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Everything posted by Ladymavs

  1. Our DS (14) is nearly completely overcome with scrupulosity OCD at this point. We have tweaked some supplements, even those (like inositol) that are highly touted for OCD have not done much for us. Same can be true for NAC. We are right now just trying to dampen the thoughts so that CBT can be effective. We have a couple of upcoming sessions with OCD specialist in the next couple of weeks and hoping to get on the calendar a few more times. I just got word that we got approved for the 3 week intensive at Rothman...but cannot get in until July...so hoping to make some progress here until that time. Has anyone found supplements for regimens that have been successful? I would prefer not to go SSRI unless absolutely necessary. We came off the abx for awhile, but maybe we need to switch up abx as our other one was not proving effective any longer.
  2. So, after our recent visit with PANDAS doctor...we decided to go back to the azith 500mg as this seemed to show an ever so slight improvement when we moved to this again from the biaxin (after 30 day course of biaxin). Since we added so many things at once in the mix (NAC, turmeric, vit c) and did not see considerable improvement, so we opted to do azith , probiotic , and omega which is what we had been doing prior to the other supplements. He also suggested that we add inositol (3g per day) and we did this for about 7 days and it seemed to escalate the intrusive thoughts OCD. I have heard that the inositol can really help with OCD and sometimes it takes time to get to right dosing. Has anyone had experience with inositol (along with the abx) with regards to intrusive thoughts ocd? We are also going to re-examine the abx on our next visit in 5 weeks. Doctor has mentioned doxycycline....anyone have success with this one? I am not opposed to low dose SSRI if we need to go that route...guess I am just trying to see if the abx course has runs its life as we are not getting the quick response that we initially got upon original onset back in early 2014.
  3. Well, we have gotten our Myco P igg numbers down from 2500 range in 2/14 to most recently 860. A good portion of that time was off of antibiotics at that. Our doctor is no longer too concerned about the myco p and apparently it was able to to come down significantly without ABX protocol. My ds (14) has mostly just had the OCD thing going on and the flares have always resulted in a major uptick in intrusive thoughts. For the past couple of months, he has been stuck on scrupulosity OCD....so we decided to go to our stand-by abx (azith) and , unlike other flares, they seemed to have no effect. Doctor switched us to biaxin...still nothing at all (maybe even worse) even after 3-4 weeks. Went back to azith and nothing. I would like to come off altogether and see how we do on the inositol and other supplements we use. Anyone come off abx when they see no improvement?
  4. Has anyone had experience with minocycline for myco p? When our journey began and we started the abx routine, my ds 14 was on azith. We saw results pretty quick and saw the OCD stuff ramp down significantly. We stayed on azith for couple of months and just kept on hand for flare ups (which we did have a couple of big ones). For the last few months, we have been stuck on scrupulosity ocd and we just started a new abx, biaxin, to try and bring down this flare. After one month..it has not done too much. I don't know if we could go back to azith since we had been off it for awhile or if we should request mino. Any feedback appreciated.
  5. Definitely keep us posted as my DS 14 has high myco p (igg) and the main issue over the past 2.5 years has been intrusive thoughts, which have been mostly of a religious scrupulosity variety over the past several months. When we first started on ABX back in 2014, he seemed to get pretty fast relief from azith and we stayed on for 1-2 months and came off...only using when he had flares. This past flare starting in February, we had asked to switch up abx and started biaxin....which has brought zero positive results thus far. I do agree with you on the gut health and we do probiotics daily whether we are on abx or not, along with omegas. We also use Vitamin C/D for immunity. Good luck to you....let me know about the oils as we are about to start on some of these as well.
  6. This is on my list to ask doctor about for ds when we go back next week.
  7. We first got PANS diagnosis in early 2014 and our trigger was high myco p. Our doctor put son on azith and we stayed this course for about two months and titers were brought down fairly significantly in those two months. We also saw vast improvement in the OCD intrusive thoughts which has always been our primary symptom. We weaned off after about 4-5 months and just kept azith on hand for flares...which we had a major one later that year. Every time, we introduced a short course of azith, we would see a quick response. We continued to do probiotics and omega and multi-vitamin daily. Well, forward to the start of 2016, son had major relapse with OCD intrusive thoughts (primarily scrupulosity OCD) and we are now seeing both the obsession and the compulsion pieces together. We had his numbers tested last month and his myco p had come down even more than the test in 2014. They are now under 1000.....so this is about half of where we started, but still have a ways to go. After researching, I asked Dr to try Biaxin. He seemed to respond pretty well for the first couple of days...but after two weeks...it is much worse. I wanted to know if anyone had gone from azith to biaxin and back to axith again. Also, has anyone done intensive therapy at one of the OCD centers like Rothman or Rogers or are there others?
