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Wendy, I have talked to the nurse at the office, that is how I got in touch with Gail. I will be calling tommorrow to schedule appointment for my son as well as one with Dr. Latimer, just in case the device doesn't work for my son. Linda

Wendy, Forgot to add that Gail will be going on vacation next Wednesday, so email her asap, then she will call you. Remember you're both in the same town. Linda

MyRose I'm so sorry your child is having to go through this all over again. On a much brighter note, I spoke with a lady who lives in Orlando who took her child to see Dr. Sims. You must talk to her. Her name is Gail, she asked me not to give out her phone number, but you can email her and then she will call you. Her email is: TGLINCOLN@aol.com She was very nice and gave me alot of detail. Please email her, I think she may have answers for you and others. Good Luck, Linda

To All, I spoke with one of the moms of a 11 yr old who was helped by Dr. Sims. Her email address is: TGLINCOLN@AOL.COM. I asked her if I could post her email on here and she said yes. She said she would be willing to talk or email anyone that would like information on this device. She said she will do anything to help others with tics. Her name is Gail and she was very friendly, and offered lots of information. One thing, they will be going on vacation this coming week, so if anyone would like to speak with her or email her, you might want to do this asap. Linda

Michelle, Dr. Latimer will be back in the office on the 20th, so your appt. is probably still on. Good luck, and please keep us posted on how things go for you. Linda

Thanks Dalit, I thought about asking for "references" at Dr. Sims' office, so I'll call tomorrow. Linda

Good to hear Dalit, Can I ask if this information was from ryansmom from the othe mommy website? Did this mom that you spoke with, did she say what type of tics her child has/had, ie, motor or vocal tics? We too, were already planning a vacation to DC, so we figured, why not stop and see Dr. Sims. Keep us posted. Linda

newtotics, I agree with mylittleangle, we would do anything to help our kids, no matter what the costs. I don't think anyone was saying that the price was outrageous, just verbalizing. I don't think we were skeptical, but if some were, do you blame us after trying so many other things to help our kids? If someone like you would share their experience with Dr. Sims, it would help all of us better understand how the device actually works. For example, does it only work for people who only have motor tics in the facial area, or does it help with all tics, both vocal and or motor. We are simply verbalizing our concerns, not being critical of something we don't know more facts about. Linda

Kathy, I agree with the probiotics, just make sure you don't give at the same time as the antibiotics. As for the enviromental toxins; We moved from Florida to Texas 2 yrs ago, and I asked our new peds dr. how long it takes for people to adjust to the new enviroment after you move-she said it normally takes people about 1 year for your body to adjust to the new environment. Linda

Just fyi for any new people on here. The website that Diana Pohlman created is up and running. We owe her much gratitude and vacation time! pandasnetwork.org

Char, I called Dr. Sims office and was told that at your first visit which costs $312, they actually will determine if the device would work for you, and if you decide at that point to continue then you would order the device made especially for you, which takes about 1 week. If at the first visit you decide the device doesn't really work to your satisfaction and is not for you then, your expense is only the initial $312. Total cost is $5,057. She also said Dr. Sims could do the x-ray or your dentist could do it. I actually took the papers to my dentist this afternoon to see what he thought of the device and Dr. Sims' theory as to why this would work. I am waiting to hear back from him. Linda

Char, I called Dr. Sims office and was told that at your first visit which costs $312, they actually will determine if the device would work for you, and if you decide at that point to continue then you would order the device made especially for you, which takes about 1 week. If at the first visit you decide the device doesn't really work to your satisfaction and is not for you then, your expense is only the initial $312. Total cost is $5,057. She also said Dr. Sims could do the x-ray or your dentist could do it. I actually took the papers to my dentist this afternoon to see what he thought of the device and Dr. Sims' theory as to why this would work. I am waiting to hear back from him. Linda

Caryn, Can you tell me what the mg's or doses of these supplements are? I have a son who is 9 yrs old and still haven't found the right combination of supplements. Linda

