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The numbers you should be looking at are: Lysoganglioside:640 Tubulin:500 Dopamine 1: 1000 Dopamine 2: 2000 In other words, the 2 hour figures is what you need to read. Did they give you the level of CamKinase? Linda

Alot of others on the Tourettes panel here have also posted that their children's tics get worse after swimming, and they attribute it to the chlorine in the pools, my son included, but now I'm wondering if it could be because of things such as cryptosporidium or other contaminates in the pool water. My son like alot of others here react to bacterial as well as viral infections, so you never know. Over the summer we were at a few water parks, one being Six Flags water park and after the first day my son's tics and behavior were horrible! Prior to that trip, our neighbors had taken him to a local water park, and his tics were fine, so I honestly don't think its the chlorine. http://truehealthistruewealth.blogspot.com...n-catch-in.html Linda

KG I don't think tourettes would go away for that long of a period, but you may want to ask Dr. Jim Leckman at Yale, he will respond if you email him James.Leckman@yale.edu Since you are in Ct. I would call Dr. Latimer in DC and have a phone consult with her. I know of another parent here who drove to see her from Ct. and had Plasmapheresis done at Georgetown. Linda

Alot of others on the Tourettes panel here have also posted that their children's tics get worse after swimming, and they attribute it to the chlorine in the pools, my son included, but now I'm wondering if it could be because of things such as cryptosporidium or other contaminates in the pool water. My son like alot of others here react to bacterial as well as viral infections, so you never know. http://truehealthistruewealth.blogspot.com...n-catch-in.html Linda

Robin We saw Dr. Mazade at Cooks and his response was that our son's symptoms were not the same as his previous "other 2 Pandas patients", so therefore he did not have Pandas. I had test results from Dr. Cunningham, he didn't read them, just looked at the papers for about a split second, then he said sorry, can't help you, We also saw a neurologist at Cooks, Dr. Acosta, who said there was no such thing as Pandas, your son has tourettes. He refused to look at the papers, said they meant nothing to him. He aslo said he wanted something from a credible university, I guess OU is not credible enough for him. We had already don the prednisone with Dr. K at the time, and my son did respond. So along with Dr. Cunninghams test results and the fact that he had responded to the prednisone, we knew our son has Pandas. Dr. Cunningham had originally suggested we use Dr.Istre in Dallas, but when we talked with him, he saw only patients that were already in the hospital, and he told us that any doctor at Cooks or Southwest UT would be fine. I guess not. We have since gone to Chicago and had IVIG with Dr K, we also saw Dr. Latimer at Georgetown, both agreed that my son has Pandas, we will be doing the PEX with Dr. Latimer in a few weeks. I'm glad you had luck with Dr. Mazade, but he needs to look and think outside of the box and know that all of these kids do not present with the exact same symptoms. Dr. Acosta, the neuro at Cooks was quick to rx drugs, but would not even consider Pandas. However, when I mentioned a possible study from Dr. Leckman at Yale and Latimer at Georgetown, then he said he might be interested in placing some of his "tourettes" patients in the study. Yeah right! I have been fortunate enough to have found a local Pediatrician who did talk with Dr. K and is willing to prescribe the zithromax on a monthly basis for my son. She was honest enough to say "I really don't understand Pandas, but I'm willing to learn". Linda

Strep/Tourettes I believe if you contact Dr. Leckman at Yale he will tell you that there are people who are beleived to have tourettes, actually started out with strep/Pandas. Linda

Michelle, I noticed you say you traveled 12 hours to see Dr. Latimer. What state are you in if you don't mind me asking? I too agree that your child is very lucky to have you. Linda

Michael, We did IVIG back in the end of May and I can tell you that with our son who is now 10 and has vocal tics mostly with some motor tics, well the tics did go away for about 3 weeks, then we saw new tics we had never heard before. Dr. K said this would happen, but I'm not sure. Some of the other symptoms also got better, but the separation anxiety has not gotten better. Because of the vocal tics, we are considering home schooling him. It was difficult last year, and his teachers and the rest of the kids were really great with him, but this year the tics are actually worse and I don't think its fair for the other kids. We are currently looking into Plasma exchange with Dr. Latimer. We see her tomorrow. Linda

Abbe, The musle testing that your doctor did on your son, was this like a NAET doctor does? Linda

Carolyn and Faith, Thank you for the info. I'll try both of your suggestions. Linda

Carolyn, How would I find out what enzymes my son would need and how do I find a "good" naturopath? Also, my son has mostly vocal tics, no motor tics, would the enzymes help for the vocals? Linda

Mylittleangel, I have had alignments done on me and my older son when he was much younger and it does not hurt. Our chiropractor in Fl had 3 kids and he would manipulate them as well, he beleived it kept them much healthier. Once your child gets accustomed to it, he could actually enjoy having work done on him. I suffered from severe migranes and he really helped me with them. If you are lucky and find a very good chiropractor, he will explain how the mis-alignment of certain parts of our bodies affect the nerves as well and your organs. I can't say anything about the possibility of causing or reduction of tics. Good luck Linda

