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hello,

 

i am new to latitudes and soooo glad i was told about this site from a friend. my son is now 9 and has had tics since he was 5. it started when he was in kindergarten and his teacher was unable to control him in class. he was sick alot that yr with sore throat,strep infections and ear infections. around christmas his teacher called me while i was at work and told me he was acting up in class and pretty much told me he needed to be checked for ADHD. soooo being the worried parents we were we took him to his pediatrition and they just gave us adderall and sent us on his way. yes it helped with hyperness but made my happy 5yr old a zombie at christmas and it broke my heart. our dr then put him on focolin and we kept him on that until march that yr. then that march we noticed he started having small tics. so his dr told us to take him off the meds so we did and the tics to this day have never gone away. the following year we moved across town and switched schools and decided to keep him back in kindergarten being he didn't have a great yr the yr before. we then were referred to one of the best hospitals in our state that deals with tic disorders and adhd. we were told while we were there after describing how our yr had been that he seemed to have a mild tic disorder that the adhd medicine brought out and that if he wasnt given the meds at that time the tics would have come out anyway. he also has a horrible time going to bed so they did blood work and found his iron level was extremly low and called out a liquid iron supplement he had to take for 3 months. we didn't notice any change in the bedtime issues. this hospital called him out klonipon which seemed to help for about 2 months then the tics came back and were horrible. his tics consist of a throat clearing noise, a head pop like he is saying yes,rolling his eyes. new this yr (past 3 months) popping knuckles, and when walking he hops a lil . these don't all happen at the same time. they always seem to start the same time of yr. he goes months were things are fine then all the sudden he will start back up with the humming/ throat clearing noise then that one stops then the eye rolling begins and so on. the hospital we went to said that being his grades were good and no complaints from teachers over behavior over the last 2 yrs they dont think he had ADHD at all that maybe he just wasn't ready to start kindergarten when we started him the first time. this breaks my heart and i feel sooo bad for him. i don't know what else to do to help him.

however he was recently swabbed for strep throat being he had strep throat 6 times in 1 yr and finally had tonsils out 2 summers ago when he was 7 . it has helped with him not getting sick but i have noticed that when is sick with sore throat the tics get really bad. i was told about PANDAS did some research and got with his pedi. his 5yr brother had strep about 4 wks ago and his tics got really bad at that time and she said that is a sign being someone in the house could have strep and he could start tics from that. she did a throat culture on him and it was negative so she told me he didn't have it.

i am sooo lost and don't know where to turn next. he is scheduled to have his allergies tested this wednesday being dr has seen links in tics and some food allergies.

 

if anyone out there can give me some advice i would love it. i know deep down i am probably looking at tourettes but he has never been diagnosed with that. it is always told to us he has a mild tic disorder. i just want to cry because being a mom you want to fix your child and help them when they are sick or hurting and i just can't. please help me out if you can and if you are from texas and know of any dr's that come highly recommended for tic issues please let me know.

 

thanks

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Stay away from Texas Children's Hospital - TCH. They DO NOT believe and will not help you with pandas plus they have l...o...n...g waiting times for appointments. Any ped associated with TCH will also not be able to help because they follow TCH procedures. We are seeking help out-of-state by one of the 5 panda doctors recommended by this forum. Rule out lyme and pandas first. There is lots of info available here. There are a couple of doctors listed in Texas but I have never used them. My son is 19 (got sick at 7 and found out about pandas at 8) and we are running out of time. His life has been on hold for 12 years waiting for help. Good Luck.

Edited by mkur
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HI,

I'm sorry to hear what you are going through, but glad you found this group. I'm not well versed on the tic side of PANDAS, my daughter has OCD symptoms. Did you notice at all whether things improved when your son was treated with antibiotics? As for the recent negative strep test, I wouldn't put much stock in it. Your son has clearly had it in the past and sometimes throat cultures come back false negative (or the swab that was done was did not get a good enough sample). And PANDAS children often react to any immune challenge - not just strep - after the initial infection.