  8. I did reach out to Rogers this week and found that their IOP for adolescents typically runs 6-8 weeks. From what I am reading on the previous posts, Rothman offers a 3 week intensive. For those with experience or knowledge of either program, is one more superior in hitting the OCD than the other. Sounds like they are both very solid programs, just structured a bit differently. We are in the Dallas area and was hoping that I could find an IOP in this area, but looks like Houston is the closest. There program typically goes 4-6 weeks according the the website. The OCD has heightened a great deal over the past couple of weeks and we are hoping that the new abx will knock down a bit. Is it best to get some of this lowered to have better results with therapy? In a recent visit to a therapist who works with PANS/PANDAS kids, he was also in somewhat of a heightened state and he left the office not wanting to ever do that again.....although I know this therapy is difficult and you have to go through some struggle to get better. It's a fine line as you want them to push themselves, but you don't want the therapy to backfire either. Guess this comes in finding the right therapist and it sounds like both Rothman and Rogers have this in place. Any other places to consider?
  9. The ACT therapy is very interesting. I have recently read and heard more about mindfulness practices. In a heightened state of OCD, his last session with a therapist (one we had seen months earlier) was way to upsetting for him. I don't know that a once a week session is going to be as effective as a weekly visit and am researching some of the recognized programs to consider once he comes out of this exacerbation like Rothman, Rogers, or possibly Houston OCD Center as we are in Dallas. Anyone have personal experience with these clinics or others to consider. We are not liking for the thoughts to totally disappear but for him to be able to disregard and move forward quickly.
  10. I totally am with you on the local therapists wanting to take several sessions "gettting to know you" and yet charging their normal $125-165+ rates each week. I am very interested in learning about the Rogers and Rothman programs. I just want to give my son some relief from the non-stop intrusive thoughts and give him the tools to be equipped to handle them better when they come on as they will even when the PANS underlying stuff is calmed. Does anyone have any feedback from the other locations? We would most likely look at doing a one week intensive and I like the fact that we may have a chance to meet other families and gain some support from them as well. Sounds like the programs have been highly effective and really provide a good foundation to help the kids/teens deal with the OCD stuff. Does anyone have any feedback on any of the other locations, even though it seems that Tampa is the main site and where most have gone? I am definitely interested in more and would rather spend some money and get some intensive help that may be more beneficial than weekly sessions that go on and go and may not even tough the surface for 4-6 visits or more.
  11. Our son (14) has been dealing with intrusive thoughts OCD for the past 2.5 years. Our PANS journey (as ours seems to be mcyo p triggered) began in the fall of 2013 with sudden onset of these thoughts. They initially ran the full range of topics (violence/harm, sexual, etc). This obviously upset our son as it was totally not his character. He responded almost immediately to abx and we things settled for awhile and then we hit a major flare in the summer of 2014 and have had a couple of blips since that time. Each time, we start back up with short course of the abx. The thoughts have never gone away, but he has not been in distress. However, we seem to now be at point where he is stuck on the scrupulosity OCD (religious nature). His Christianity is important to him and he is now at a point where even the talk of other religions causes him anxiety and makes him question his faith due to the thoughts and it distresses him greatly. It is clear that he is going to have some periods where the thoughts flare even once we get the immuno issues under better control and we want him to have the proper tools to be able to cope and manage without the great distress or the compulsionary actions (like he draws crosses pretty regularly and has to touch his bible sometimes during the day when thoughts invade hard, etc). I would love to hear more about Rothman and Rogers (how to they differ? Are there other locations outside of south Florida?). I do think that a more intensive program would work better than a weekly 45 min session with the therapist as he just feels that he is being pulled to yet another appointment. I think it would be good for him to know that other kids also suffer from OCD and are there to get help as well. Any feedback is much appreciated.
  12. Azith originally was prescribed in our PANS journey back in 2013. WE stayed on it for several months and we actually saw good results in bringing down the OCD/intrusive thoughts almost immediately. Our issue turned out to be high myco p and it did bring it down 800 points in the first 5 months and we continued on for a few more months before going off. When we have had blips, we do to azith 500mg for 3-5 days and it seems to help. Last week, we did the same as we started to see a flare up of the intrusive thoughts, but it seems to be making worse. I don't know if it is herx, but we asked for a new antibiotic to see if it could go in an wipe out the rest of this myco p any more effectively. We are starting on biaxin this weekend. Anyone have any experience with this? Also, doing nasal spray, NAC, turmeric and vit c to help with inflammation.
