_Jennifer_

My son has always had problems. He was diagnosed with TS at 5 in kindergarten, and had problems every year with OCD, attention social interaction, the school diagnosed him with aspergers (at age 7) and after I read a book about this I realized he had every asperger issue in the book. So the school has treated him for aspergers. He was able to handle school for the most, he needed a little help from other students, His IQ is extremely high but he still needed a little help. In fourth grade he was getting up to his alarm and taking a bath by himself (I was just supervising) he was getting dressed and brushing his teeth and even making his own bowl of cereal. He continued this all the way through 5 th grade. In 5th grade his school was worried he would not do well in a regular middle school, 6 class changes and the work load. So I put him in a private school where 40% of the students had aspergers. It was similar to his elementary school. No class changes and no homework ever. But after only a month he was no longer taking a bath by himself still to this day (he is 13 now) I have to wash his hair and put the tooth paste on his tooth brush, he is going through puberty so its strange for me to bathe my 13 year old son but he could care less if anyone sees him naked. He started brushing his own teeth again but his OCD is so bad it takes him about 20 minutes to complete the process. He is not the same kid I had in elementary school. He is so different. He was only at this school for 12 weeks until his behavior was so bad they asked us to not come back, they said they have never seen anything like this, the first few weeks they told me yes he has aspergers and he is just like all the other children, than over night they changed there tone. I asked my son the other day if he could remember the last time he had a sore throat? My son has a photographic and remarkable memory. He answered me like I was stupid for mot remembering this (he thinks everyone has his memory) really annoyed that I could not recall his last sore throat he answered "at the academy (private school) remember I told you that I told my teacher I had strep throat and she asked me what kind of doctor I was. They checked my temp and told me I had no fever and to go sit back down". I don't recall this but he insists this had occurred. He said his throat only hurt for about a day and a half and that I never took him to the doctors office. I was told about a month ago that he had panadas and thats why is behavior is the way it is. But his Neurologist told me he did not have panadas. He just has TS and aspergers. And that his regression was due to his aspergers, not panadas. Now what?

My son is having a terrible time, he was diagnosed with panadas (by a private pediatrician/Psychiatrist) just to have his neurologist hold my hand and tell me my son does not have this, He told me its just TS and aspergers not panadas, so now I want to look at food allergies, I need to know where to go, should I have his regular doctor send him to an allergist or do I need to take him to a DAN doctor, what test will a DAN doctor order? If I had a list of needed test maybe his regular doctor can order them, I have spent over 1,000$ a month on my sons treatments with no success, He was finally approved for state aid. I am finding it pays for everything so far, maybe allergy tests would be covered as well. He only eats food high in gluten and loves milk. Can anyone lead me in the right direction, I would like to have these test done here in KY so they are paid for, than I could take the results to a DAN doctor to hear what they have to say. There is a DAN doctor in IN but not one in KY. Where so I get a list of DAN doctor test?

He has only been tested for allergies when he was four, he had a throat clearing and cough tic, but I thought he was sick. At that time he was only allergic to mold, as we most are according to his allergist. Sodas have been forbidden in my house as long as my kids have been alive I just think they are crap. But never at a family members house until a few years ago. My grandmother and mother would allow them to drink Mountain Dew yes I said it Mountain Dew, my youngest was okay but my Oldest with Tourette Syndrome would start repeating words very loud and in a silly voice had super energy was jumping and talking very fast in my fast and laughing, he was happy, just to happy and totally uncontrollable. After he had consumed Caffeine, So I thought it was the Caffeine but than I noticed the same reaction to Fanta this has no Caffeine, I had allowed him to have this on our road trip to FL last spring break and he had the same reaction, I think it was the red dye 40, I don't really no what it is. He is only allowed to have juicy juice, or V-Fusion he drinks alot of them. He will only eat Pizza as his main source of calories while my younger son and I eat pork chops and potatoes for dinner he is eating pizza every night, He will eat scrambled eggs from time to time and cereal loves milk (organic only) also goldfish and cookies lots of junk this started around four or five he was a decent eater until five. He takes two of KIRKMANS vitamins every day and I had even started him on the gluten free diet at the start of the school year, but he started going crazy and his behavior was so terrible at school they were asking me if I had considered putting him in a hospital so I stopped the diet that day, I should have started it over the summer but I didn't so here we are, He only eats foods high in gluten only gluten I noticed this when we started the diet, I had to get rid of everything. I think maybe now if he can be treated for the strep hopefully we can go back to the diet, can a DAN doctor test him to see if this diet can help? He also has Post strep glomerulonephritis I read this can cause kidney failure and his pediatrician ordered him to see a Nephrologist Friday but the girl at his office has yet to set it up I have called twice a day every day, This can cause kidney failure from what I read and heart failure as well. Its like Rheumatic fever of the kidneys I think. I think he needs antibiotics for that as well as his pandas. He goes to the neurologist in the morning so I hope they treat him. The only Dan doctor near me is in Indianapolis IN that's only four hours away I think, so that's not bad I just looked one up, If she orders the tests can we go to our lab back in KY or will it have to be in the location of the Dan doctor? I heard the diet only works on three year old children is that not true. My mother has non tropical spru (gluten and milk allergy disorder) she says it went away after her pregnancy with me but she still has alot of symptoms and can not drink milk. But she says its not that its an ulcer and that it went away. You know mothers they know it all. Thank you for your concern I really feel like I have people to talk with, my friends stop calling me when I start to brainstorm to them about my son. They will disappear for a few months. So thanks again. Jennifer