 

Have you looked at the "helpful threads" at the top of this forum? There is a great Question and Answers Document that might help answer a lot of questions. Although there is not yet a formal, official way to diagnose and treat PANDAS, generally the parents on this forum proceed with some form of antibiotics, possibly steroids (to help diagnose and calm things down in the short term - although this may not be the best for all kids - see the Q&A), IVIG and/or plasmapherisis are also treatments that many people are trying. Every child is different and treatment can vary.

 

There is hope. Many children have had PANDAS for several years and are recovering or have recovered.

 

If you can afford it ($400), you may want to consider participating in Dr. Cunningham's study as well. Having the results can make a huge difference in helping determine whether your child has PANDAS. That is also discussed on the Q&A.

 

Best wishes,

Kara

 

 

 

hello,

 

i am new to latitudes and soooo glad i was told about this site from a friend. my son is now 9 and has had tics since he was 5. it started when he was in kindergarten and his teacher was unable to control him in class. he was sick alot that yr with sore throat,strep infections and ear infections. around christmas his teacher called me while i was at work and told me he was acting up in class and pretty much told me he needed to be checked for ADHD. soooo being the worried parents we were we took him to his pediatrition and they just gave us adderall and sent us on his way. yes it helped with hyperness but made my happy 5yr old a zombie at christmas and it broke my heart. our dr then put him on focolin and we kept him on that until march that yr. then that march we noticed he started having small tics. so his dr told us to take him off the meds so we did and the tics to this day have never gone away. the following year we moved across town and switched schools and decided to keep him back in kindergarten being he didn't have a great yr the yr before. we then were referred to one of the best hospitals in our state that deals with tic disorders and adhd. we were told while we were there after describing how our yr had been that he seemed to have a mild tic disorder that the adhd medicine brought out and that if he wasnt given the meds at that time the tics would have come out anyway. he also has a horrible time going to bed so they did blood work and found his iron level was extremly low and called out a liquid iron supplement he had to take for 3 months. we didn't notice any change in the bedtime issues. this hospital called him out klonipon which seemed to help for about 2 months then the tics came back and were horrible. his tics consist of a throat clearing noise, a head pop like he is saying yes,rolling his eyes. new this yr (past 3 months) popping knuckles, and when walking he hops a lil . these don't all happen at the same time. they always seem to start the same time of yr. he goes months were things are fine then all the sudden he will start back up with the humming/ throat clearing noise then that one stops then the eye rolling begins and so on. the hospital we went to said that being his grades were good and no complaints from teachers over behavior over the last 2 yrs they dont think he had ADHD at all that maybe he just wasn't ready to start kindergarten when we started him the first time. this breaks my heart and i feel sooo bad for him. i don't know what else to do to help him.

however he was recently swabbed for strep throat being he had strep throat 6 times in 1 yr and finally had tonsils out 2 summers ago when he was 7 . it has helped with him not getting sick but i have noticed that when is sick with sore throat the tics get really bad. i was told about PANDAS did some research and got with his pedi. his 5yr brother had strep about 4 wks ago and his tics got really bad at that time and she said that is a sign being someone in the house could have strep and he could start tics from that. she did a throat culture on him and it was negative so she told me he didn't have it.

i am sooo lost and don't know where to turn next. he is scheduled to have his allergies tested this wednesday being dr has seen links in tics and some food allergies.

 

if anyone out there can give me some advice i would love it. i know deep down i am probably looking at tourettes but he has never been diagnosed with that. it is always told to us he has a mild tic disorder. i just want to cry because being a mom you want to fix your child and help them when they are sick or hurting and i just can't. please help me out if you can and if you are from texas and know of any dr's that come highly recommended for tic issues please let me know.

 

thanks

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Kamkoop --

 

I can tell you from experience that a negative throat swab is not a viable test for either strep or PANDAS. Sometimes the swab test is not conducted correctly, and sometimes the child will be classically asymptomatic, but display other signs of the autoimmune response to the bacteria, such as the behavior manifestations or high strep titers.

