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Ellen

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  1. 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.
  2. 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 woul
  3. 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 wou
  4. 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 s
  5. 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 wh
  6. 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 man
  7. 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. E
  8. 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
  9. 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
  10. 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? A
  11. 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,
  12. 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, bu
  13. 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 hospita
  14. 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 su
  15. 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 trea
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