Thank you so much for responding, I live in Louisville Ky. I will contact this Dr. K he sounds like just what my son needs. Well the OCD was first noted at age 2 but very mild. Things like finishing walking patterns he would start them over if he did not complete it a certain way, he would line up his snacks and toys in a straight line and it had to be perfect. I looked at his medical records and when he was 5, I took him in for a sore throat and fever his culture was neg and no antibiotics were given, This is the case in one out of four visits, I know I took him in thinking he needed treatment but looking at his records in 13 years was only given antibiotics about four times out of about 16 visits for sore throats and ear infections the cultures were always neg so they sent us home. So when he was 5, it shows I took him in for a sore throat and a neg culture (on 12-04-00), the next time we went to the doctor on (2-21-01) it reads discuss behavioral problems, He was sent to be evaluated and than diagnosed with Tourette syndrome, that's been over 7 years ago, His behavior at 5 was so horrible I felt like a failure as a parent, This child was given so much love and one on one with me I never spanked or yelled but he acted over night like an abused child or a child who received no attention from anyone but it was the complete opposite my husband new Christian was never treated anyway but great so he would yell at me to spank him and that I babied him to much that he needed discipline and time outs, I knew that was not the answer because his behavior was never mean or hurtful just really really annoying, I couldn't discipline him for being annoying so we divorced this all happened in-between the two dates I listed above, the doctor wrote on the visit report of 2-21-01 that parents have separated, I remember fighting for the evaluation but I didn't remember why I had to fight until I read about my separation I guess I had forgotten when that had happened. His behavior was hard to handle in elementary school at least for the school, having the TS diagnosis I just treated him like he was great and would calmly explain things to him, things he was doing a little different than other children his age. He has a super memory so I just asked him if he remembers the last time he had a sore throat, he instantly responded and told me when he was at the Academy, this is a private school for children with aspergers and other disorders, well he was only there in 6th grade from aug-nov, in nov he was kicked out of this school and I had to enroll him into a public school, Christian just told me that when he was there he had a sore throat and told his teacher he thought he had strep through he had it in the past so I guess he remembered sore throat means strep, he claims his teacher first asked him if he was a doctor and told him he could not go home unless he had a fever. I don't recall this but he claims it only hurt for about a day, This is when his already hard to handle OCD behavior got 10Xs worse so public school he went, He has a personal assistant after hiring a lawyer in 6th grade the school would write him up for ticking, he hummed in a pattern constantly and told them he could not stop I educated them all with no luck until I brought a lawyer to a meeting. This trouble started in 6th grade and he has never recovered, he is in 8th grade now but still has this crazy OCD that only gets worse every year, He snaps his fingers next to his right ear than his left all the time, and he will tell you its his OCD, he knows all about OCD and understands when something he is doing is related to that. I could list many OCD behaviors he has but I think people on here understand without me stating all 100 things he does. He is a mess and people have been telling me for about three years that he is unlike any other child they have ever seen, (because he is so verbal and can debate any subject very intellectually) but often he is overcome with OCD and tics so he wants everything very quite, but when things are good for him he really is like a typical person that's what throws everyone off. He has autistic behavior about 90 percent of the time so that 10 percent is so special, its come out some times, I can see how wonderful he is but he is in so much mental and physical pain. Well he has alot of dental visits, he goes every 6 months for a cleaning and each time they find something that needs fixing, he grinds his teeth so bad they have to build them up every year (his molars) every baby tooth will hang on for dear life until his new tooth splits it in two and still the back part of his baby teeth will stay in his mouth so they are constantly pulling his baby teeth. Now he is 13 so that's all behind us just the grinding ,, He is at the dentist so often I can't seem to make the connection I just know he hates it and is very quite in the car ride home. usually sleeps a lot afterwards but I just relate that to his anxiety and stress he gets before he sees the dentist.

