Ellen

Yes, Dr. Nancy O'Hara is an excellent DAN doctor and she and others in her practice have played an essential role in helping my son. (I posted his story a few weeks ago on this forum.) Simon started with them over a year ago and we still see them regularly. The treatments that have been most effective for him are his gluten/casein free diet, numerous supplements and neurofeedback. He still has a ways to go before he is fully recovered, but he has made great progress since we started with Dr. O'Hara's group. Our next step is to see Dr. Latimer in August. I am very hopeful that she will be a big help as well. Ellen

Simon has many points in his day where he stares off into space and when that happens it is hard to get his attention. Sometimes if the OCD thoughts are very negative he will become distressed and whine or scream after the staring episodes. At other times he can shake it off and just go back to whatever he was doing before he got distracted by the OCD. He is often able to tell me what the OCD thought encompasses after he has the staring episodes. They usually center around some kind of negative experience or false perception of himself. For example, about two years ago, when his PANDAS became severe and his OCD started to become more thought-oriented rather than ritual-oriented, his primary obsession was the worry that he was not a nice person and offended people in the past or would do this in the future. It was not logical because most people who know him would describe him as very nice and polite. More recently that obsession is in the background, but one of his primary obsessions now is that he is stuck on the memory of a close friendship that ended after it went bad a few years ago. It was a distressing experience for him when it happened, but at the time he seemed to handle it well and move on to make new friends rather easily. He only got the experience stuck in his brain much later and after OCD entered into his life. Although there is much that is positive about him and his life, the OCD seems to get him stuck on whatever he can find that is negative. In the beginning my husband and I were not as familiar with how to respond to OCD so when he did articulate these kinds of thoughts we would try to reassure him and/or talk him out of his obsessions. Over time and through the help of his therapists, we have learned to refuse to engage in any conversation related to OCD topics. Trying to make him feel better only feeds the obsession. Also, sometimes we are able to get him distracted and convince him to do something constructive. There are other times when he is so stuck on the negative thoughts and so agitated that he will scream and have meltdowns. We have given him consequences whenever it has gotten bad enough that he starts to get destructive with things in our home. This has not happened in a long time, but when he was on SSRI medications awhile back, it happened quite frequently. But those actions were not rituals. They were outbursts related to the frustration of having so many negative thoughts stuck in his brain. I have visited some forums on OCD and also done a lot of reading, and I am always open to new suggestions and willing to try whatever I think might work well for him. One strategy that I have seen is to encourage him to let the thoughts float by and say "oh well" to himself rather than try to get rid of them. My husband and I have tried telling him this, and sometimes he is open to hearing it and it does help. There are other times when he is too agitated to listen, so I guess it just depends on the particular day. I haven't found any suggestion that always works, but I continue to keep searching. If you come across anything that helps with your son, please let me know and I will do the same. Does he tell you what his thought encompass? My son has the "obvious" OCD of repeating questions over and over even though the answer is obvious, has many eating rituals, and he does other tings that I can't understand why. I wonder if some is still dirt oriented. I thought that had passed w/ the first PANDAS episode, but perhaps some resurfaced. Anyway, those are easier to eliminate. However, I do think he has OCD oriented thoughts as well. He'll stare off into space and when I look into his eyes I feel like I can sense the thoughts. If that makes sense. Like maybe he's do a checklist in his head, he feels he needs to be thinking something specific, etc? I really don't know, he won't tell me what he's thinking. But right now, I'm at the stage of dealing with the "physical" OCD I can see. I will deal w/ the thoughts later. I will definitely let you know if I come across info on it. Have you also visted forums specfically for OCD to learn from adults who have had that issue and have learned to overcome it? One final thing, the other day he watched a tv show that gave him bad thoughts before going to bed. He said that every time he tried to make it stopped, it showed him the pictures again. I was telling him to yell at it and tell it to stop. He said when he did, this ting would appear again. He was even envisioning it choking him. He began to personify these thoughts. It was the first time he had done that. I felt so bad for him. He had me yell at the thing in his head and tell it to stop. Then he would pause and say "Mommy, it's doing it more often now". Like you said, the more he tried to make the thoughts stop, these thoughts fed off of it and came back stronger.Finally and a couple hours, he fell asleep. I still wonder if OCD took advantage of that show and did that to him. Luckily, he hasn't brought it up again.

