acdrobert

[Wow I gues we are one of the few kids with tics but no OCD quote name=Buster' date='Sep 2 2009, 12:58 AM' post='37052] I re-read Swedo's paper "Therapeutic plasma exchange and intravenous immunoglobulin for obsessive-compulsive disorder and tic disorders in childhood" and noted that in the study of 29 children, only 2 had tic disorders without OCD http://intramural.nimh.nih.gov/pdn/pubs/pub-5.pdf I then re-read Kurlan's June 2008 Pediatrics paper and discovered that >75% of his kids had been diagnosed with Tourettes, 10% with some chronic tic disorder, 10% with tics not otherwise specified (i.e., 95% of Kurlan's kids had primarily tics). Essentially Swedo was studying OCD and Kurlan is studying Tourettes. Looking at the definitions of OCD and Tourettes Syndrome, TS has a restriction that there is no remission lasting longer than 2 months within a year. This got me wondering whether the reason that the John Hopkins researchers seem to be consistently unable to reproduce Swedo, Kirvan, Dale and Church's results is because they are checking whether PANDAS is a subset of Tourettes rather than whether PANDAS is a subset of OCD. I found out that Singer has just published yet another paper that states that it is comparing non-PANDAS OCD, OCD + chronic tics and OCD + PANDAS . However, looking at his statistics, there are no OCD-only children in the OCD+PANDAS group. In addition, it appears that the OCD+PANDAS group was pulled from kids diagnosed with Tourettes. Thus the group should have been labelled OCD+TS+proportedPANDAS. What I'm getting at is that Kurlan is studying whether PANDAS is a subset of Tourettes rather than whether PANDAS is a subset of OCD. He's using the Tourettes as primary and OCD as secondary rather than having studies of OCD as primary and tics as secondary. So for folks on this forum, were your kids diagnosed with Tourettes or with OCD? Best regards, Buster

Physicians affiliated with Brown University have developed a blood test that searches for susceptibility to post-strep rheumatic fever. It is expected that the test will also pin-point children who are genetically predisposed to developing the repeated behaviors, movements, and vocalizations associated with strep-related PANDAS I copied this from the School Nurse Article. This is the first I have heard of this study. Has anyone done this ? My child is adopted so being able to determine if he is genetically predisposed to PANDAS may hel my Ped and Neuro Peds to actually believe in PANDAS.

Hello all - For as long as I live I don't think I will ever understand the ups and downs of this disease. The last week I have been stressing because Monday is the start of school and Thomas has been ticcing to beat the band. I kind of thought that he might be getting a virus just because several of the neighborhood kids had the cold thing going on. The virus finally produced other symptoms such as a sinus headache yesterday. I have given him 2 doses of Motrin for the headache plus a nasal decongestant and bingo No Tics for almost 24 hours !! I can't believe it. Praise God ! I just wish someone could explain to me how he can go from wild arm swinging, shoulder shrugging, head flipping tics one day to none the next. Has anyone seen any similar reactions after using OTC Motrin Jr. ? I have my apointment with my Peds Neuro next week. Surely she will think this is a sign of PANDAS. Do TS kids turn off and on this quickly like this ? But....lets see what happens tommorrow. Thanks for all the help and support I get from this group

Hello all - We start school in a week and I am so dreading it. Thomas has been ticcing away quite a bit in the safe home enviroment. I have had lots of pool play dates this summer because under water its hard to tell that he is ticcing as much as he is. He started ticcing after a bout of Impetigo (changed to azith after that) and has intermittantly ticced as a response to some virus or something else that has stimulated his immune system. - but its not the pool I know that ! Anyway I am trying to find out some strategies to deal with other kids who will tease Thomas. We have rehearsed answers to questions so that he knows an answer to immediately give. He will be in second grade. Last year a good number of kids didn't seem to notice,but this year ? I read the book "Living with Tourettes" this summer and it advocated standing up in front of the class to "tell everyone about it" in hopes that the other kids might just get used to his shaking and twitching. Anyone ever done this ? Any other school strategies to employ ? I did get my requested teacher who is very very nice and understanding. So I am happy about that. For the record Thomas is less concerned about all of this than I am. I am doing a good job of keeping my anxiety away from his notice. I am actutally the most concerned about the bus. He has a 45 min bus ride when he is the most tired and tics the most. There is a monitor but the kids are somewhat hot and rambuctious and the group teasing mentality does take over at times. Any and all input is appreciated. (just a review so you know who Thomas is - diagnosed with possible PANDAS Jan 2008. Went a year with neuro drugs that worked for a few weeks but then didn't really do anything. Got IVIG with DR. K in March. Has done much better with almost all other PANDAS symptoms except we still have the blasted tics. Dr. K says it can take up to a year for the tics to go away. Sometimes they don't ever go away (gulp !) Anybody have any experience with neuro drugs that maybe worked better after IVIG. We were on Orap and then Abilify. Sorry I am asking a lot of questions here. Many thanks ! Anne

