Ellen

T. Anna, thanks for asking about Gary. I haven't been on the forum in awhile. I also just saw your message and will PM you. Gary is doing a bit better and he is now in a place that we think could be very helpful. I will try to post a more detailed update on Gary some time soon.

This is Gary's Mom. I am bumping this for those who didn't see it. Powpow, thanks so much for supporting Gary's photography business. He appreciated it very much. Some of the old timers here may remember the PANDAS website for kids that Gary created several years ago, when he was only 13. Gary has recently turned 18 and is still struggling with many impairments. His shutterfly photo and photo gift site has been another great creative outlet for him, so please consider supporting this business venture and spreading the word to others as well. We are approaching the holidays soon, and this would be a practical way for people on this forum to take care of some of those gifts and support a young adult with PANDAS at the same time. Feel free to PM me if you have any questions or would like an update on Gary. Ellen

Hi, my name is Gary. I am Ellen's son. I have had PANDAS for seven years, and a five years ago I developed a PANDAS website for kids called Guide to PANDAS Syndrome. Now I have a business where I sell photos and photo gifts as merchandise. This has been a good creative outlet for me, especially since I love taking photos and sharing them with people. If you are interested in buying anything, here is the link. Please check it out and feel free to share this with friends and family through emails and/or facebook. The prices are reasonable, and there are photos from a variety of categories. I would really appreciate your spreading the word and supporting this venture. http://www.shutterfly.com/pro/007076833575/PhotoKing

Brads Mom, our stories are similar and I would love to contact you and talk. My son is also 17 with schizophrenic symptoms, a history of frequent streps, lyme, ear infections, and he had a strep-triggered PANDAS onset at the age of 10. He is currently in the COS study at NIH, and we are working on getting the COS team and Dr. Swedo's team to collaborate on his case. When we last saw Dr. L 10 months ago, she felt our son was a candidate for IV Rituximab, but at the time, Georgetown had not yet established the protocol for these treatments. I'm glad to know that Dr. L has put that in place. My son has severe OCD with delusions and completely debilitating auditory hallucinations, paces constantly, and has not been able to function outside of a hospital setting for over two years. He is a non responder to all antipsychotics including Clozaril (used as a last resort for treatment-resistant schizophrenia), so we plan to connect with Dr. L some time soon to look into the Rituximab option again. He does have a positive CamK, and in the past we have had partial success with IVIG and plasmapheresis. Pow Pow has been a good resource for me, and I can connect you with others whose children have had IV Rituximab. I will message you with my contact info. I have not posted on this forum for a very long time, but your story has really hit home for me. Best of luck at Gerogetown. I hope we can talk soon. Ellen

I think calling your district rep is a good idea. If there is no DAN MD in your state, then maybe you could look into finding a Naturopath who is willing and able to do this. Ellen The neuro is not a pandas specialist but was listed on the pandas resource network list as a treating doctor, we had a three month wait to get in to see her so we will have to wait and see how it goes. I just checked the autism sites and the only Dan dr. Listed in ms is not a MD. So that will not work for us. The state requirements for exemptions seem very strict. I may call our district rep. And see what I can do.

Missmom, as a Mom of a PANDAS child who was severely injured by vaccines, my advice to you is to do whatever you can to get the medical exemption. Seek out a DAN doc if necessary. We have a DAN doc who has been willing to write medical exemption letters for both of my sons (one has severe PANDAS with a recent schizophrenic presentation and the other has severe allergies, asthma, a high CamKinase, and very mild tics, but no real PANDAS symptoms, probably because we stopped vaccines for him and he is on prophylactic Zithromax, prescribed by the DAN). Our DAN has been so helpful to us in many many ways. I can tell you that my severe PANDAS son is not doing well and has been in the hospital for many months. He was a once very normal, high achieving boy who presented with OCD after a strep five years ago, but severe OCD along with psychotic features and many other bizzare and unusual symptoms started after he had the Chicken Pox and Hep A vaccines seven months following the strep. Since the vaccines he has never been the same. Back then there was nobody to warn me about the risk of vaccines for kids with PANDAS, so all I can do is warn others by sharing our tragic story. My husband and I are both certain that the vaccines played a major role in causing his PANDAS to go from mild to severe. If I were you, I would keep searching to find someone willing to do this exemption, and from my experience, I know that DANS can be very helpful with this and you don't need to have an autistic child to get an exemption. Ellen

