Guest guest Posted February 17, 2010 Report Share Posted February 17, 2010 Hi, Leanne. OCD is often accompanied by other disorders, like a tic disorder or adhd. My daughter has mild ocd (at this point), with a tic disorder. It is often hard to distinguish where one stops and the other begins. Different medications treat the two, as well as different types of therapy. My daughter takes zoloft for the ocd and tenex for the tics. They have both been very helpful. She has also done therapy for the ocd. You should probably have your pediatrician give you a referral for a psychiatrist, unless he is experienced in dealing with ocd kids. I felt that we didn't get the correct treatment, until we sought a more specialized doctor. Our psychiatrist had several therapists he worked with in his practice, and he then referred us to the therapist, to work on all aspects of the issues. My daughter is not a PANDAS child, so I don't know a lot about that. Obviously, that is not always the case with everyone, but it couldn't hurt to look into it. My daughter has always had issues, even as a young child. She had the clothing issues like you mentioned, as well as separation anxiety. She is also 12 and is only recently started spending the night with friends. We also have a strong family history of anxiety disorders, with both my husband and sister having ocd. Does anyone in your family have similar symptoms? My daughter's ocd began when she was young, maybe around 4 or 5, and she doesn't have contamination issues. But, my sister has severe contamination ocd, and hers seemed to come on fairly suddenly, also around the age of 12. I think that is a common time for these things to show themselves, as there are so many chemical and hormonal changes going on in the body, as well as social anxiety. So, my advice would be to talk openly to your pediatrician about what is going on, regardless of how well you know him. If he is unable or unwilling to help, get in to see a psychiatrist and a therapist as soon as possible. It sounds to me like there is definitely a tic disorder here also, and medication can help lessen that drastically, at least it did for us. Contamination ocd is really hard, as I learned from growing up watching my little sister go through it. She is 36 years old now, and still washes her hands constantly, and has issues with taking hand me downs from my daughter for her kids, or certain stores, etc. just like you mentioned. I think she would be a much healthier person mentally, if she had had the proper therapy as a child, when this first started. My parents tried, and they took her to doctors, but this was the ealry 80's and little was known about ocd, much less the therapies to help it. I've read that the early the therapy can begin, the better the outcome. This kind of came out in a jumble, but hopefully, some of it was helpful to you. You and your son are not alone! All the things you have written sound so familiar to me. It can get better. You just need to get the proper diagnosis, and the proper treatment. Good luck! > > My 12 year old son with " regular OCD " contamination type, also > grimaces or thrusts his jaw when anxiety levels are high like the > end of a school day. I'm reading and getting more confused. Is a > tic associated with PANDAS and not regular OCD, or can it accompany > regular OCD, and if it does is it a seperate disorder? I'm meeting > with a new pediatrician because our physician retired, and I have > no idea what he's like or what he's willing to listen to. I don't > know if I should bring up PANDAS...? My son is not having trouble > with math or handwriting, he's a straight A student right now. Had > clothing tag issues all his life, had terrible seperation anxiety > issues when he was younger, but not now, has occassional bed- > wetting but it always seems to happen when he's played video games > or computer too long and too close to bedtime. Not our imagination > - it's happened many times over several years. As far as sudden > onset...? He had tolerable issues with bugs and things for awhile, > and then before christmas started changing clothes after school, > then showering and changing clothes after school. Mid January it > escalated to where he didn't know anymore what was clean and what > was dirty and he said, " I'm going insane. " That's when the hand > washing started, although he uses avoidance more. Issues with > public places and the things that come from stores started, etc. It > seemed sudden at the time because when it decided to rear it's ugly > head it took off, but not 24 hrs. ??? Help. Information and advice > please, especially regarding the tic. Thanks. Leanne > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2010 Report Share Posted February 17, 2010 Thanks . We are seeing a psychologist who has OCD contamination type herself and is very familiar with CBT/ERT. My sons second appt with her is Friday. He saw a pediatrician for the typical physical and blood work and I mentioned the OCD like behavior but she was leaving it up to the psychologist. I'm switching to her collegue who is at a clinic closer to our home and will meet him next week for the first time. He ordered the zoloft over the phone at an appropriate dose without consulting the psychologist which makes me believe he's treated OCD before, anyway. I may bring up