Sorry for being so ignorant. but what is CLO ? We need all the help we can get for our tics !

Thanks for the info everyone ! I really appreciate learning from your experiences !

Now I get it. Thank you !!

After a blissful few weeks of only faint verbal tics, Thomas seems to be ramping up for another bout of tics. He started the head shaking and should tics yesterday. So I was thinking that I would think about getting his blood drawn for Dr. Cunninghams study. I have the box that she sent me here. Quick question - I see that I have 2 red top tubes for blood. What are the narrow plastic tubes with the blue screw top caps for ? Thomas is soooo afraid of needles, labs, doctors offices etc that I really have to be on my game with the instructions. We can't do any redraws ! Many Thanks ! I have read for some of you that you got positive results even though they were on prophylatic abx (Azith for us now) What about steroids ? With our bout of Impetigo at camp in June Dr. K gave up another round of Prednisone which seemed to calm the tics down. Will that affect the lab results. ? Thanks again.

Hello all. I wanted to give you an update on Thomas. We were diagnosed as having "possible PANDAS" by our PEDs Neuro Jan 08. We have had the same run around that all of you have had. However we have not had the same horrible symptoms that some of your children have. His main symptom is tics with some mild ADD symptoms and mild separation anxiety. He has not had an OCD, rages, or urinary issues. I mention this because we never saw the great "cure" from IVIG that some of you saw. Thomas did stop ticcing almost immediately in response to the steriod burst. 5 weeks later we had the IVIG. We did see the separation anxiety annd ADD symptoms improve. However he did have the worst tics ever after the IVIG. He went from head bobbing and faint vocal tics to these tonic clonic tics that invovled ever limb. Dr. K kept telling us to hold on that it was part of this "turning back the pages" phenomenon. That was hard considering the fact that the worst tics came after we had paid for the IVIG Just like Dr K said, the tics miraculously stopped and we had about 10 days of almost complete tic free existence. Then...he went to camp.......he came back with a mild case of Impetigo and ticcing to beat the band. The good news is that he had a great time. he had 2 counselors who were very low key and didn't make a big deal about it and supposed no onther kid even noticed. (according to Thomas) So now I am back to square 1. I have noticed that Thomas does seem to tic at the same time my other ADD son tends to get jumpy. I did have a educational psychologist tell me long before the tics started that he thought Thomas had ADD (along with me, my son, my sister, my two nephews as so on.) Has anyone noticed if non-stimulant ADD drugs help with the tics ? Thomas is the first person in our family to have tics. How do I know that the tics were just part of the ADD and he just happened to have a high strep titer when his onset of tics started. But we did have an abrupt start to the tics...thats part of the differential diagnosis isn't it ? As you can tell I am very confused. I read a book on Tourettes Syndrome last night. (yup..that good ole hyper focus) I did not realize that Tourettes is also highly associated with OCD, tics, and ADD, This is all so confusing. We are at a new low. For the first time ever, Thomas was asked to leave an activity at church this morning because he was "disturbing" the other children. This one very particular little girl just could not sit next to someone who was ticcing. Her Mom happened to be teaching the class. Thanks for letting me vent. Bless you all

Thanks for the advice....we have the vials but we are going to wait and see. Right now he is stable. His tics are slowly subsiding. He hasn't had any big motor tics for about a week, just vocal tics which are faint. I think you were right in saying that we really needed pre-IVIG values. If we had the bloodwork done and had "normal vlaues" then we would all be confused. Thanks Anne

Hello - My son developed Impetigo last winter. he was immediately started on a 10 day course of Bactrim which was great because it completely knocked his tics out. Really made us beleive that he had PNADAS and not just a tic disorder. good luck

