pharmacological effect of antidepressants on the immune system.[16][17][18][19][20] SSRIs have been shown to be immunomodulatory and anti-inflammatory against pro-inflammatory cytokine processes, specifically on the regulation of Interferon-gamma (IFN-gamma) and Interleukin-10 (IL-10), as well as TNF-alpha and Interleukin-6 (IL-6). Antidepressants have also been shown to suppress TH1 upregulation.[21][22][23][24] Future serotonergic antidepressants may be made to specifically target the immune system by either blocking the actions of pro-inflammatory cytokines or increasing the production of anti-inflammatory cytokines.[25 Link to comment Share on other sites More sharing options...
laurena82 Posted January 26, 2010 Report Share Posted January 26, 2010 I wonder if, that might be true of other things like cataphese....it lets the brain settle down in some other way to heal. maybe it hasn't been studied yet. When my son was on it was 10 years ago, and no one was aware of that then. Maybe this has been learned since then? I would think your neurologist prescribing it should be able to give you more info on this? Link to comment Share on other sites More sharing options...
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