I would not vaccinate if I were you. I know of a girl whose PANDAS became much worse after she got the pneumovax. I know of others with PANDAS who got worse from the meningitis vaccine. My son had his first PANDAS episode after a strep when he was ten, but he got much much much worse after receiving two vaccines (Chicken Pox and Hep A) seven months later. In his case, the consequences have been devastating. You were smart to develop a mistrust and opt out. When my son had the vaccines, it was five years ago and I did not have anyone to warn me that this could be harmful for kids with PANDAS. Even though my son had many interventions and a few years of good improvements, setbacks caused by a broken arm and the puberty process eventually led to a psychotic break and he is currently in the hospital with schizophrenic symptoms. I do believe the vaccines he had five years ago set all of this in motion; he has never been the same since and the most obvious sign that the vaccines did this was that he was having trance-like spacing out episodes that could last up to five minutes at a time along with many other major unusual symptoms within three weeks of those vaccines. Don't do it. There is nothing I can do to undo the damage that was done to my son from these vaccines (although we keep trying), but I have made it my personal mission to warn other PANS parents and anyone else with autoimmune issues about the risks. Please just don't vaccinate. It may not just cause a temporary worsening but a more permanent change as in my son's case. It is not worth taking the chance. Ellen

EAMom, thanks for this info. You make a good point about the possibility of nonstrep pathogens or strep (without the titers) in the tonsils. It is definitely something to consider. The article on Minocycline is really interesting, and even though my son was on it at times for lyme, we have not tried it since he developed the schizophrenic symptoms. I don't think we would have much to lose by trying it again; it will take a lot of hard work and persuasion to get the hospital doctors on board with this, but it is worth trying, especially if we don't get good enough results with just the Clozaril. I also want to further investigate possible treatment for schizophrenics who are positive for toxoplasmosis. I will look into it more and talk to my son's DAN doc about it. If anyone finds anything on this topic, please PM me. I'll try to post a new thread with an update on my son some time soon. Ellen Ellen, does you son still have his tonsils? Also, have they checked his Toxoplasmosis titers? have you seen this Ellen? http://www.independent.co.uk/news/science/scientists-shocked-to-find-antibiotics-alleviate-symptoms-of-schizophrenia-7469121.html here's a bit of the article: A cheap antibiotic normally prescribed to teenagers for acne is to be tested as a treatment to alleviate the symptoms of psychosis in patients with schizophrenia, in a trial that could advance scientific understanding of the causes of mental illness. The National Institute for Health Research is funding a £1.9m trial of minocycline, which will begin recruiting patients in the UK next month. The research follows case reports from Japan in which the drug was prescribed to patients with schizophrenia who had infections and led to dramatic improvements in their psychotic symptoms. The chance observation caused researchers to test the drug in patients with schizophrenia around the world. Trials in Israel, Pakistan and Brazil have shown significant improvement in patients treated with the drug. Also, re the tonsils...I don't know if I would count on titers to tell you if they were infected. It seems like so many PANDAS kids have strep w/out titers. Also, there may be non-strep pathogens hiding out causing problems in the tonsils. It's hard to say. There are a couple of PANDAS docs that recommend T/A, but not all. It's something to consider. There are kdis on this forum that have had normal sized tonsils removed, and they have wound up being shrunken from infection. Also, have you seen this article (probably?) http://www.theatlantic.com/magazine/archive/2012/03/how-your-cat-is-making-you-crazy/8873/2/?single_page=true not sure how to treat the toxo?