PANDAS just to do the strep test and get it out of the way. Boy that would complicate things to have any of it come back positive, but I'd like to be sure. The PANDAS symptoms sound more like him as a young child. Treating the tic is voluntary, correct? If it doesn't bother the child and doesn't interfere with anything it ok to let it be? He did some eye blinking last year and that went away on its own. This started after school started and I'm betting it will go away this summer. Thanks again for responding. Take care, Leanne > > My 12 year old son with " regular OCD " contamination type, also > grimaces or thrusts his jaw when anxiety levels are high like the > end of a school day. I'm reading and getting more confused. Is a > tic associated with PANDAS and not regular OCD, or can it accompany > regular OCD, and if it does is it a seperate disorder? I'm meeting > with a new pediatrician because our physician retired, and I have > no idea what he's like or what he's willing to listen to. I don't > know if I should bring up PANDAS...? My son is not having trouble > with math or handwriting, he's a straight A student right now. Had > clothing tag issues all his life, had terrible seperation anxiety > issues when he was younger, but not now, has occassional bed- > wetting but it always seems to happen when he's played video games > or computer too long and too close to bedtime. Not our imagination > - it's happened many times over several years. As far as sudden > onset...? He had tolerable issues with bugs and things for awhile, > and then before christmas started changing clothes after school, > then showering and changing clothes after school. Mid January it > escalated to where he didn't know anymore what was clean and what > was dirty and he said, " I'm going insane. " That's when the hand > washing started, although he uses avoidance more. Issues with > public places and the things that come from stores started, etc. It > seemed sudden at the time because when it decided to rear it's ugly > head it took off, but not 24 hrs. ??? Help. Information and advice > please, especially regarding the tic. Thanks. Leanne > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2010 Report Share Posted February 17, 2010 Sudden onset does not mean 24 hours - it can be over a couple of weeks. But it does mean an exacerbation of 18+ points on a y-boc scale. You can ask your psychologist to help you evaluate this. I don't see any reason not to bring up PANDAS, but do be aware that many doctors are not familiar with the clinical diagnosis. You might find it helpful to post at http://www.latitudes.org/forums/index.php?showforum=17 for more information on PANDAS, especially doctors in your area. I'm glad to hear that you have a good ERP therapist, as we found this to be very helpful both during an exacerbation, and especially afterwards. Best - in NC > > > My 12 year old son with " regular OCD " contamination type, also grimaces or thrusts his jaw when anxiety levels are high like the end of a school day. I'm reading and getting more confused. Is a tic associated with PANDAS and not regular OCD, or can it accompany regular OCD, and if it does is it a seperate disorder? I'm meeting with a new pediatrician because our physician retired, and I have no idea what he's like or what he's willing to listen to. I don't know if I should bring up PANDAS...? My son is not having trouble with math or handwriting, he's a straight A student right now. Had clothing tag issues all his life, had terrible seperation anxiety issues when he was younger, but not now, has occassional bed-wetting but it always seems to happen when he's played video games or computer too long and too close to bedtime. Not our imagination - it's happened many times over several years. As far as sudden onset...? He had tolerable issues with bugs and things for awhile, and then before christmas started changing clothes after school, then showering and changing clothes after school. Mid January it escalated to where he didn't know anymore what was clean and what was dirty and he said, " I'm going insane. " That's when the hand washing started, although he uses avoidance more. Issues with public places and the things that come from stores started, etc. It seemed sudden at the time because when it decided to rear it's ugly head it took off, but not 24 hrs. ??? Help. Information and advice please, especially regarding the tic. Thanks. Leanne > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2010 Report Share Posted February 17, 2010 Sudden onset does not mean 24 hours - it can be over a couple of weeks. But it does mean an exacerbation of 18+ points on a y-boc scale. You can ask your psychologist to help you evaluate this. I don't see any reason not to bring up PANDAS, but do be aware that many doctors are not familiar with the clinical diagnosis. You might find it helpful to post at http://www.latitudes.org/forums/index.php?showforum=17 for more information on PANDAS, especially doctors in your area. I'm glad to hear that you have a good ERP therapist, as we found this to be very helpful both during an exacerbation, and especially afterwards. Best - in NC > > > My 12 year old son with " regular OCD " contamination type, also grimaces or thrusts his jaw when anxiety levels are high like the end of a school day. I'm reading and