Thanks for your suggestions. My son has a possible fish allergy (I am not certain of this so I could have him tested), but if he tests allergic, do you know of any sources of DHA other than fish. Also, could acupuncture be helpful for kids and teenagers with PANDAS? (quote name='Eliza' date='Jul 7 2009, 01:16 PM' post='34732'] My 5.5 y.o. son has PANDAS and I am an Acupuncturist and nutritionist. The list of supps you have is good, but DHA is very critical to to cognitive function and repair. I recommend Pharmax's Berry high DHA fish oil emulsion which has prebiotics and blueberry in it. It is very pure- as is carlson- but much easier to get down for kids who can;t tolerate the fishy taste or the oilyness of the oil. The other supplement that I have found essential is Behavior Balance DMG by Davinci Labs- the PILLS -NOT LIQUID, this is a formula that has L-carnosine and Dimethyl Glycine which help, L carnosine is an amino acid that boost's immunity and brain function and reduce's inflammation, DMG is a precursor to many amino acids and neurotransmitters that aid in brain and nerve function. GABA can help with Anxiety and insomnia- bu in high doses can exacerbate, so make sure you are dosing appropriately. There are, in actuality MANY things you can try. My best advice is to find a good naturopath or DAN who is wiling to think outside the box nd attack the PANDAS rom all angles- the behavioral/neuro angle, the inflammation angle, and the immuno modulatory angle. You need to hit all of these factors to have a truly preventative scenario. Also, Bach's Rescue Remedy for rages and episodes can be very helpful in the moment. They make a kids one with a base of glycerine. Good luck, if you have any more questions feel free to ask. I don't want to overwhelm you!

I understand what you are saying about treating the OCD as OCD because I have come to realize that the OCD part of his disorder may be permanent. In the beginning, Simon's OCD was more about rituals (asking questions, tapping, making things even, etc.). At that point he was responsive to the CBT from books and therapy. After his negative reaction to the vaccines, his OCD got worse and started to become primarily thoughts and his main problem is that he can't focus on things because he gets distracted by unwanted thoughts throughout the day. He is learning to stop asking questions related to these thoughts (through therapy and through our refusal to answer any question that sounds like an OCD question), but he is still plagued by these thoughts and they make him very spacey and often agitated. So this type of OCD seems to be more difficult than OCD that is associated with rituals because he can't stop the thoughts and the harder he tries, the worse it gets. Most of the books I've seen are focused on CBT for ritualistic types of OCD, which is less of a problem for him now. If you or anyone else knows of any books that are more oriented toward coping with the thoughts, please let me know. He has tried flooding (which is a strategy in which he purposely exposes himself to the obsessive thought for an extended period of time), but this tends to make him more anxious and usually does not help. I am open to reading any books or articles that deal with primary thought based OCD because I think that is what will be most helpful for him. It sounds like you are on the right track with slowly weaning your son. Best of luck.

Do you know there are any other sources of EPA besides fish?

I did not know this about DHA. I think the vegetarian form may be the way to go for us because of the possible fish allergy. Thanks.

You are right. It is a saga. I am hoping this drama we have been living will be one with a happy ending. Thanks for your suggestions. I have wondered about whether Simon should be on Vitamin D in addition to his other supplements, and I think having his levels checked would be a smart move. We are doing flax oil instead of fish oil because of a possible allergy to fish. He has not been officially tested for this allergy, and this is something I could do some time. Does fish oil have a specific advantage over flax oil? We did try full strength antibiotics (zithromax and others but not amoxicillin because he is allergic to that) for many months after Simon was diagnosed with PANDAS. It did not help, and we eventually moved to a preventative dose of Zithromax when the full dose was starting to cause stomach distress, even with the probiotics. So I guess this treatment does not work in all PANDAS cases. You asked about the dr. who treated him with plasma exchange in Philadelphia. This was Josephine Elia of CHOP. She was recommended to us by Dr. James Leckman of Yale who is not far from us and who was one of the experts who evaluated Simon early on in his illness. We made numerous three hour drives back and forth to Philly last summer and we had to stop treatment after about 70 percent of the goal was reached because of problems with his veins. Even though it was not the dramatic fix we hoped it would be, I did feel the plasma exchange was worth it because we did see some positive changes about two months later. At one point, before Simon started plasma exchange, we had considered IVIG, but when his IGA test came out very low his DAN doctor advised against it. According to her and others, the risk of an allergic reaction was too high. The Ibuprofen suggestion is interesting, but because Simon has a very sensitive stomach, I am not sure I would want to try it with him. At one point he was on Minocycline (which is also supposed to have anti-inflammatory properties), but it did not seem to help.Thanks for the info about Madeleine Cunningham. I will check it out.

I didn't mention this before, but after we got the diagnosis of PANDAS we tried various antibiotics including zithromax at full strength for many months (he is allergic to Amoxicillan so we stayed away from that), but it was not really helping and we eventually moved to a preventative dose when he started to get some stomach distress. I do feel we gave the antibiotics a fair try. I wish it had been more effective for Simon. Thanks very much for the suggestion. I guess antibiotics do not help in all cases.

Thanks for replying so quickly. It helps to know I am not alone. I did not there were so many other children who had similar reactions to the chicken pox vaccine. Please keep me informed if you find anything specific that you are now working on that helps with your son's ocd. I will mention your suggestions to my son's DAN doctor. I have not heard about choline helping with OCD behaviors so that is something I will look into. Many thanks again.