Very interesting article LLM. Thanks for sharing it. I will look into this more and speak to my son's doctors about it, since I believe his IGG positive result means there was exposure to toxoplasmosis at some point in his life and this could possibly be contributing to his schizophrenic symptoms. If this the case, I'm not exactly sure what this would mean in terms of best treatments, but it is worth investigating. We never owned a cat, but it seems that exposure can occur in a variety of ways. Ellen

EAMom, yes my son still has his tonsils. His strep titers have never been more than a little elevated and they are currently not elevated at all, so I'm not sure if removing tonsils would make a difference in his case. When we were doing lyme treatment, his LLMD checked for Toxoplasmosis and he was IGG but not IGM positive. But no treatment for this was ever suggested. We are open to any and all suggestions, so if you or anyone else has any ideas please PM me. So far we are not seeing any obvious improvements on Clozaril. Ellen Ellen, does you son still have his tonsils? Also, have they checked his Toxoplasmosis titers?

Denise, I recently had a consult with my son's DAN doctor, and we spoke about high dose vs. low dose IVIG for PANDAS kids with immune deficiencies. She has talked with several immunologists who treat PANDAS, and they are split on this issue. A couple months ago, I posted an update on my son, who had a severe setback last spring and is now dealing with not just OCD as the primary symptom but major delusions, hallucinations, and paranoia. In October he reached a point where he could no longer function at home, and we had to hospitalize him. In January he was transferred to a different hospital, which has a school on the premises and is more set up for a long term stay, and he has been on Clozaril for the schizophrenic symptoms since early December. We have been told that this medication can take up to six months to work, and we are trying to come up with a plan for IVIG if the Clozaril does not help or if it doesn't help enough. My son has had four high dose IVIGs over the past couple of years and only the first one was helpful. He has significant immune deficiencies (low IGG, low IGA, and low IGM), and his DAN is in agreement with those immunologists who feel that low dose monthly IVIG is better for PANDAS kids who are also immune deficient and that high dose IVIG can sometimes exacerbate symptoms for kids with these deficiencies. A few of the immunologists she has spoken to strongly disagree with this position, but my husband and are willing to try low dose monthly IVIG at some point after our son becomes stable enough to go for these treatments, since the last high dose IVIG he had did not help at all with the schizophrenic symptoms or anything else; it only made him worse. His DAN did say that if he responds well to the low dose, then we could gradually build to higher doses in time. I know that every kid is different in how they respond to IVIG, but if you are finding that high dose is no longer working for her, it might be worthwhile to try it this way. I would also be really interested in finding out from others on the forum if low dose monthly IVIG has been helpful for immune deficient kids and if so, how long it takes to start to see improvements. Ellen

Thanks everyone for all these responses. Since I posted this update, I have also gotten many supportive pms and emails. Many have suggestions, which I will keep in mind for a time when my son is well enough to live at home and/or travel to see new doctors. Even though we are taking a break from PANDAS treatments while he is in the hospital (and this could be a long-term stay that could last many months), I see the current psychiatric-medication-only course we are on right now as a temporary vacation from other interventions. I think at some point Clozaril may get him to a more stable place, but I don't see this as a cure of any kind. I am still hopeful that we can figure out the underlyling cause or causes and find treatments that will not just reduce but eliminate the schizophrenic symptoms. Lauren K, to answer your question, there is no family history of schizophrenia or schizophrenic like symptoms. I hear your concern, but it is my experience that most people who are dealing with PANDAS or lyme and coinfections do not see these symptoms. I'm not sure what combination of factors brought my son to where he is now, and I am eager to talk with Powpow and any others who might have a PANDAS son or daughter with similar symptoms, but most people I know who are dealing with PANDAS OCD may or may not see psychotic features, but do not have the kind of full-blown psychosis that my son is dealing with now. After four years of seeing just about everyone there is to see and trying just about everything there is to try, I feel that my son should be doing much much better.Many of the treatments that have worked well for others have not worked for him, and many of his doctors consider him to be a complicated and treatment-resistant case. But even though he is severely impaired right now, I believe that the bright, funny, creative and thoughtful boy (the same boy who at one point got well enough to develop a great website for kids with PANDAS) is still there.I will continue to welcome any additional posts or pms with thoughts, suggestions or links to info you might have that might help us get him back.l. We can't do that much now, but I'm taking it all in for later on, when he is back home and there is an opportunity to do more. Ellen

