lss

Hi Dominique, Where in Texas and what Doctor did you see? I too had my son's tonsils and adnoids removed and he was fine for about 1 week after then the tics started again, went away and recently came back after going to school and possibly being exposed to bacterial or viral infection. Thanks, Ls

I sure hope it's just that - the"turning back the pages" - I am really curious how that actually works or why it does. I mean - what could bring back behaviors or even actual conversations that she had a year ago? I'd like to know the physiological rationale. I will be e-mailing Dr. K tommorrow since it will be time for our weekly update which he requests after the procedure. I think I mentioned that she slept really well for a few nights, then had a horrible couple of hours of nightmares & night terrors the night before last. Last night was great again. It's hard to not know what to expect from day to day or sometimes from hour to hour - things change so unpredictably. Thanks again for all the support. Pat Hi Pat, We spoke on the phone yesterday, and you were very informative. Hang in there, I'm sure things will get better. My prayers are with you. Linda

Sarah, I am thinking of doing IVIG for my son. You say your son 3 IVIG, where was this done, was it with Dr. K in Chicago or is there another doctor who is doing this as well? Thanks, Linda

Buster, New to the forum, and have noticed you have lots of info, which I too have found. Has your child had IVIG and what is your opinion on IVIG risk and possible side effects? Linda Hi Myrose, I think the main item would be what's the relationship you have with the folks you are sending the email to. If they think they've got your child's situation under control, then they're going to be really hesitant to change anything -- even antibiotics. So if you're not in the middle of an exacerbation, it's going to be really hard (in my opinion) to sway a doctor without at least a really great track history associating prior exacerbations with positive strep cultures. If they don't see such a relationship, they aren't going to act. 1. Are you seeing current exacerbations? If not, then even if it were PANDAS it is highly unlikely you'd find any evidence of strep if the last exacerbation was > 8 weeks ago. Depending on when was the last exacerbation, all residuals of strep can be gone. If you are in an exacerbation, was a throat culture done ? 2. Are you thinking of propholaxis antibiotics? This is going to be tough to get without some evidence that your child's symptoms are temporally linked with a streptococcal infection. We gratefully had a positive strep culture in the middle of a really bad exacerbation which allowed us to treat with antibiotics and see the improvement. From your previous posts, it sounded like your child was doing well at the moment. Is there something that is motivating you to want to change medication? Is it mostly a concern about a followup exacerbation? I know none of us want to go through another round, but it's really tough to get propholaxis antibiotics without some evidence. If you have a followup exacerbation, then I most certainly would recommend a throat culture. That should be enough evidence to get antibiotics. At that point you can debate which one and do all the followup. I know this is a horrible position -- waiting and worrying, but unless you have a great track history with the doctor and they have some evidence, they are really unlikely to put your child on propholaxis. You are more than welcome to cut and paste what I posted into an email. I think all you will be doing is setting up the foundation for a followup conversation if you get another exacerbation. Regards, Buster

Thank you all for the info. I also spoke with PMoreno about her experience with Dr. K. I am just so worried about any possible side effects. I know that IVIG is not without danger or side effects. If anyone else on this forum has seen Dr. K and had IVIG done on their child, please let me know how it went and the outcome. Many thanks again Linda

Dedee, I am thinking of seeing Dr. Murphy, but others on this site have seen Dr. K in Chicago for IVIG. Your child sounds very much like mine. We had our son's tonsils removed in August hoping this would clear up his tics. They went away for a few weeks, and are now back. He too had 3 strep infections within a 7 month period before tonsils were removed, by recommendations by the neurologist. Did Dr. Murphy mention IVIG at all. Would love to hear more info on Dr. Murphy. I know she was very involved with Swedo and Pandas. It would be easier for me to fly to St. Pete from Dallas than to Chicago, but I will go wherever I need to. I also noticed that your son was NOT prescribed Tennex by Dr. Murphy and only antibiotics. I appreciate any help. Again, thanks to all Linda

Thanks P.Mom, Trust me I have done research and then some, but have been unable to find any doctors here in Dallas, of all places. My concern with seeing Dr. Murphy, albeit she was at the forfront of PANDAS research, is that she is a psychiatrist and does prescribe Tennex, this drug is for High Blood pressure in adults and is used for children with ADHD. My son does not have ADHD, he has severe tics. I'm wondering how long the children are put on the Tennex, is this short term and does anyone know if children ever outgrow these symptoms? I'm willing to see Dr. Murphy, but would like a more permenant solution to this than drugs. Are you presently seeing Dr. K in Chicago and if so, do you live in the area, or how often do you have to fly there to see him. Has your child had IVIG with Dr. K and if so, how is your child doing and reacted to the procedure? Again, any information I can get is much appreciated. Linda