Gemi, I'm curious how your appointment with Dr. Sims went? Please post as soon as possible, I'm sure I speak for several people here, that we are all waiting to hear good news! Linda

Familyof4 and peglem, Yes, the $200 is to cover the cost of the shipping. Everyone else who asked for the study was charged the same. Sorry no one else mentioned this on the posts. Linda

Kim, Dr. K told me that they know that Hep B can cause some Panda sysmptoms. My son's tics started after receiving the Hep A and the varicella shots, about 2 weeks after. Linda

Hi Pat, I'm so glad to hear that Gaby is doing so well! Question about the kefir- I found a Helios brand kefir with FOS in different flavors at Whole Foods. The bottle says it has 7 probiotic kefir cultures and it is 2% reduced fat milk with vit. A & D. Is this the right type of kefir? It smells horrible, (sour) but my son seems to like it. What do you think? Linda

Melanie, Just fyi: What is the Role of Aspirin? Epidemiological research has shown an association between the development of Reye's Syndrome and the use of aspirin (a salicylate compound) for treating the symptoms of influenza-like illnesses, chicken pox, colds, etc. The U.S. Surgeon General, the Food and Drug Administration, the Centers for Disease Control and Prevention, and the American Academy of Pediatrics recommend that aspirin and combination products containing aspirin not be given to children under 19 years of age during episodes of fever-causing illnesses. Acetylsalicylate is another word for aspirin; some medicine labels may use the words acetylsalicylate, acetylsalicylic acid, salicylic acid, or salicylate instead of the word aspirin. Always ask your doctor or pharmacist before taking any medication. Steroids are simply used to suppress the current symptoms. Linda

About 1 week after my son received this vaccine and the Hep A is when his tics started.

Hi Myrose, We did the steroid burst, but only after talking to Dr. Lekman at Yale, who is a Tourrets expert and he assured me that the steroid burst would not make the tics worse, if it was not Pandas and possibly Tourettes. I was reluctant at first, but went ahead with it and it did not increase the tics. After the second week his teacher emailed me and told me that his tics had actually DECREASED. Linda

My son who is 9 (will be 10 in late July) had a steriod burst last month and we are doing IVIG this coming week. Tics are his biggest problem. The steroid burst - we saw results on the second day, but not with the tics. On the second week after steroid burst, his home room teacher emailed me regarding the decrease in his tics at school, we also noticed it at home. Linda Hi Linda - Is your son having the IVIG done with Dr. K? Tics are my son's biggest problem as well. I've read some information that plasmapheresis is better when tics are the chief issue, and IVIG is better if it's OCD as the major issue. Have you read anything about this? Kim Kim, We are indeed going to Chicago to see Dr. K. I have not read that plasmapheresis is better for the tics than IVIG. We also did testing with Dr. Cunningham in Oklahoma and this certainly identified Pandas. IVIG is scheduled for this coming Friday and Saturday. Linda

OMG! My son just recently started to do this as well! I have to constantly tell him to swallow his spit. Lindal

My son who is 9 (will be 10 in late July) had a steriod burst last month and we are doing IVIG this coming week. Tics are his biggest problem. The steroid burst - we saw results on the second day, but not with the tics. On the second week after steroid burst, his home room teacher emailed me regarding the decrease in his tics at school, we also noticed it at home. Linda

Kathy, I understand your worries about the steroid burst possibly making the tics worse. I too was worried about it, but I took a leap of faith, and my son's tics actually got better with the burst. We didn't notice it at first, then a few days later we noticed the tics didn't go away, but got ALOT better. I've heard the tics are hardest to get rid of. We also noticed improvements in other areas, like drawing, his attitude as well. Linda

Madhu, I live in the Dallas area, and I too have a 9 year old with Pandas. I sent you a personal message with my info. I can refer you to at least 1 doctor who prescribes the zithromax for my son after speaking with Dr. K in Chicago. Linda