I have not posted an update on my DS 15 in a very long time. I had been waiting for things to get better in the hopes that there would be something positive to share. But this has not happened, and I feel it's time to share what we have been going through over the past year and a half. My son developed PANDAS after a strep at age 10 and things got much worse after he had vaccines several months later. He was hospitalized seven times when he was in the sixth grade until things slowly improved after numerous interventions and he went three years (until May of this year) without being hospitalized. Between 6th and 8th grade, he got to a point where he was about 80-90 percent recovered. I believe many things contributed to this including antibiotics, a gfcf diet and numerous supplements, two rounds of plasmapheresis, three rounds of high dose IVIG (only the first one seemed to help him), and neurofeedback. Although he required many accommodations in school, he graduated 8th grade with very good grades and the Rotary Club award for extraordinary progress, and we really thought he was on his way to a full recovery. Then he had a setback in the summer after 8th grade, triggered by an arm fracture that happened while he was in overnight camp, and things began to go downhill. We tried doing lyme treatment for a second time (we had tried it once before when he was in sixth grade), but things continued to get worse, and during his 9th grade year, he became more and more impaired until he was unable to do school work, engage in productive activities or function in a normal way. Beginning in April of this year, his OCD took a back seat to new and much more disturbing symptoms, major debilitating delusions and paranoia. I am not sure what caused the onset of the psychosis, but one of his doctors feels that a growth spurt and puberty, may have played a big role, and I am in agreement with this theory. Since April we have tried just about everything there is to try to fight this (including Bicillin shots, changes in antibiotics and supplements, another high dose IVIG in July, high dose antipsychotics, and homeopathy). But no matter what we did, he continued to get worse, and two months ago his delusions took over to the point where he could no longer keep himself safe and we had to hospitalize him again. He has been in the hospital since late October, and a couple of different antipsychotics were tried without much success. He is now beginning to respond to Clozaril, a last resort antipscyotic, which is often used for treatment resistant schizophrenics. So far the improvements are very very small, just baby steps, but we are hoping that at some point, it will reduce the delusions and get him to a point where he can function in a more normal way. For now we are taking a break from PANDAS treatments ( I feel like we have done all there is to do and tried all there is to try but nothing that has worked for him in the past seems to work in the present). Hopefully, at some point, when he is ready to come back home again, we can try something new. I am not sure if this is PANDAS mimicking schizophrenia or if he now has actual schizophrenia that began as PANDAS, but regardless of the cause, we are forced to rely on psychiatric medications since nothing else seems to help. If anyone knows of similar stories, of kids who started out with OCD as the prominent PANDAS symptom, and are now dealing with full-blown delusions/hallucinations/paranoia I would like to hear more. I am trying to figure out what may have caused this, how he got to this point where nothing we try seems to help, and what interventions to consider for the future. This has been a devastating year and a difficult holiday season for our family. But I am trying my best to remain positive and hopeful and keep thinking there is something that we haven't tried that will help in a big way and get him back to the high functioning, creative, funny, and happy kid he used to be. I know that boy is still there, wanting to come out and hoping somebody will have some advice that will help us get him back. Hope you will keep my son in your thoughts and prayers. Ellen

I have not actively posted for awhile because my son has been in a major exacerbation for several months now, and I am waiting for things to settle down and hopefully move in a more positive direction before I share the details. A friend of mine from San Antonio, Texas recently contracted lyme from a tick while she was vacationing in upstate New York. She had the bulls eye rash, and her doctor only gave her a low dose of Doxycycline for ten days. She has asked me for help in finding an LLMD, and she is willing to travel outside of Texas or even fly somewhere if necessary. If anyone has any suggestions for her, please PM me. Ellen