  13. We just had a session with a therapist who has worked with many PANDAS kids/teens and my son (14) walked out of the session with much more anxiety than he went in with. His main issue has always been the intrusive thoughts and they have recently become more non-stop and the last several days have been really heightened. He has been parked on the scrupulosity based OCD (religious based) and it is very distressing for him as he values his Christian faith. They say the OCD hits hardest in those areas that are valued by the person. Anyway, I can see how pushing through and contunuing on with CBT/ERP can be helpful in getting through the worst ....but I have also read that doing therapy in a heightened state of anxiety (as mentioned above) can also be more damaging than beneficial. Just trying to decide on best course going forward. Also hoping new antibiotic/supplement protocol will help with underlying causes.
  14. PANS came on the scene for our DS back in late 2013 with sudden onset of intrusive thoughts OCD. Tested neg for strep in both swab and blood tests. Finally came to find that myco p was really high and started on azith which seemed to initially bring relief quickly. Stayed on it for several months and have used it for some flares during the past couple of years. My son, 14, is now having a real tough time with some scrupulosity ocd thoughts and the azith seems to be making it worse this time. Of course, it would also be allergy related. We are having both the igg myco p and the IgE tested again as these two markers were high at last test done in 2014. Also doing another lyme panel (this time through Igenex). Trying to see exactly where things stand. We did just get a new script for biaxin tonight that we will start tomorrow. Also, Dr. R put us on NAC, turmeric, and vitamin C to help with inflammation We also will continue omegas and probiotics. Anyone have results from biaxin?
  15. In this last week, ds (14) has seen major uptick in the religious OCD. We have a session with CBT professional yesterday and it was very difficult for him. I still think the ERP would be good for him and think that we need to push through to break through this OCD as it distresses him greatly. He can't even hear or speak of other religions and questions his Christian faith. I guess its true that the OCD hits hardest at those things these kids valu as he always tries to do right and valus his faith. Just saw Dr. Rao our immunologist and swithched to Biaxin and also he gave us turmeric, nac, and vit c. We will also continue with priobitoic s and omegas. hopefully, we can bring down some of what is causing the flare up. i am still wanting to conitnue the ERP even though initially it may increase anxiety. . If we stop, I am afriad we will not pick it up.
  16. We started on the PANS journey two years ago with a sudden onset of intrusive thoughts. The doctor ruled out strep, but we did come to find that he had a high mycoP level. With antibiotics, our son saw a great deal of relief. However, he will have periods where they come back hard & fast. Once we start the azith, they seem to calm within a couple of days. However, he has been dealing with scrupulosity OCD for several weeks now and there will be times when visibly upsets him or he will be mouthing prayers and doing other acts to help him overcome these thoughts. I have reached out to a therapist here in our area of Dallas that has dealt with many PANS/PANDAS patients and the OCD triggered by them. I wanted to know if any of you have seen a decrease in symptoms or level of scrupulosity OCD with addition of antibiotics when it seems to pop up after being at bay for awhile.
  17. When we first saw our immunologist (PANDAS specialist) several months ago, he did a complete blood count including lyme, myco p (which we were very high in IGG), white/red blood cell, etc. Recently he did another test to include the IGE (allergies) and Vitamin D count as we were initially very low here. We are looking at visiting a psychiatrist in the area who has worked with PANDAS patients. He also does a full blood work up to include the neurotransmitter testing. I have read pros and cons about this test. Anyone have any firsthand experience on this one? The test can get costly as our insurance only picks up small portion, so I want to make sure that what we do is going to be helpful in helping with son's OCD (Pans related) and also anxiety/adhd.
  18. My son, age 13, has been on a regimen of azith daily for several months now. He has been doing 250mg daily until the latest flare when he was moved up to 375mg. We also added 10mg Prozac. These two seemed to ease the intrusive thoughts OCD (our primary and pretty much only symptom of myco p) for a couple of weeks until we hit the fan again and the FLARE was even worse. The immunologist once again upped the azith to 500mg daily and recommended we add turmeric to the NAC, Vit D, and probiotics, we are doing already. Has anyone seen an improvement adding turmeric to the mix? He said that he has many PANS/PANDAS patients who have really seen a big improvement when turmeric was added (particularly to the NAC). Also, if the 500mg does not bring improvement...we will look at moving to doxy. Anyone have experience in this switch?
  19. We started on 250 azith last fall for high myco p (iGG over 2300). We saw good initial results in terms of our major issue, intrusive thoughts. We had a few minor flares along the way, but nothing like initial onset. However, last month, we had a major flare that would compare to initial onset. The pediatrician suggested stopping azith and double down on probiotics. He also gave us a script for 10mg prozac. The following week, the immunologist suggested we up dosage of azith to 375mg since it had brought the myco p down over the prev few months. We decided to do so because of the initial success with abx in the fall, but after two weeks on the increased azith and prozac, we have hit a flare from and the intrusive thoughts are almost non stop for our son from self harm/ harm ocd to sexual thoughts to religious thoughts to really anything. He is 13 and hormones are going nuts now too which makes it tricky. Has anyone found that coming off the azith has helped with giving gut a chance to recover or has adding in a second abx helped or a different SSRI? It is confusing when you are getting two conflicting views from docs.
