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Ladymavs last won the day on April 10 2016

Ladymavs had the most liked content!

About Ladymavs

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  1. N-acetylcysteine (NAC)

    What did you find helped with the scrupulosity? This is what my son battles and I too believe it is the residual effect of the PANS. We are doing supplements and low dose SSRI in the hopes that we can calm things enough to get back into therapy which will give him coping tools when things do flare up.
  2. zoloft - good/bad?

    In the fall of 2016, we started our son on low dose zoloft to try and bring relief to severe scrupulosity OCD and hopefully allow him to more fully participate in therapy. We started at 6mg and moved up every 4-6 weeks to 25mg. Since we did not see any real change (although it was not any worse), we decided to wean off. In hindsight, we probably should have moved up to at least 50mg at that point. After coming off, we realized that possibly it was helping ever so slightly. In the summer of 2017, we began again and this time worked up to 50mg and stayed there several weeks. We still did not notice any big change (although again...it was not worse). We have been weaning again and are finding that since we have been back down at 12.5mg, OCD has flared. We are seeing PANS doctor tomorrow and will discuss moving back up on the zoloft and going to 75 or 100mg if needed this time OR trying Prozac (or other ssri) since we have done two rounds already. Any thoughts on trying zoloft again or moving in a different direction? We have also been on numerous abx throughout the past couple of years and none seem to be helping too much either.
  3. I have emailed you previously, but wanted to ask how your son responded to therapy when starting. My son has worked with therapists who specialize in anxiety/OCD and has struggled previously with the ERP portion so we have backed down to ACT therapy with our current therapist. However, my son fails to consistently apply any tools learned to the OCD thoughts. Therefore, I feel like it is misty a waste. How did your son stay engaged in therapy and learn to apply the strategies?  I want him to not be consumed by the compulsions, but he does not seem to have the motivation to work at reducing them.  

  4. We did MTHFR testing (not the complete 23andme), but came back heterozygous for a1298c. According to what I have read, this is often seen as something of no big concern. However, we did find some multivimin with methy form of b12. I would like to find a magnesium and zinc and b6 supplements as I am sure he probably does not have enough of these. What dosage of B did you use? I wish the azith had not pooped out on us...because we have not been able to find an abx that knocked out the OCD like azith seemed to do initially.
  5. zoloft - good/bad?

    My son, who just turned 16, started back on zoloft a couple of months ago. We did 12.5mg for four weeks and are finishing up 4 weeks at 25mg. We have seen some minimal results, but would like to move up again to see if we can get some added relief for the intrusive thoughts. We especially want to help him be more productive with therapy as we know this will long term be more beneficial than anything. I am torn whether to step up to 37.5mg or go to 50mg (therapeutic dose) and see how he responds at the therapeutic dose. I was hoping that the minocycline would help us as there were some promising studies when mino and ssri were used together, but we did not find it greatly beneficial. However, we just did a 30 day course to see what happened. I am starting to think that the OCD is residual and that it may be time to go a more naturopathic route and address basics like nutrition gaps, continuing on gut health, and see what the ssri can bring. Any thoughts on ramping up or using a more (non abx) route?
  6. We just started at the 12.5mg zoloft today. Probably could have gone straight to 25mg as that was the script..but guess that I err on the side of caution. I think that we may have to drop down the minocycline as I have heard the 200mg is really strong and that could be playing a role in our current flare...who knows!
  7. We have always tested mycoplasma was our main issue as this number has always been high. However, in our initial testing back in 2014, our HHV6 was high at over 7. This past month, this is one of the test we ran and he was at 29. I am now wondering if we need an antiviral in place of or to go with the abx. Maybe the virus is contributing to the OCD behavior.
  8. We are almost 30 days into minocycline for mycoplasma and has had no dent in the OCD thus far. We had tried zoloft during the summer and were up to 25mg for several weeks and noticed nothing, so we opted not to increase. My thought that we should see some difference if it were working and would have moved up had that been the case. I would like to get these underlying issues addressed with mycoplasma and hhv6, but may have to consider another SSRI to help dampen the OCD thoughts if at all possible.

    Is HHV6 treated similarly to EBV? We tested negative for EBV, but high for HHV6. Currently using minocycline for mayo, but curious about adding an anti-viral.
  10. ACT Therapy

    Thanks for the feedback. As I said, I know that ERP is considered gold standard...but he attempted that and it was an epic fail for us at the time. From my research, it looks like ACT can often be as effective and the dropout rate is much lower than ERP. I think that he may be more apt to trying this approach for the time being. Sounds like it was highly effective for your son. Glad that he is doing well.
  11. ACT Therapy

    My son is 15, almost 16, and we did several sessions with our therapist who has extensive experience with OCD. We spent several sessions going though the basis of OCD and leading up to ERP...however, my son was not highly successful in ERP and also had a flare up shortly after and we halted. I think his lack of maturity and the nature of the OCD (religious scrupulosity) made it even more difficult. I want to start back, but am very interested in using the ACT approach. While I know ERP is the gold standard, I would rather him get some help from ACT than nothing. Have you had any feedback or experience with ACT?
  12. We just started a new abx for myco p in the last 30 days as the azith had run its course and others tried have little to no effect. We asked for minocycline as I had read that it had been studied to have effect on OCD. So far, we have not seen any significant improvement, but we will see if we see anything over the next 20-30 days.
  13. After our initial onset back in late 2013, my son was put on azith and it seemed to be effective against the OCD thoughts (my son's only real symptom through our journey). We stopped after the first month or so and he stayed good for over a year. When he flared, we went back to azith and it seemed to bring things back to normal quickly. However, in 2015, it seemed to have no effect, even after 30+ days, and we have been through a variety of abx since then with no success. I am now thinking we may need to address some immune issues and work to clear any metals or treat any viruses. We did test hetero a1298c, but many feel this does not need to be addressed specifically. Our high number has been myco p, which is what we used the abx for. However, we just tested 29 for HHV6. Dont' know if this number requires anti-viral...but plan to ask. We are now doing minocycline, which has been tested to help with OCD, but not seeing any results thus far. Anyone decide to move from abx and treat other issues to build immune system (metal, etc)?
  14. Dr. Rao in Texas

    We have seen Dr Rao since our onset back in late 2013. He is very knowledgeable on PANS/PANDAS and spends a great deal of time with patients. This being said, you often have to wait a long time to be seen in the patient room. However, as long as he is spending time with us and being thorough (which he does), I dont' have an issue. Just be prepared to wait or plan to get an early appt in the morning. The staff is helpful, especially Lori, and we have been pleased so far.
  15. Clonidine Patch?

    My PANS son was recently prescribed .1mg clonidine daily (1/2 tab AM and PM) to help ease anxiety and possibly help with his OCD. We have not noticed that he gets overly tired, but we also have not really noticed any help with the OCD & anxiety around it. My son also has aDHD and we had read previously that clonodine can help with focus...but have yet to see. The script said to work up to .1mg twice daily and we are increasing slowly. At what point, if any, did you notice any major difference with clonodine? I opted to try over other medications due to the lack of too many side effects. We do check his BP regularly to make sure it does not dip too low. Any feedback would be appreciated.