 

One possible step for you might be to request blood draws for the ASO and AntiDnase-B titers; this is not by any means a definitive test, and many parents here have PANDAS kids for whom titers are not elevated. Still, this is a relatively immediate, non-invasive and more standard testing that you can get, and if the results DO, in your case, reveal elevated titers, you might have more luck getting your local pediatrician, or finding another local doctor, to help you, at least in the interim while you seek out more "durable" PANDAS medical help.

 

In the end, though, you're probably going to have to seek out one of the noted PANDAS physicians (tagged here in the forum)for studied and experienced PANDAS treatment and advice.

 

Good luck to you!

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Stay away from Texas Children's Hospital - TCH. They do NOT believe and will not help you plus they have l...o...n...g waiting times for appointments. Any ped associated with TCH will also not be able to help because they follow TCH procedures. We are seeking help out-of-state by one of the 5 panda doctors recommended by this forum. Rule out lyme and pandas first. There is lots of info available here. There are a couple of doctors listed in Texas but I have never used them. My son is 19 (got sick at 7 and found out about pandas at 8) and we are running out of time. His life has been on hold for 12 years waiting for help. Good Luck.

 

 

this is exactly were we went and saw a nurse practicioner (dr engle) when we went for a follow up 6months later we saw the head of neuology and he told us that if the child can control it that is was considered a mild tic disorder. nothing else they could do. they were releasing him and if he started having tics again they could refer us to baylor medical to a dr that speacializes in tic disorders. i did ask the dr at tx childrens if allergies could be involved and cause some of the tics and he laughed and just shook his head and said no. i also brought up PANDAS to him and he again said no .when we left there i just wanted to cry because i felt as if we got nothing accomplished and my husband just somehow can ignore the tics and if i mention them he tells me to just stop he is fine and will get over it. well yes he does but he is also going to the 3rd grade and as we know kids can be mean. he is a very sweet,shy in ways but outgoing child. i would feel soooo horrible if i sent him back to school with him popping his head like he is doing now and kids make fun of him. he is very active in baseball and we did notice that this year his confidence went to nothing as well as him kind of reverting back to a younger stage in life. i am however pregnant with our 3 and it is a girl so we now have 2 boys 9 and 5 and will have a girl in september. our dr even brought up that this could be an issue with why tics are back and for some reason really bad. i just don't know what you call this tics,tourettes,pandas. i just want a diagnoses. the teachers at his school say he is fine and they don't notice anything in class.

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his 5yr brother had strep about 4 wks ago and his tics got really bad at that time and she said that is a sign being someone in the house could have strep and he could start tics from that. she did a throat culture on him and it was negative so she told me he didn't have it.

Your son experiencing increased symptoms in response to exposure from his brother (when he is negative for strep) is actually a sign in favor of a PANDAS dx. Because the immune system makes antibodies when it is exposed to pathogens to prevent infection, it indicates his reaction is caused by antibodies, not infection, which is the case w/ PANDAS. We call that "canary" effect.

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his 5yr brother had strep about 4 wks ago and his tics got really bad at that time and she said that is a sign being someone in the house could have strep and he could start tics from that. she did a throat culture on him and it was negative so she told me he didn't have it.

Your son experiencing increased symptoms in response to exposure from his brother (when he is negative for strep) is actually a sign in favor of a PANDAS dx. Because the immune system makes antibodies when it is exposed to pathogens to prevent infection, it indicates his reaction is caused by antibodies, not infection, which is the case w/ PANDAS. We call that "canary" effect.