  20. Well, we have now been on increased azith dosage (375mg daily up from 250mg daily) for just over one month along with a 10mg dosage of Prozac. For about 10 days, this combination (or one of the two) seemed to decrease the flare we were having from intrusive thoughts OCD a bit. However, the last couple of weeks has been pure again. The intrusive thoughts are at their all time high since we first started battling PANS (ours stems from myco p and not strep) last fall and our son is almost to the point of non functioning as we face the intrusive thoughts basically from morning until he falls asleep. In the last week, it has centered more on harm and self harm OCD, but also has some scrupulosity and sexual thoughts thrown in the mix as well. We have follow up with immunologist on Wednesday as we did find out recently that his IGE was high. Don't know if this is in anyway tied into this MAJOR flare or if we need to change abx or ssri or ditch either or both of them. I am not thrilled with using an SSRI (Prozac), but felt if may ease the thoughts. However, I don't know if it is truly helping and going up to 20mg as prescribed by ped. was way too much for him...so we have stuck with 10mg. It makes him pretty hyper as well. Has anyone found a natural supplement that has been effective or another ssri that has worked? Has anyone gotten any positive results from supplements or other ssri or combo of the two. I believe that we may have run the course with the azith...so I am hoping that immun. will be open to changing or adding another abx as I have read this is sometimes needed. Our son 13 has been on azith for almost 10 months now. We are trying to put together a plan of action to get him the help needed so he can live life again. We are currently doing: 10mg Prozac, 375 mg azith, NAC (1200mg), omega, multivitamin, and probiotic.
  21. My son (13) had sudden onset of intrusive thoughts OCD last fall and, after researching, I took him to Ped. and talked with him about PANDAS. He did blood test and strep titers were well within normal range. Knowing that something just wasn't right with this sudden onset, we found an Immunologist who had worked with PANDAS. He did a complete work up that showed extremely high IGG and low Vitamin D. He started us on 250MG Azith along with NAC and VItamin D drops. Within 48 hours of abx, we saw major decline in intrusive thoughts. He has had some small flare ups through the past 8-9 months since start, but nothing major until July. We had major uptick in intrusive thoughts back to level of first onset (maybe even worse). Went back to Ped and Immunologist, we started him on 10MG Prozac and increased dosage of azith to 375 mg. We saw some improvement within first week or so. However, that only lasted for four weeks and we are not having another flare or possible herxing. We are doing probiotics, omega, vit c/d supplement,and multivitamins as well. Does this sound like a flare or herx? We have had one CBT session and will continue with this to develop strategies to deal with re-occurences of the thoughts. Anyone else have symptoms return so soon after increase in abx or addition of Prozac?
  22. I would be interested in the list of doctors (GP or specialists including psychiatrists, neurologists) that are in the Dallas area. We currently see Dr. Rao in Plano and we have been pleased with him. Looking for an adolescent psychiatrist. and possibly a psychologist. I would also love information on any support groups in the Dallas area.
  23. Our son, age 13 now, came on with sudden onset of intrusive thoughts OCD last fall. It was extremely sudden and over the next several days, he was spending more and more time confessing all of these crazy thoughts that were totally out of character. Our pediatrician tested for titers at our request and they came back normal. In researching PANS/PANDAS online, we found the name of an immunologist who tested for myco, lyme, CBC, and specific vitamin levels (specifically D). Our son had extremely high myco P (igg) and very low vitamin D. He put him on Azith and vitamin D supplement. After just 2-3 days on antibiotic, the thoughts subsided to a very nominal level. He has continued to do well with a few minor hiccups that were manageable until the last couple of weeks. Around the first of July , he all of a sudden had a huge flair and the intrusive thoughts have become almost debilitating on some days. The thoughts range from a sexual nature to violence to thinking he did or said something offensive. Again, things that are totally not in his nature. He is constantly confessing. We are preparing to move to a city about 45 minutes away to be closer to husband's work, so maybe this is a trigger. He is also 13 and in the stage where hormones are going wild...so this may play a part in the flare. The immunologist had upped the abx strength and we have started on probiotic. The myco was recently retested and it is still at 1500 (but down 800 from where we started). I hear it can be tough to knock out myco p. We are doing multivitamin, omega, probiotic, and additional C & D vitamin supplement. After this flare started, we got a script for Prozac. Started at 10mg for one week and doctor instructed to increase to 20mg after first week. I think we increased too fast and may not need 20mg as I hear that kids with PANS/PANDAS often respond to lower doses. I would prefer not to do the Prozac at all but rather use 5-htp or something natural, but am trying to give it a chance to work. We are starting CBT next week. Anyone have similar experience? Any advice or recommendations are definitely appreciated.
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