Thank you for any information you can provide. We do not have anyone in the family both on my side or my husbands side of the family that has/had tourettes and therefore I do believe that my son has PANDAS. After looking back on his medical history, it all points to PANDAS, all of his symptoms. We moved from Florida (can't believe Dr. Murphy is there and we are not!) to Dallas and you would think that in a big town like Dallas someone would know about PANDAS. His symptoms started in PRE-K when he was 6 with the eye blinking soon after he had sinus/strep infection. Then again his tics, this time vocal tics after vaccinations prior to moving to Texas. Since moving here in July of 07, he had a strep infection in Dec, then another one in March, and then another one in June. Neurologist suggested we remove his tonsils, which we did, and his tics stopped for a short time and are back after a psychiatrist prescribed clonidine(which is for high blood pressure). After 1/2 a pill his tics went thru the roof! The psychiatrist is now asking us to try tennex (not sure of spelling). Today we went to see another doctor who is more open to trying antibiotics, steroids and is willing to call a Dr. K in Chicago to find out more information about IVIG. What does Dr. Murphy think about IVIG? I'm hoping that she is the doctor we have been praying for. Thanks again, Linda

Thanks for the info. Only reason I asked, was that our pediatrician thought it would be worth looking into Dr. K before we flew up to Chicago from Dallas. He said the chances of his methods working would be better if he had been published by a medical journal. However, I know what you mean about the pain and misery that these kids are in. My son has horrible night terrors, which means we wakes up acutally sleep walking having horrible dreams and talking as if he is awake but talks about things happinging to me or people's head expoding, just horrible dreams. Have you experienced this with your child? He only has these when his tics are high, also, have you noticed your child's eyes being dialated? Can you keep me posted as to how your child is doing in the coming weeks after having had the IVIG with Dr. K? Linda

Worried Dad, Can you tell me more about this Dr. K? Do you live in the area or did you have to fly up to Chigaco and if so, how long before having the IVIG did you have to see this Doctor. I have a 9 year old son with PANDAS and am looking for a doctor to help. From all the info that I have researched IVIG looks to be the answer to all our prayers. Please keep me posted on how your son is doing. My prayers are with you. Linda

Hi New to this forum, Wondering about Dr. K. Can you give me any info. Linda

Can anyone give me more info on this Dr. K? Does anyone know if he has been published in any of the medical journals?

Hi, I just joined this forum and have lots of questions. I was wondering if anyone knows if this Dr. K in Chigaco has had any of his research or work on his PANDA patients published in any of the medical journals or is it soley "lay mens" published. Has anyone on this forum seen him and had results doing either the IVIG or PEX? I have had a difficult time trying to find a doctor in Dallas and am to the point of going anywhere I have to for my son. I also have heard of Dr. Murphy in Florida. Has anyone gone to her? Linda

I was wondering where you buy this and is it a vitamin? When you say it helps him, is it helping with the tics? Thanks

Hi, I am new to this forum, but believe my son has PANDAS. My ped doctor first thought it was then decided it might be tourettes. I took him to a neurologist and he said there really was no difference from PANDAS and tourettes. My son has all the signs of PANDAS and as I look back on his medical history when this first started all point to PANDAS. I cannot find a doctor in the Dallas area who knows or will give antibiotics for it. I too found Dr. TK Murphy in Florida thru the internet and am wondering if you have talked with her or if you have seen her. I did speak with someone at Duke University who is willing to see our son and said that the treat children with PANDAS, but we would have to wait until summer time to have the time to stay there for 2 weeks. We also took our son to see a psychiatrist who put him on Clonidine and after the first dose, his vocal tics got worse and it brought on motor tics as well. She is changing the RX to Tenex, has anyone heard of this? Both these meds are suppose to help with the tics, but are used for adults for high blood pressure. I too am ready to fly to Florida or to North Caroline to see the Drs. One other thing, does anyone know if the doctor in Chigaco, "Dr. K" ever been published in the medical journals. I was told that unless his theories or treatments have been medically published and not just "lay mens published" I should find out more info about his treatments. Thank you all for any info. lss [/le