getting more confused. Is a tic associated with PANDAS and not regular OCD, or can it accompany regular OCD, and if it does is it a seperate disorder? I'm meeting with a new pediatrician because our physician retired, and I have no idea what he's like or what he's willing to listen to. I don't know if I should bring up PANDAS...? My son is not having trouble with math or handwriting, he's a straight A student right now. Had clothing tag issues all his life, had terrible seperation anxiety issues when he was younger, but not now, has occassional bed-wetting but it always seems to happen when he's played video games or computer too long and too close to bedtime. Not our imagination - it's happened many times over several years. As far as sudden onset...? He had tolerable issues with bugs and things for awhile, and then before christmas started changing clothes after school, then showering and changing clothes after school. Mid January it escalated to where he didn't know anymore what was clean and what was dirty and he said, " I'm going insane. " That's when the hand washing started, although he uses avoidance more. Issues with public places and the things that come from stores started, etc. It seemed sudden at the time because when it decided to rear it's ugly head it took off, but not 24 hrs. ??? Help. Information and advice please, especially regarding the tic. Thanks. Leanne > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2010 Report Share Posted February 17, 2010 My 13 year old son has ts and OCD. I've replied to you before - the contamination issues you are having sound so similar to ours - my ds completely undresses after school and showers (even takes his glasses off and puts contacts in!). Also won't ride in the same seat in my car for anything else but school. Everything related to school has to stay completely separate from home - I got irritated today when he moved my shoes because they were in the vicinity of his backpack, argh, seems like he picks up new contamination issues with school all the time, homework is pretty much out of the question, (he is starting meds. and therapy). Anyways, he was diagnosed with tourettes at about 7 - has pretty mild, sometimes moderate motor and verbal tics - like eye blinking, grimaces, shoulder shrugging, throat clearing type sounds. I don't believe my ds has pandas. Both me and his dad have undiagnosed OCD, dad has tourettes also. My son has had OC type behaviors since he was quite young, and also tics. Subject: Tic question and more -- confused To: Date: Wednesday, February 17, 2010, 4:41 PM My 12 year old son with " regular OCD " contamination type, also grimaces or thrusts his jaw when anxiety levels are high like the end of a school day. I'm reading and getting more confused. Is a tic associated with PANDAS and not regular OCD, or can it accompany regular OCD, and if it does is it a seperate disorder? I'm meeting with a new pediatrician because our physician retired, and I have no idea what he's like or what he's willing to listen to. I don't know if I should bring up PANDAS...? My son is not having trouble with math or handwriting, he's a straight A student right now. Had clothing tag issues all his life, had terrible seperation anxiety issues when he was younger, but not now, has occassional bed-wetting but it always seems to happen when he's played video games or computer too long and too close to bedtime. Not our imagination - it's happened many times over several years. As far as sudden onset...? He had tolerable issues with bugs and things for awhile, and then before christmas started changing clothes after school, then showering and changing clothes after school. Mid January it escalated to where he didn't know anymore what was clean and what was dirty and he said, " I'm going insane. " That's when the hand washing started, although he uses avoidance more. Issues with public places and the things that come from stores started, etc. It seemed sudden at the time because when it decided to rear it's ugly head it took off, but not 24 hrs. ??? Help. Information and advice please, especially regarding the tic. Thanks. Leanne ------------------------------------ Our list archives feature may be accessed at: http://health.groups.yahoo.com/group// by scrolling down to the archives calendar . Our links may be accessed at http://health.groups.yahoo.com/group//links . Our files may be accessed at http://health.groups.yahoo.com/group//files . Our list advisors are Gail B. , Ed.D.(http://www.ocdawareness.com ), Tamar Chansky, Ph.D.( http://www.worrywisekids.org ), and Dan Geller, M.D. ( http://www.massgeneral.org/doctors/doctor.aspx?ID=18068 ). You may ask a question of any of these mental health professionals by inserting the words " Ask Dr.