 

 

i just am sooo frusterated right now because his dr. just assumed his throat culture was going to be positive and give him some meds and move on. i know in the post above i was asked how he reacted on antibiotics. well from watching when he is sick being on amoxicillion does help. last few times he did have strep his dr gave him augmeton and i didn't notice a change in tics. i did tell her last time he had strep that i was noticing alot of things that were making me think the strep and throat infections were making him tic more. she then mentions PANDAS so about 4 wks ago when his brother had strep and it was confirmed by dr i called her that following week and told her that his tics had gotten really bad and she then told me that it was a possibility he had PANDAS being he was being affected by brothers strep. that is when we went to get throat culture and it was negative and that is where it stopped. the 5yr old is still crying with throat hurting but does have really bad allergies so dr said throat is prob raw from drainage. well with his tics getting worse and a new one started yesterday (head popping) i feel like calling her and making an appt again and saying look here is what is going on can we treat the 5yr old for his throat and do blood work on the 9yr old.

 

i just get tired of them saying ok well no it isn't tourettes, but he fits that discription as far as just vocal tics and motor tics not the really bad things you see on tv. then they say yes it is a mild tic disorder but could be tourettes. i am like look somebody help me and please help him. then the pandas thing was brought up and no one has done blood work yet. i just hate seeing him get upset because he can't make it stop and i know they say not to bring to his attention because if you correct them it makes it worse but it is soooo annoying (vocal humming/ mummbling) no the head popping. i feel sooo bad for him.

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I have spent a lot of time with tourette children. All of them are different. Most diagnosed (mild cases are not treated) TS kids have some co-morbid condition and these are the really problems with school (ADHD, OCD etc). The children that have TS are probably on some med which will mask the symptoms - so even if you meet them you will not see the whole picture. Some (not all) TS kids are big ticcers - have loud or lots of physical tics or painful tics. A lot of the TS kids can repress their tics until later so again you will not see the whole picture. Anyhow the point is: There is no poster child for TS. From the info on this forum the PANDAS kids are also different. My panda son and his panda cousin are different - different onsets and different outcomes.

 

As a mom it is v.e.r.y frustrating to do nothing and have to wait for visits to doctors. So try some different things like the following. A lot of the moms find that ibuprofen helps with the pandas symptoms - inflammation. I know it helps with pain from tics. A lot of moms give baths with epsom salt to detox. Have you tried fish oil - omega 3? Do a search on this forum for more info of different things to try - it will make you feel better.

 

Make an appt with DS ped and try to get antibiotics - look for upper respiratory infection - sinus problems (this is Texas everyone has sinus problems). If you cannot see a PANDAS doctor go see an immunologist. I wish I had done this for my son. A lot of these kids have other problems with their immune systems. It's worth checking.

 

Call the Tourette Syndrome of Texas and ask for tips to help your son with his neck tic, ways to ease the pain or reduce the intensity of the tic.

 

If you can afford it, do the Cunningham test.

 

Good luck.

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I have spent a lot of time with tourette children. All of them are different. Most diagnosed (mild cases are not treated) TS kids have some co-morbid condition and these are the really problems with school (ADHD, OCD etc). The children that have TS are probably on some med which will mask the symptoms - so even if you meet them you will not see the whole picture. Some (not all) TS kids are big ticcers - have loud or lots of physical tics or painful tics. A lot of the TS kids can repress their tics until later so again you will not see the whole picture. Anyhow the point is: There is no poster child for TS. From the info on this forum the PANDAS kids are also different. My panda son and his panda cousin are different - different onsets and different outcomes.

 

As a mom it is v.e.r.y frustrating to do nothing and have to wait for visits to doctors. So try some different things like the following. A lot of the moms find that ibuprofen helps with the pandas symptoms - inflammation. I know it helps with pain from tics. A lot of moms give baths with epsom salt to detox. Have you tried fish oil - omega 3? Do a search on this forum for more info of different things to try - it will make you feel better.

 

Make an appt with DS ped and try to get antibiotics - look for upper respiratory infection - sinus problems (this is Texas everyone has sinus problems). If you cannot see a PANDAS doctor go see an immunologist. I wish I had done this for my son. A lot of these kids have other problems with their immune systems. It's worth checking.