Hi, I am new to this website and would like to know if anyone has suggestions for supplements or other natural therapies that might be helpful for OCD. My 12- year-old son Simon has a severe case of PANDAS that began two and a half years ago after a strep infection and became much worse six months later after he received two vaccines (Chicken Pox and Hep A) during a time when his allergies were acting up. Simon's PANDAS story is so long and complicated I could write a book about it, but I will try to give only the most pertinent details here. The year following the vaccines was devastating for him and for our entire family. Before this he was a very well-rounded, high achieving, child who was an A student, an avid reader and gifted writer, who was considered a role model by his teachers and who loved learning and was enthusiastic about everything. He did not have any behavioral, focusing or psychiatric difficulties of any kind. When Simon was five, we learned about PANDAS from a neurologist because he had developed mild tics that seemed to be associated with strep. My husband and I noticed the tics would eventually disappear but they would often flare up again whenever he contracted strep, which was about once a year. The tics were not a major problem, and they did not interfere with school or his life in any way. But all that changed two and a half years ago at the age of ten, when he developed some rather intense OCD after a strep and complained of curse words and other intrusive thoughts stuck in his head. At that point we took him to see an OCD psychologist, and she suggested some cognitive behavioral strategies that seemed to help. Simon was receptive to the therapy and was learning ways to keep his OCD from taking over, but at the same time my husband and I noticed he was having a harder time getting homework done for school and was losing interest in fiction reading. However, he graduated fifth grade with all A's on his report card and at the beginning of the summer, the psychologist thought he was doing well enough to take the summer off from therapy. In August of that year, Simon received the Chicken Pox and Hep A vaccines (the doc told me that it was not a problem that his allergies were acting up) and he started middle school a week later. Within three weeks of the vaccines, there were dramatic neuropsychiatric changes in him and it was as if a stranger had taken over our son. He developed insomnia, major hyperactivity, intense anxiety and pacing, an explosion of tics, facial contortions, and his OCD was back and worse than it had ever been before. He was not doing any homework (which was completely out of character for him), and the OCD would cause him to go into trance-like states and be unresponsive for several minutes at a time. He was evaluated by a neurologist who ruled out a seizure disorder and diagnosed him with strep-linked Tourettes, OCD, and ADHD. Within the next month the problems got even worse and he became impulsive and started having rage attacks. We saw numerous experts and eventually most agreed that there was a lot of clinical evidence to support the theory that Simon's neuropsychiatric difficulties were triggered by strep and dramatically worsened as a result of the vaccines. For several months we tried treating the OCD with SSRI medications, but that only made things worse. His behavior became so impulsive and out of control that it led to seven psychiatric hospitalizations in a period of six months. It was a nightmare you would have to live through to understand, and I still can't wrap my head around the fact that this actually happened. We eventually realized that SSRIs were not the way to go with Simon, and things did not improve until we got him to a DAN doctor and she started him on a gluten and casein free diet along with numerous supplements. Since he started this diet in May of 2008 he has been much more stable and has not had to be rehospitalized. Since then he has made very slow but steady progress from a number of alternative treatments. He had plasma exchange in Philadelphia last summer, and although we did not see immediate results, we did notice some good but not dramatic improvements a couple of months later. When he was at his lowest point in this ordeal, during the time when he was in and out of hospitals, he had given up all of his creative interests, was unable to focus on anything for any length of time, and would alternate between trancing out and screaming all day long. Now after over a year of seeing the DAN doctor and doing alternative treatments, he has made some great progress. He is able to do homework (with lots of help from my husband and me), he has resumed most of his creative interests, and after a year of private Hebrew tutoring, he just had his BarMitzvah. So he really has come a long way, but his OCD can still be a major problem sometimes. He still struggles with fiction reading, cannot alway focus on what people are saying to him, and there are still some days when the intrusive thoughts cause severe agitation and frustration. My husband and I are happy with the progress he has made, but we really would like to see a more dramatic improvement with the OCD. Several months ago, our DAN doctor suggested neurofeedback, and so far he has had about 20 sessions. I think it is helping him cope better with the OCD, and I would definitely recommend it for anyone who struggles with anxiety. It is one great tool in the toolbox, but it does not eliminate the OCD (nothing has so far and I don't know if anything ever will). I want to know if anyone has any suggestions for supplements or other natural therapies that have proved to be helpful for anxiety in general and OCD in particular. Right now he still sees the DAN doctor and he is on 250 mg of zithromax twice a week for strep prevention and a number of supplements including taurine, GABA, Vitamin E, Flax Oil, probiotics, I-Carnitine, Acetyl-L-Carnitine, Digestive Enzymes, Pycnogenol, COQ10, Vitamin C, and zinc. At one point we tried 5HTP for the OCD, but I stopped it after a week because it seemed to worsen the problem. I am planning to ask the DAN doctor about additional supplements or vitamins to try, but I thought I would try this forum first. Any success stories or other info about effective treatment for OCD would be appreciated. =