(insert name) " in the subject line of a post to the list. Our list moderators are Castle, Judy Chabot, BJ Closner, and Barb Nesrallah. Our group and related groups are listed at http://health.groups.yahoo.com/group/ocdsupportgroups/links . IOCDF treatment providers list may be viewed at http://www.ocfoundation.info/treatment-providers-list.php . NLM-NIH Drug Information Portal may be viewed at http://druginfo.nlm.nih.gov/drugportal/drugportal.jsp?APPLICATION_NAME=drugporta\ l . IOCDF recommended reading list may be accessed at http://www.ocfoundation.org/Books.aspx . IOCDF glossary of terms may be accessed at http://www.ocfoundation.org/glossary.aspx . IOCDF membership link may be accessed at http://www.ocfoundation.net/membership/ . Drugs.com pill identification wizard may be accessed at http://www.drugs.com/imprints.php . Mayo Clinic Drug and Herb Index may be accessed at http://www.mayoclinic.com/health/drug-information/DrugHerbIndex .Yahoo! Groups Links Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2010 Report Share Posted February 17, 2010 Hi, Leanne. I sure don't mean to add to your concerns, but thought you might want to talk to the therapist/doctor about this. . .The shoulder shrugging, face grimacing, and eye blinking can be signs of Tourettes. I've read that it is not uncommon for OCD and Tourettes to go hand in hand. But, those with OCD can also have tics. Sometimes due to the OCD, sometimes due the medication for OCD. In all cases, stress can make the tics worse. Sometimes with tics, they are unaware that they are even doing it, although I've read with Tourettes they can feel it coming on. Someone in here, whose son has Tourettes, once said that criteria used to determine if it is Tourettes vs tics is that they have to have uninterrupted tics for a year (I think that was the time frame. . .Hope I'm remembering right) for it to be considered Tourettes. I found that interesting because our son was diagnosed with Tourettes, but think they may have been wrong since his tics come and go and have never lasted, uninterrupted, for a year at a time. Just wanted to share this with you so you can talk to the therapist/doctor about it, who would be the best one to sort it out. He has a lot going on, but so did our son. At times we both were overwhelmed by it all. It's rough. But, you are on the right track with searching for answers and the right treatment. It will get better. Concerning the bed wetting, do you think the games might get him overstimulated and possibly contribute to the problem? Just curious. I know that when I've played them with our son they make me feel hyper and usually give me a headache. Josh has said they usually relax him. I suspect because he is able to get lost in them and turn things off in his head. But, they make me feel like I've drank a pot of coffee. lol BJ > > > My 12 year old son with " regular OCD " contamination type, also grimaces or thrusts his jaw when anxiety levels are high like the end of a school day. I'm reading and getting more confused. Is a tic associated with PANDAS and not regular OCD, or can it accompany regular OCD, and if it does is it a seperate disorder? I'm meeting with a new pediatrician because our physician retired, and I have no idea what he's like or what he's willing to listen to. I don't know if I should bring up PANDAS...? My son is not having trouble with math or handwriting, he's a straight A student right now. Had clothing tag issues all his life, had terrible seperation anxiety issues when he was younger, but not now, has occassional bed-wetting but it always seems to happen when he's played video games or computer too long and too close to bedtime. Not our imagination - it's happened many times over several years. As far as sudden onset...? He had tolerable issues with bugs and things for awhile, and then before christmas started changing clothes after school, then showering and changing clothes after school. Mid January it escalated to where he didn't know anymore what was clean and what was dirty and he said, " I'm going insane. " That's when the hand washing started, although he uses avoidance more. Issues with public places and the things that come from stores started, etc. It seemed sudden at the time because when it decided to rear it's ugly head it took off, but not 24 hrs. ??? Help. Information and advice please, especially regarding the tic. Thanks. Leanne > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2010 Report Share Posted February 17, 2010 Hi, Leanne. I sure don't mean to add to your concerns, but thought you might want to talk to the therapist/doctor about this. . .The shoulder shrugging, face grimacing, and eye blinking can be signs of Tourettes. I've read that it is not uncommon for OCD and Tourettes to go hand in hand. But, those with OCD can also have tics. Sometimes due to the OCD, sometimes due the medication for OCD. In all cases, stress can make the tics worse. Sometimes with tics, they are unaware that they are even doing it, although I've read with Tourettes they can feel it coming on. Someone in here, whose son has Tourettes, once said that criteria used to determine if it is Tourettes vs tics is that they have to have uninterrupted tics for a year (I think that was the time frame. . .Hope I'm remembering right) for it to be considered Tourettes. I found that interesting because our son was diagnosed with Tourettes, but think they may have been wrong since his tics come and go and have never lasted, uninterrupted, for a year at a time. Just wanted to share this with you so you can talk to the therapist/doctor about it, who would be the best one to sort it out. He has a lot going on, but so did our son. At times we both were overwhelmed by it all. It's rough. But, you are on the right track with searching for answers and the right treatment. It will get better. Concerning the bed wetting, do you think the games might get him overstimulated