 

Call the Tourette Syndrome of Texas and ask for tips to help your son with his neck tic, ways to ease the pain or reduce the intensity of the tic.

 

If you can afford it, do the Cunningham test.

 

Good luck.

 

 

thank you so much mkur

i did have a friend tell me about the ibuprofen but haven't tried it yet. i will do that tonight being he is popping his head like crazy. he is scheduled to see an allergies/immunologist on wednesday and i hope we can get some kind of answers. alot that i talk to dont see a relation with food allergies and tics but i have noticed that if i give him ice cream his verbal tics (humming sounds) come on very quick and don't just go away. as far as food dye's i have noticed he gets very hyper and he doesn't even realize he is ticcing. he does i know for sure have some kind of reaction to red sauce ( ketchup being #1) his ear lobes turn bright red. i know he has food allergies it is just going to be a pain getting him straightened out once we find out but i will do what i can to get him as close to tic free as i can. i will have to try the epsom salt as well. thanks again for your help.

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We are new to the PANDAS world and are currently looking into Lyme also being an issue for my ds(10). We see one of the PANDAS doctors listed on the board. My son has had an eye tic for 7 years and over the past year we have started to really try to understand what is causing it and what his triggers are. We know that sugar and food dyes are big triggers for him. We had food sensitivity testing done and discovered some issues there too (it helped clear up his eczema too). We have eliminated all artificial dyes and try to use minimal sugar. We also eat organic as much as we can.

 

I have spent a lot of time with tourette children. All of them are different. Most diagnosed (mild cases are not treated) TS kids have some co-morbid condition and these are the really problems with school (ADHD, OCD etc). The children that have TS are probably on some med which will mask the symptoms - so even if you meet them you will not see the whole picture. Some (not all) TS kids are big ticcers - have loud or lots of physical tics or painful tics. A lot of the TS kids can repress their tics until later so again you will not see the whole picture. Anyhow the point is: There is no poster child for TS. From the info on this forum the PANDAS kids are also different. My panda son and his panda cousin are different - different onsets and different outcomes.

 

As a mom it is v.e.r.y frustrating to do nothing and have to wait for visits to doctors. So try some different things like the following. A lot of the moms find that ibuprofen helps with the pandas symptoms - inflammation. I know it helps with pain from tics. A lot of moms give baths with epsom salt to detox. Have you tried fish oil - omega 3? Do a search on this forum for more info of different things to try - it will make you feel better.

 

Make an appt with DS ped and try to get antibiotics - look for upper respiratory infection - sinus problems (this is Texas everyone has sinus problems). If you cannot see a PANDAS doctor go see an immunologist. I wish I had done this for my son. A lot of these kids have other problems with their immune systems. It's worth checking.

 

Call the Tourette Syndrome of Texas and ask for tips to help your son with his neck tic, ways to ease the pain or reduce the intensity of the tic.

 

If you can afford it, do the Cunningham test.

 

Good luck.

 

 

thank you so much mkur

i did have a friend tell me about the ibuprofen but haven't tried it yet. i will do that tonight being he is popping his head like crazy. he is scheduled to see an allergies/immunologist on wednesday and i hope we can get some kind of answers. alot that i talk to dont see a relation with food allergies and tics but i have noticed that if i give him ice cream his verbal tics (humming sounds) come on very quick and don't just go away. as far as food dye's i have noticed he gets very hyper and he doesn't even realize he is ticcing. he does i know for sure have some kind of reaction to red sauce ( ketchup being #1) his ear lobes turn bright red. i know he has food allergies it is just going to be a pain getting him straightened out once we find out but i will do what i can to get him as close to tic free as i can. i will have to try the epsom salt as well. thanks again for your help.

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I am so sorry you are dealing with this. The good part is that you're not alone and you've found this forum. Since your ds has a history of Strep it really is a mark in favor of PANDAS. Also there are several PANDAS Dr's listed on this site that you can see. They all have good reputations and truely can help you determine exactly what your problem is while many doctors will simply shrug it off as too rare or non-existant. Dr. K will do phone consults without seeing you first. That is what I am going to do since I live in SC (there are no PANDAS docs near me). Dr's Lattimer and Dr. B want to see you first but then will treat you long distance unless IVIG of course and you would have to travel for that.