Hi All of this sounds fascinating. I would like to get my son in the study. I don't know what the best time would be. He had IVIG on March 25 and 26th and is taking the prophylacitc amoxicillan dose. We have seen many symptoms such as the ADD like behavior, separation anxiety return to normal. Its hard to describe but his personality has retuned. However, he is still ticking a lot. For a while his tics were way worse than before we started. Is this considered an exacerbation ? Dr. K keeps telling me that these are signs that his body is "flipping back the pages" I don't know. I have had so many doubts. I am trying to keep the faith. I would like confirmation that he does indeed have PANDAS.

Claire - Could you keep me updated on your son's progress and your experiences with Dr. Perrin. I live on the other side of the state from you in New Bern. My son got diagnosed with PANDAS in Jan '08 when he started abruptly ticking and had a high strep titer. We were intially treated in Greenville. My husband is an MD and had some ties there. After a year on neuro drugs with no improvment, we decided to seek out some IVIG therapy. We could not find anyone in NC so we flew to Chicago to see Dr. K. Our son Thomas is much better. Like many parents on this board we have seen not completely smooth sailing but Thomas' tics have mostly stopped. We have seen a few irregular strange tics but his separation anxiety has disappeared and the ADD symptoms have improved. Anyway I would really like to have a MD in NC that could treat us. Please tell us experiences with Dr. Perrin and anyone else you have contact with at UNC Many thanks Anne Robertson

I have considered homeschooling. However Thomas is a very social kid and I think that he would be very lonely. Many people have told me that he wil grow up to be either a politician or a wall mart greater, (Its a toss up as to which I would prefer Thomas would probably feel like we were punishing him which of course I don't want him to feel. You know its intersting.....I have been keeping a log, but one thing I can't remember is whether or not he had ADD symptoms before the steroids. I remember him constatnly ticking and then showing some anxiety and then depression symptoms relating to the ticking. When he stopped ticking we were so relieved that he immediately returned to his sort of happy go lucky personality. It was then that we noticed the handwriting and the lack of focus problems. $100 per gram/kg of IVIG so that worked out to be 35 gr of IVIG for Thomas. So 3500 for the IVIG, add another 2000 for the facility fee and 2400 for Dr. K. They are going to file for coverage with BC/BS but I am not holding my breath. Plus the flight and hotel bills !

When he started abruptly ticking on 1/5/2008 he did have a very high strep titier. He did not have any symptoms (sore throats, fever, etc) of a current strep infection so nothng was cultured. As far as OCD symptoms, nothing that was real obvious. I have been on the look out for those. In fact my husband thinks that I have developed OCD by looking for OCD symptoms. Dr. k told me that "sometimes weird things happen" the first few days after IVIG and not to be alarmed. So far, notthing earth shattering. He did have a few moments of separation anxiety when gettin on the bus today to go to school. In the past few months he defintely has regressed. he is very old for his grade anyway so this was a little hard to watch. He wants to play with kids much younger than he is. Drl in his intial exam of Thomas said that he acted more like a 5-6 year old. He is 8. I have always atrributed that to the fact that his first year was just a wash. I adopted Thomas from a very poor orphange in Russia. He was 10 months at the time but acted more like 5-6 months. My older son is like that, too. But it the last 6 months he has regressed furthur. Luckily he is physically very small. So no one ever guesses that he is 8 and in the frist grade. Developmentally he is perfect.