and possibly contribute to the problem? Just curious. I know that when I've played them with our son they make me feel hyper and usually give me a headache. Josh has said they usually relax him. I suspect because he is able to get lost in them and turn things off in his head. But, they make me feel like I've drank a pot of coffee. lol BJ > > > My 12 year old son with " regular OCD " contamination type, also grimaces or thrusts his jaw when anxiety levels are high like the end of a school day. I'm reading and getting more confused. Is a tic associated with PANDAS and not regular OCD, or can it accompany regular OCD, and if it does is it a seperate disorder? I'm meeting with a new pediatrician because our physician retired, and I have no idea what he's like or what he's willing to listen to. I don't know if I should bring up PANDAS...? My son is not having trouble with math or handwriting, he's a straight A student right now. Had clothing tag issues all his life, had terrible seperation anxiety issues when he was younger, but not now, has occassional bed-wetting but it always seems to happen when he's played video games or computer too long and too close to bedtime. Not our imagination - it's happened many times over several years. As far as sudden onset...? He had tolerable issues with bugs and things for awhile, and then before christmas started changing clothes after school, then showering and changing clothes after school. Mid January it escalated to where he didn't know anymore what was clean and what was dirty and he said, " I'm going insane. " That's when the hand washing started, although he uses avoidance more. Issues with public places and the things that come from stores started, etc. It seemed sudden at the time because when it decided to rear it's ugly head it took off, but not 24 hrs. ??? Help. Information and advice please, especially regarding the tic. Thanks. Leanne > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2010 Report Share Posted February 18, 2010 For what its worth, not sure if someone mentioned it yet, but bed wetting or changes in urinary frequency are also symptoms of PANDAS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2010 Report Share Posted February 18, 2010 For what its worth, not sure if someone mentioned it yet, but bed wetting or changes in urinary frequency are also symptoms of PANDAS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2010 Report Share Posted February 18, 2010 I would have your son tested by your pediatrician for the following: rapid strep test strep culture (preferably 48-72 hours but each doc/lab is different - push for the longest culture you can get) ASO AND Anti-D Nase B strep titer blood tests These don't prove or disprove PANDAS, but they are part of the evidence gathering. If they indicate a current or recent infection, even if your son was asymptomatic, then it gives more credence to a possible PANDAS diagnosis. It also helps you feel like you're doing everything possible as you all suffer through this OCD episode. If any of the strep tests are positive, push for antibiotics and see if you can see any improvements. Remind the doctor that strep can be lots of places besides the tonsils. If lab work indicates strep, antibiotics should be given regardless of PANDAS vs. regular OCD. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2010 Report Share Posted February 18, 2010 I would have your son tested by your pediatrician for the following: rapid strep test strep culture (preferably 48-72 hours but each doc/lab is different - push for the longest culture you can get) ASO AND Anti-D Nase B strep titer blood tests These don't prove or disprove PANDAS, but they are part of the evidence gathering. If they indicate a current or recent infection, even if your son was asymptomatic, then it gives more credence to a possible PANDAS diagnosis. It also helps you feel like you're doing everything possible as you all suffer through this OCD episode. If any of the strep tests are positive, push for antibiotics and see if you can see any improvements. Remind the doctor that strep can be lots of places besides the tonsils. If lab work indicates strep, antibiotics should be given regardless of PANDAS vs. regular OCD. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2010 Report Share Posted February 18, 2010 I agree it is all confusing when it comes to these overlapping symptoms plus Dr's don't seem to want to diagnose or treat PANDAS. My son had strep and high fevers at 12 months and chorea and overnight tics. It was then documented on his next infection with fevers that the symptoms returned. They lasted about eight weeks then went away. However, even though the neuro suspected PANDAS he wouldn't do anyhing but give antibiotics for the infections. This pattern continued for years. So now seven years later his symptoms stick around and include tics that change and come and go, mood liability on a daily basis, and obsessions that are more like compulsions over his interests. Is it Aspergers? Probably not I'm told because he is too social and has good conversation skills. However he has the motor delays and meltdowns and fixed interests plus overreacts to people especially us at home. He spends so much time on researching his interests. He throws fits over getting things he wants. The school thinks I am