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Everything posted by Ladymavs

  1. 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. 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. 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.
  9. 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. 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. 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. 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. 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.
  16. Our PANS doctor wanted us to go back to azith and give it some time to work as this seems to be the first line of defense in battling myco p. He also wrote script for mino in the event that the azith did not bring improvement in 2-3 weeks. However, I keep reading many on a PANS forum that you need an abx combo to really combat myco p. Many have used azith + augmentin or another combination. Is this the case--could it be that we need to ask for another abx to help the azith? The PDOC said to stay at the zoloft 25mg and see if the abx brings relief. If they show no improvement, he said we could go to 50mg zoloft and see if that helps with the OCD/intrusive thoughts. The thoughts are so tiresome and I know my son is ready to get some real relief. We are doing CBT and about to get into the ERP portion of therapy within a couple of weeks. I really hope this brings a breakthrough as we need it.
  17. My son has always responded to azith in past flare ups with the OCD/intrusive thoughts since PANS onset back in fall of 2013. However, when he flared up again this past spring, we tried the azith again and he did not seem to respond. Eventually, the OCD got so bad that we took a trip to the ER. There, he was put on low dose risperdal (.25mg twice daily) which we are starting to wean. We recently added zoloft and are currently at 25mg. We just moved up from 12.5mg and it does seem to increase the OCD initially which I read is common...so hopefully it will settle in the next week or two or we will be going something different. Our issue has always been primarily high MYCO P and we just tested his levels again and hope to have results early next week. Our PANDAS doc has mentioned doxy in past visits since we have been through the azith, biaxin, and omnicef. In reading, it sounds like mino may be a better choice as it crosses the BB. We are currently doing CBT and will be getting into the ERP part in the next couple of weeks...so I want to do all we can to continue trying to bring down the OCD to make therapy effective. Anyone have experience with zoloft? Mino?
  18. We just started on 6mg of zoloft for DS (age 15...130lbs). Is it normal to start this low? It has only been a few days and we have seen very nominal changes, if any. The good thing is that it has not gotten worse. I was wondering when is a good time to talk to doctor about upping to 12.5mg.
  19. This is very fresh with our family as our PANS son (14) was recently admitted to inpatient for a few days after I felt we had done all we could to help ease his anxiety over scrupulosity OCD thoughts and nothing was working. We actually spent 8 hours in the ER before being taken over to adol. inpatient. It was a tough call, but I knew that they would be able to get him to baseline and going home was not going to get us anywhere. They did start him on a tiny dose of risperdal (.25 x twice daily). This has obviously not stopped the thoughts...but the reactions are much less intense. Ours was private pay so we did not have insurance held over our heads...but I agree that this is not a tactic of integrity. I hope that your son can get what he needs to get back on track. Our next step is starting back the CBT. Good luck!
  20. How long is the McLean program? We are currently scheduled for Rothman for later this summer, but may not be able to commit to the full three weeks due to prior schedule conflict. Does anyone know if you can do 2 weeks or would we need to reschedule for a time when we can do all three weeks?
  21. I too am curious about this location. We did an intake for this location as it is closer to us as well. They told me that all of the programs at each of the locations are run pretty much the same in terms of curriculum and such. It looks like they too have a Ronald McDonald House nearby. Maybe somebody on the forum will have some feedback.
  22. We recently did an intake for Rothman, although we hope to be able to get into our local OCD therapist on a regular basis (or even multiple times for the first couple of weeks or so). However, if not, we are planning on this route. I also did an intake for Rogers, but that program is normally 6-8 weeks and also twice as much (and our insurance does not cover until we meet our deductible. As a parent, I hope to also learn how to best react to the OCD in order to help DS make progress. He is 14, so he is old enough to take some ownership over it and I just want to make sure that we are using the right verbiage and techniques to help rather than set back...so I look forward to the therapy for all of us. Anyone have any direct feedback from Rothman?
  23. We have recently done a phone intake for both Rothman and Rogers. We got a recommendation from both. Being that our son has one major issue (religious thoughts OCD) and our schedule for the summer...I would prefer to do the 3 week program through Rothman. Any feedback from their program? In our packet, it shows that we would be working with Dr. Tan. Anyone have feedback on this particular therapist? I don't want a situation as mentioned above with interns doing most of the work as it is an expense and time to travel from TX. We have an OCD therapist here in Dallas, but it is often difficult to get on a standing schedule and I believe the intensive sessions back to back may be a good start to turn the corner. Would love some feedback.
  24. This all sounds very familiar. Our DS (14) has been battling with scrupulosity OCD for a few months now. However, in the last six weeks, it has been an all time high since our journey began with PANS back in late 2013. He is pretty much overcome with doubting his faith and doing a number of compulsions to "overcome" the obsessive thinking. It has become pretty much non stop the past few days and is starting to effect his work and ability to focus. We started our journey on azith for high myco p and my son initially responded almost immediately and we saw almost immediate relief and we stayed on for a few months and came off, using only for flares. However, it seemed that it was no longer effective when we picked it up this spring, so we switched to biaxin....did nothing for the 30 days we took it. We have now been off abx the past week or so...but have talked with DR about going minocycline or doxy. He wanted us to try a round of inositol dosing for 6 weeks before looking at going to new abx. Well, the inositol has done nothing over past three weeks and seems to make it worse. At this point, we are just trying to dampen things so that CBT can be effective. We are using NAC, vit c, probiotic, omegas, and multi vit. I don't want to go SSRI unless absolutely necessary and like earlier post I would be interested in something fast acting to take the anxiety down some to we can at least get through therapy sessions. Any suggestions or am I missing something that may need to be addressed?
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