My 13 year old son started doing this around 3, around 6 he started chewing holes in his shirts after wearing them only once, so no hand downs for my younger son but he stopped this around 10, he has tourette syndrome and aspergers and pandas, at 10 he started spitting on the floor, he hated this so I told him to spit into his shirt, some days after school his shirt would have 5 inches down of wet spit at least he wasn't spitting on the floor anymore. He is now 13 and is spitting into his shirt much less. now my younger son has started biting holes in his shirt, but no other symptoms. Jennifer

We were just diagnosed a week ago with panadas, so still new to all of this. My son is 13, when he was 9 he started having what we called a urination tic, after the doctors told me he was fine. I just thought well it had to be OCD or a tic, he would go to the bathroom sometimes every 5 minutes, on the way to Disney 18 hour drive it was so bad I had him pee into an empty juicy juice bottle, I have never told anyone that. At school he had to go so much a teacher sent a student to listen and report back to her how much urine he heard go into the toilet, My son will still recall and feel the urge to relive that story for some reason. He always tells it the same way if he hears me talk about his urine tic to a doctor. Going to the grocery store or any store, he would go 2 or 3 times, eventually he new exactly where every stores bathroom was located. it did seem to just go away one day about 2 years ago never returning. He was given the diagnosis of post streptococcal glomerulonephritis as well as panada and Sydenham's Chorea, about a week ago. We have all the appointments lined up just waiting on the days to go by. I am not sure what to make of it. During the urination tic his UA were normal and the one repeated after that was ok, but now he has 2+ protein, 2+ Occult blood, specific gravity is high, BUN/Creatinine Ratio is high, RBC are high, and mucus threads are present. I have picked up some of his records and waiting on the others to be ready to pick up. My son has been seeing a school counselor who visits with all the children in our district with tourette syndrome, He started seeing her when he was 7, any who, we were talking the other day and she said that one of her mothers brought up her TS pandas Childs birth and recalled having group b strep, we are tested when we are in our 35th week of pregnancy, well she tested Positive as due alot of people and had the antibiotics during delivery, well her son was born and tested positive for strep A. I haven't read anything about this on the internet but thought it was interesting, I don't recall being tested with my TS son, I definitely did not receive antibiotics with his birth but was positive with my second delivery and given the antibiotics with him. just thought it was interesting I wonder how many TS mothers tested positive for this strep. I thought TS consumed my life but this PANDAS is no joke I feel like there will never be an end to his suffering. well sorry for rambling and good luck with everything Jennifer

My son was diagnosed with TS when he was 5, now he is 13 and going through puberty, He has has OCD ADD and TICS for 8 years, they are much worse when he started going through puberty, His stimulants have always made his tics twice as bad but he just went on with his day ticing, now his tics are similar to the first man who had deep brain stimulation surgery (due to the stimulants) my son also has undiagnosed Aspergers (his school says he has this) He has had two evaluations in the past and they both say he only has TS and that TS is causing him to have odd social problems. He is high superior in intelligence and is like a science and math genius. Off Stimulants he wanders the school (he has his own adult assistant at school) and will walk in other classrooms and say "hey guys how's it going" during class, he will argue everything until he gets the last word, he will correct every grammar error his teachers makes and he is serious, last year there were several errors in the year book and marched into the principles office and demanded a reprint for the entire school he was truly upset, they had to call me so that I could calm him down. He's not trying to be bad this is just who he is. On the stimulant he sits and is Obsessed with his class work and his teacher. Now he is home and I can't give him his stimulant because now he tics so so bad he cries and screams "I hate you for giving me that medicine, please, I can do it now without meds" He loves school so much he wants to go in early every day, and hates to miss any school. A week ago his new doctor (psychiatrist) after getting back his labs told me he had Syndham chorea and pandas and that he has strep in his brain. She told me he probably got it when he was three. His last sore throat was at 5 and they tested him for strep with a neg result when he was 5 (I picked up his med records) that was the last time he has had a fever or sore throat, he hasn't had antibiotics for over 8 years because he has not been sick so how can he have this in his brain (also has post strep glomerulonephritis). We are still waiting for the new Dr appointments. His Antistreptolysin O Ab test is 323.5 and his Anti-Dnase B strep antibodies is 1:480 I don't have a clue what's going on. He is like an autistic child with meltdowns for no reasons and hates to be touched and hates bright lights and talks very loud and gets excited easily he paces back and forth all day long, he has a photographic memory I think this is why he is so smart. He is color blind. He has always been very pale with purple rings around his eyes, He is very white and burns in the sun very easily, he has always been underweight off the charts underweight but wears husky pants because of his belly. I had read about pandas about 5 years ago and was told by his neurologist that its not real. I am so confused I don't no what to do he cant learn off stimulants and cant tolerate the tics on stimulants anymore. Off stimulants he always tics but they are normal constant tics not violent crazy head turning tics, he is so miserable has had steady tics every day for over 8 years I only give I'm the stimulants when he has school never on the weekends or summer. Sorry for adding my first post with so much information and confusion, maybe someone can tell me what to expect from the doctors or what I should do he is going to see a cardiologist, a kidney doctor and his neurologist in the next few weeks.