Sorry to hear about the recent difficulties you are having with your son. My PANDAS son has also been in a major exacerbation since the end of February, which is a story for a separate post when life begins to settle down. My younger son, who has only mild PANDAS tendencies but serious problems with allergies, especially right now with the high pollen counts, has been on singulair in the past without any behavioral issues. However, even though he has recently develop asthma and has to use an inhaler now, I have decided against putting him back on singulair. Our integrative DAN doctor, who treats my older son's PANDAS and my younger son's allergies, has had a few patients who have developed psychotic behavior while on singulair. She said there are others who do okay on it. Last summer she prescribed the granule form of singulair for my younger son, which she likes better than the tablet because there is no aspertame in it. However, I have been afraid to use even this form of it because of all that I have heard about singulair and the effects it can have on behavior. Both of my kids are currently on zyrtec, Nasonex and supplements for the allergies. For my younger son, it is still not enough, but I am doing all I can to find safer and effective alternatives to singulair. I don't think the benefits are worth the risks. Ellen

Rockytop, thanks for the heads up about the inappropriate posts that were put on Gary's website. I had no idea. I will be sure to let him know when he gets home from school so he can delete the posts. When Gary started this website last year, he put a lot of time and energy into making it a place where kids with PANDAS and their parents could feel safe and comfortable. It's sad that there are people out there who have to go and sabotage his efforts. After you posted a few Moms alerted me to your post. I appreciate how parents on this forum look out for one another and our kids. Many thanks! It's good to know that even though Gary has not been on his website in awhile, there is still some communication and email activity going on with some of the kids. I'm hoping Gary will want to get more involved again at some point. Over the summer he had a pretty major setback and then he started high school. It has been a bumpy road, and I have been wanting to post a specific update some time soon but I've been waiting/hoping for some lasting improvements. He has been seeing an LLMD who has him on an aggressive protocol of antibiotics (Biaxin, Amoxicillin, and high dose Augmentin) along with many supplements, monthly IV glutathione, and weekly Vitamin B-12 shots. After getting on the Augmentin in January we did start to see some good results over time but lately (for the last few weeks) he has been slipping and there are problems with focus, moods, OCD, and excessive pacing. We have another appointment with our LLMD soon and hopefully he will make some adjustments that will help get him back on track. On a more positive note, he has been having weekly sessions with his former therapist ( an OCD expert whose ideas helped inspire the OCD page of his website), and she has been giving him some practical strategies for dealing with the OCD. Yesterday she helped him diagram the cycle of his OCD (how the negative thoughts lead to the pacing,which provides temporary relief but reinforces and strengthens the OCD) and she helped him see in a visual form how distraction (specifically thinking about and doing things he enjoys) can help him break free of the cycle. I think he got it. It's just a question of whether or not he can follow through with her strategies. I'm hoping that he can do this and eventually get well enough to feel comfortable going back to his website and sharing the new ideas he is learning about how to fight the OCD. For now, I am glad that even though he has taken a step back from the site ( he mostly just checks the statistics once in awhile), he was able to start something that has helped other kids feel that they can talk openly about their disordrer. Our kids should not have to feel that they are alone. I'll try to get back here (hopefully with some improvements to report) to give a more detailed update on Gary some time soon. Ellen

DC Mom, thanks for asking about my son. I will try to post an update some time in the next few weeks. He had a setback over the summer and things were rough for awhile, but we have been seeing some improvements again in focus and mood over the last couple of months. When I have time, I'll post specifics about what I think may be helping. Phasmid, so sorry to hear that your son has the flu. Decisions about vaccinations are alway so difficult, and the problem is that there are risks no matter which way you go. After my son's terrible experience following the Chicken Pox and Hep A Vaccines, we stopped flu shots for everyone in the family and fortunately nobody has contracted it. I do keep oscillococcinum in my medicine cabinet just in case. I have never had to use it, but it is supposed to be helpful with flu symptoms. I hope your son feels better soon. Ellen

Phasmid, I know of someone with PANDAS who had the DTAP in combination with another vaccine (Meningitis) and there was a severe exacerbation of symptoms. My own son had a dramatic worsening of PANDAS symptoms after getting two different vaccines (Chicken Pox and Hep A) a few years ago. Within a few weeks he was having spacing out episodes that would last up to five minutes at a time and there was an explosion of tics, OCD, and symptoms we had never seen before. I have not had much time to post these days, but I do feel an obligation to respond when I see posts regarding PANDAS and vaccines. I would do whatever I could to get an exemption. My son was 11 when he this life altering event happened and since then we have stopped getting vaccines for him forever. I have reached a point where I don't always trust the MD but instead rely on the GUT to guide me in medical decisions for my family. Ellen