blowing this out of proportion too. He is good there but has attention issues. But he falls apart at home. Maybe it is Tourttes? His tics are vocal sounds and innappropriate words and motor tics like eye rolls. We have had the urinary frequency issues and the encopresis bowel withholding that leaks. I think we have every classic PANDAS symptom but geting Dr's to recognize this and do anything about it is almost impossible. We have resorted to medications because we couldn't live as a family without them. He just overreacts and throws fits and has trouble going along wih things and people wihout them. He is on prozac for the anxiety and obsessions, tenex for the tics, and risperdal for the tantrums. It is still not perfect but much better then previously. He has had positive/elevated strep titers and had the Cunningham CAM Kinase tests in the lower positive range. It seems to me that the longer the PANDAS goes on the worse they become and less it goes away. We have tried steroids but they made him really anxious and mean (eventually he seemed better on them after a month and we stopped them)and antibiotics at a daily 300 mg of Omnicef doses. I sometimes wonder if the larger antibiotic doses like the 3000 a day dose would wipe this out for him. Plus PEX or IVIG is an option if you can find a Dr. to do it. Psycologist seem to struggle with what to do for treatment as do the psychiatrist and neurologist. There is a few good Dr's who treat it and they don't usually live nearby or take insurance. Dr. K , Dr. T and Dr. B seem to be the top ones currently who are willing to help. I can get you their numbers if you'd like. You will have to pay out of pocket to use them though.Dr. T seems really helpful if you'd like to talk to him. He is really compassionate. We have traveled to see some of the other specialists who research PANDAS and they did not give us much help in he way of getting him better. > > For what its worth, not sure if someone mentioned it yet, but bed wetting or > changes in urinary frequency are also symptoms of PANDAS. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2010 Report Share Posted February 18, 2010 I agree it is all confusing when it comes to these overlapping symptoms plus Dr's don't seem to want to diagnose or treat PANDAS. My son had strep and high fevers at 12 months and chorea and overnight tics. It was then documented on his next infection with fevers that the symptoms returned. They lasted about eight weeks then went away. However, even though the neuro suspected PANDAS he wouldn't do anyhing but give antibiotics for the infections. This pattern continued for years. So now seven years later his symptoms stick around and include tics that change and come and go, mood liability on a daily basis, and obsessions that are more like compulsions over his interests. Is it Aspergers? Probably not I'm told because he is too social and has good conversation skills. However he has the motor delays and meltdowns and fixed interests plus overreacts to people especially us at home. He spends so much time on researching his interests. He throws fits over getting things he wants. The school thinks I am blowing this out of proportion too. He is good there but has attention issues. But he falls apart at home. Maybe it is Tourttes? His tics are vocal sounds and innappropriate words and motor tics like eye rolls. We have had the urinary frequency issues and the encopresis bowel withholding that leaks. I think we have every classic PANDAS symptom but geting Dr's to recognize this and do anything about it is almost impossible. We have resorted to medications because we couldn't live as a family without them. He just overreacts and throws fits and has trouble going along wih things and people wihout them. He is on prozac for the anxiety and obsessions, tenex for the tics, and risperdal for the tantrums. It is still not perfect but much better then previously. He has had positive/elevated strep titers and had the Cunningham CAM Kinase tests in the lower positive range. It seems to me that the longer the PANDAS goes on the worse they become and less it goes away. We have tried steroids but they made him really anxious and mean (eventually he seemed better on them after a month and we stopped them)and antibiotics at a daily 300 mg of Omnicef doses. I sometimes wonder if the larger antibiotic doses like the 3000 a day dose would wipe this out for him. Plus PEX or IVIG is an option if you can find a Dr. to do it. Psycologist seem to struggle with what to do for treatment as do the psychiatrist and neurologist. There is a few good Dr's who treat it and they don't usually live nearby or take insurance. Dr. K , Dr. T and Dr. B seem to be the top ones currently who are willing to help. I can get you their numbers if you'd like. You will have to pay out of pocket to use them though.Dr. T seems really helpful if you'd like to talk to him. He is really compassionate. We have traveled to see some of the other specialists who research PANDAS and they did not give us much help in he way of getting him better. > > For what its worth, not sure if someone mentioned it yet, but bed wetting or > changes in urinary frequency are also symptoms of PANDAS. > > > > > > Quote Link to comment Share on other sites More sharing options...
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