I will do a better job of posting onthis board. At this point, we have a prescription for 3 months of Augmentin. I will ask Dr. K why he did not start us on Azith for the anti-inflammatory benefts. Maybe that comes later. Interesting to note that Thomas has had a postive response to several antibiotics. At first Amoxicillan would lessen his tics. he seems to have serial sinus infections and he always gets treated with Amox for those. Slowly the Amox did not lessen the tics as much. In February Thomas had some impetigo on his hands. He received Bactrim for that. Within 1 day he tics stopped with the Bactrim then after the 10 days ended his tics picked up again. The steroids provided the greatest amount of tic relief. It has been 5 weeks and counting post prednisone. Thomas is 8 and started abruptly ticking on Jan 5 2008 when he was 7. Since the prednisone he has had some mild ADD symptoms. My older son has ADD so I know what "not so mild" symtoms look like. His handwriting went from typical first grade to big loopy letters. Now if I sit in the vicinity of his desk (not helping just sitting) then his handwrting greatly improves. To me this is typical of ADD. Whn my older son was in 3rd grade learning multiplication, his teacher discovered that if she sat on a stool with 10 feet of him that he tests scores would improves by 10 points or more. She actually did a little "research" on how far she could set her stool. Thomas is a social butterfly and has trouble sitting in his seat anyway. Recently he had to take his achievement tests. He has trouble staying withing the little answer bubble. He made a much bigger circle around the bubble. From what I have read I am loathe to try him on any ADD meds. I just want to see if the IVIG and ABX help This school year is almost over anyway. Thanks for being interested. I sincerely hope all of us and our children get some relief from this condition. Anne

I just got back from Chicago with my son after receiving IVIG over 2 days. We had such a postivie response to the steroid burst that it only made sense to follow through with the IVIG and the antibiotics. We went through a school year of almost constant ticking. In the summer when he was not in close indoor contact with other kids his tics dies down considerably. However 2 weeks after school started, BAM ! he was ticking once a second. Through our Ped Neuro we tried several neuro drugs including Orap and Abiify. These drugs did not cause any reduction in the tics. This winter we really had some social issues developing along with the separation anxiety. By day 2 of the steroid burst, Thomas stopped ticking and has continued that despite being exposed to multiple viruses that our family has had during the cold soggy month of March. Thomas has had a fever virus and a sinus infection with no tics. So I am fan of the steriods ! We had a very nice experience with Dr. K Like all of you I had my encounters with health professional who do not believe that PANDAS exists. I am grateful for having found an MD who can "think outsde the box" I was impressed beause he asked for things, no neuro had ever asked for. He wanted samples of handwriting, pictures that Thomas had drawn, and video. We will continue to provide these for a year. Its not cheap, but so far the steriod burst and the IVIG have been life savers.

I just wanted to say "thank you" for all the support I have recieved since I joyed this discussion board just 1 week ago. I am very sorry that all of our children and families have to endure PANDAS, but at least we have each other. I have a phone consultation with Dr. K tommorrow and Iam excited. I feel like I am finally on the right road. Blessings to you all

On January 5th 2008 at 5;30 pm my 7 year old son started having tics.....double head nods coming about 1 every 15 seconds then to an almost constant ticking state. Since then he had undergone a CAT scan, ECG test and ruled all that out. We started seeing a PEds Neuro who diagnosed him with either a TIC Disorder or PANDAS. She has treated him with Orap and Abilify. Both neuro drugs seem to initially work by slowing the tics down for about a month, then they slowly don't work. The tics return. This summer he had very few tics and was weaned off of all drugs. Two weeks after school starts he starts ticking again. He almost has head bobs but sometimes has vocal tics and shoulder shruggs. Sometimes he does this little "dance" - hard to descirbe. My husband and I can't decide if this is a tic or if he does this to cover up the tics. He had a high strep titer when he satarted ticking. Since then has had multiple bots of URI and sinusitis but no positive test for strep. The first couple times he received Amoxicillan his tics subsided almost incredibly. This last time January 2009 the tics got worse. We are getting very frustrated. He has started to show signs of social anxiety. He has been asked about his tics and he responds well to other kids. "thats just something God wants me to do" but then falls apart in private. Our Peds neuro wants to start him on Zoloft. I have an appointment with a counselor who will hopefully lead us down a path to better acceptance and will help his self esteem. Thomas was a very outgoing child who loved to socialize. It is incredibly sad to see that part pf his personality being taken away from him. I have spoken to Dr. K in Chicago who has confirmed via email that he thinks Thomas has PANDAS. Has anyone gone to him ? How long does it take to get an appointment with him ? Has anyone tried IVIG ? What are your experiences. I am a homecare RN and I have given IVIG several times so I am not afraid of the drug. I wish my insurance compnay BC/BS would pay for it. If anyone has any advice for me I would love to hear it. right now we are at our wits end. Yesterday he was dignosed with impetigo. Out peds told us that winter impetigo was often caused by MRSA. (now I am scared) and started him on Bactrim. I am curious to see what that does to his tics. many thanks for your help.