Great explanation, thanks. I do get that when these rages happen the kids have limited or no control over them. Are there any specific strategies that you think are helpful in getting kids to stop themselves before they lose control? Do you think that this is possible and if so, what would work for kids who deeply regret the outbursts after the fact but can't find a way to stop themselves from doing this again? Is there anything in particular that has worked for you? Ellen

Thanks for sharing this, Lyme Mom. In what way was Tindamax rough? Did you think it was helpful in any way? We had a consult for my son with Dr. Jones last week, and he began treatment for lyme/Bartonella with a combination of Tindamax (on weekends) and daily Minocycline in addition to his daily Zithromax. It is too early to tell if any of this is helping yet, but I want to have some idea of what to expect. Ellen My kids have been on many different combinations for lyme. My son is currently on augmentin xr once a day, rifampin mon through fri and ciproflaxin. He has been on other combos too like doxy, amoxicillin, mepron, azithromycin, and for a short period of time tindamax (which was really rough). initially he had a picc line for a daily dose of rocephin. My daughter was on some of the above plus bactrim.

Thanks for sharing this, Lyme Mom. In what way was Tindamax rough? Did you think it was helpful in any way? We had a consult for my son with Dr. Jones last week, and he began treatment for lyme/Bartonella with a combination of Tindamax (on weekends) and daily Minocycline in addition to his daily Zithromax. It is too early to tell if any of this is helping yet, but I want to have some idea of what to expect. Ellen My kids have been on many different combinations for lyme. My son is currently on augmentin xr once a day, rifampin mon through fri and ciproflaxin. He has been on other combos too like doxy, amoxicillin, mepron, azithromycin, and for a short period of time tindamax (which was really rough). initially he had a picc line for a daily dose of rocephin. My daughter was on some of the above plus bactrim.

Hi Melinda, I remember meeting you. I hope your daughter is doing well. After my son's 3rd IVIG did not seem to resolve his remaining OCD issues, we saw an LLMD who feels that he does have lyme and Bartonella in addition to PANDAS. He is now on Minocycline (daily) and Tindamex (2 days a week) in addition to Zithromax. I will post an update on him soon (we only started this last week, so it's too early to tell if it's helping), and I will PM you with more specifics. Ellen

I have posted our vaccine story before in past threads, but I want to share this again for those who have not read it. I think the decision about whether and how to vaccinate a child with PANDAS can be very difficult and as a parent you should have the opportunity to make an informed choice. When my son was 11 he had two vaccines (Chicken Pox and Hep A) at a time when his allergies were acting up and his ped said this was no problem. Within a couple of weeks, we saw zoning out periods that would last for up to five minutes, tics, facial grimacing, pacing, hyperactivity, major insomnia, focusing problems and deblitating OCD. In his case the exacerbation after the vaccines got so severe that he could not function in a normal way and there were multiple hospitalizations within the year following the shots. Now after three years (2 rounds of plasmapheresis and 3 IVIGS later), he is about 85-90 percent back to normal, but I do feel vaccines played a huge role in turning his mild case into a severe one, and I feel a responsibility to warn parents who are considering vaccinating a child with PANDAS. Based on our own awful experience, I now believe that children with PANDAS should not be vaccinated unless absolutely necessary. In our own case, the only way I would ever agree to a vaccine again for my son would be in the event that he had a type of injury that would require a tetanus shot. I hope this is helpful. Ellen

Thanks! This is really helpful. I'll keep you posted.

Wendy, I was wondering if you know which antibiotic it was that helped your friend's son with Bartonella. When my son first began to have PANDAS symptoms, he also came out positive for lyme with Igenex and positive for Bartonella (not with Igenex but with another lab). We did treat for both lyme and Bartonella but did not get great results at the time. I'm curious to find out what has worked for Bartonella for others because this is a treatment avenue I may be exploring again some time soon. Ellen