Abbe, What type of medical doctor was this? Was it a Allergy and Immunology dr? Linda

FYI- I found this http://renewalenterprises.com/paracidin.html

Wendy, The movements that you said your daughter was doing, did it look like she was playing a piano with her hands? If so, this is another symptom of Pandas, chorea like movements. Zithromax is the name brand and the pills are usually pink/redish, the generic are white and go by the name azithromycin. Sometimes the generic are better for the kids, because they don't have the dye. Good luck in NY. Linda

Mary, Are you talking about Keppra? If so, yes we did the name brand and the reason we stopped it was that he was having hallucinations at night and was getting angry, and the doctor said if that happened, we should stop. Our son only has the vocals, not the motor tics and I'm wondering if because these drugs are anti-seizure drugs that they may not work for the vocals? I just don't know about these drugs and what they are doing to our kids, but I need to get him some relief. Linda

Topamax- Does anyone know if this works for vocal tics? My son who is 10 tried Keppra, but did not help with the vocals. He has no motor tics, just vocals. Linda

Wendy, If I were you and while you are in NY, if your child gets worse, take her to a walk-in clinic and tell them you think she might have strep again, and ask that they give you the azith. I really think your child's symptoms are more Pandas. Also, you should give her a probiotic, but not along with the antibiotic. Enjoy NY! Linda

Carolyn, Question about the vitamins you are giving your son. I'm trying to make sure I understand this, that in addition to giving him Bonnie's vitamins (which can be about 18-20 a day) you are giving him the additonal, glycine, c, NAC and L-carnitine? I just want to make sure I get this correct? Thanks for your help. Linda

Wendy, As for the titers, not necessarily true. Some Panda kids do not have elevated titers, and as you said, your child did not have the typical strep symptoms, some don't. Do email dr. cunningham, and do the test (I don't remember exactly what the cost was, I think it was $200) It will show the levels of CamKinase elevated if she has Pandas. But as I said, the drs over at Creations Own can also test her, not sure if its the same test, but since they are closer to you and they are doctors who see patients, Dr. C is a research dr. The strep doesn't always have to be in the throat. As for the handwriting, again not all kids have this, every child appears to have alot of similar symptoms and yet alot of different ones as well. Good Luck Linda

Wendy, It's not just the tics that you should be concerned with, but the onset of your child confessing, urination problems, and the fact that she was complaining about her ear hurting. Did the doctor do a 72 hr. culture to make sure there was no strep? If after the few days of zith, the symptoms re-appear, I would take her in and get another culture (72hrs) and ask for a upper respiratory culture. As Colleen mentioned, the fact that she responded so well to the zith, sounds more like Pandas than TS. Try the doctors at Creations Own in Melbourne, they do alternative meds as well as regular, so they may provide you the zithromax and they will do phone consults if you don't want to drive to Melbourne. Dr. Murphy did move, but she is still in Florida her number is 727-767-8230 or 8291. You can also look up Creations Own on-line. As for the tics, yes sometimes with Pandas kids, the tics do subside after strep and come back again with re-infection or when they are exposed to other bacterial or viral infections. But there are kids with Pandas, whose tics don't stop even with zithromax. Hope this helps a little. Linda

Mary and Others, I see alot of post where parents are using topamax. I am at a point with my son that I feel we need to try something other than supplements. Can anyone tell me what your children have experienced as far as side effects. We have seen 2 neurologist and both wanted to start with Haloparidol, or Haldol. We tried Keppra for 3 days and he was having hallucinations, so we stopped using it. Thanks for your help. Linda

I know how you feel. I feel exactly the same way for my son. I did mention this to a neurologist that we had seen, and he smirked of course and then said, it might work for those people with motor tics. This is why I wanted to speak to moms of others who had already had the device. When I spoke with Gail in Florida, who I believe is on one of the videos, she did say that her son mostly had motor tics, with some clearing of the throat things. The device is working great for him, but again, the tics were motor. She also said he complained after a few months because a tooth had come out and the device needed adjusting, but that once that was done, he stopped complaining that it was hurting him. Did Dr. Sims say that after wearing the device a few more weeks, or months, that the tics would decrease? Linda

So sorry to hear this. Can you tell me if your son's tics are motor or vocal or both. I know we were all hoping to hear better news as I'm sure you were. Linda

Wendy, Sorry to hear about your daughter. The confessing and the urination are symptoms of Pandas as well as the tics. Since you are in Florida, why don't you see Dr. Murphy. She understands Pandas. As for a test, there actually is a test to see if its possibly Pandas. In Florida, not far from you is Creations Own in Melbourne. They actually do have a test for Pandas. There is another Dr. in OK who does a blood serum test, but other doctors won't really acknowledge this, since they say its only research. I beleive Dr. Murphy is in Tampa. Also, check out this website: pandasnetwork.org Linda