 

I just really recommend seeing one of the several PANDAS docs before you decide it is TS. Given that history of Strep and siblings with Strep bringing it out it REALLY sounds like it's a Strep related disorder and TS is not. Give it a shot and then you can feel good about whatever the decision is.

 

Good luck.

 

Kristy

Edited by Kristy S
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his 5yr brother had strep about 4 wks ago and his tics got really bad at that time and she said that is a sign being someone in the house could have strep and he could start tics from that. she did a throat culture on him and it was negative so she told me he didn't have it.

Your son experiencing increased symptoms in response to exposure from his brother (when he is negative for strep) is actually a sign in favor of a PANDAS dx. Because the immune system makes antibodies when it is exposed to pathogens to prevent infection, it indicates his reaction is caused by antibodies, not infection, which is the case w/ PANDAS. We call that "canary" effect.

 

 

i just am sooo frusterated right now because his dr. just assumed his throat culture was going to be positive and give him some meds and move on. i know in the post above i was asked how he reacted on antibiotics. well from watching when he is sick being on amoxicillion does help. last few times he did have strep his dr gave him augmeton and i didn't notice a change in tics. i did tell her last time he had strep that i was noticing alot of things that were making me think the strep and throat infections were making him tic more. she then mentions PANDAS so about 4 wks ago when his brother had strep and it was confirmed by dr i called her that following week and told her that his tics had gotten really bad and she then told me that it was a possibility he had PANDAS being he was being affected by brothers strep. that is when we went to get throat culture and it was negative and that is where it stopped. the 5yr old is still crying with throat hurting but does have really bad allergies so dr said throat is prob raw from drainage. well with his tics getting worse and a new one started yesterday (head popping) i feel like calling her and making an appt again and saying look here is what is going on can we treat the 5yr old for his throat and do blood work on the 9yr old.

 

i just get tired of them saying ok well no it isn't tourettes, but he fits that discription as far as just vocal tics and motor tics not the really bad things you see on tv. then they say yes it is a mild tic disorder but could be tourettes. i am like look somebody help me and please help him. then the pandas thing was brought up and no one has done blood work yet. i just hate seeing him get upset because he can't make it stop and i know they say not to bring to his attention because if you correct them it makes it worse but it is soooo annoying (vocal humming/ mummbling) no the head popping. i feel sooo bad for him.

Hi there,

I am sorry for what you are going through. Do not despair! I would go back to the pediatrician and ask her if she can put your son on antibiotics, even if he does have a negative swab. If she is the one that brought up PANDAS, she might be willing to give it a try. Ask for something stronger than Amoxicillin, as it has been shown to fail in clearing strep. Ask her to give him the strongest she can give you. And ask her to run bloodwork for strep titers.

Also try the ibuprofen and see how he reacts.

Next thing I would recommend you get everyone in the family tested. I know this seems extreme, but I wish someone had told me this a year ago when my son was diagnosed. PANDAS kids react to others around them having strep, and if you don't clear the family, then your child will keep having symptoms. Also, keep in mind that strep is not the only trigger (it could be mycoplasma, the flu, etc)

Keep a journal of symptoms, what makes the better/worse, other family members being sick, etc., as it may be very useful in making a diagnosis.

If you can, make an appointment with a PANDAS specialist, some of them do phone consultations.

Keep asking any questions you may have and hang in there. It is tough when you run into doctors that don't know this disease! Hope you find someone helpful in your area.

Isabel

Edited by mati's mom
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Hi Kam,

My son(7) was diagnosed with PANDAS a year ago. He has and has had some very similar symptoms to yours. When he first started ticcing (btw he always had an on again/off again eye blinking tic) last year it was a throat sound, we called it his 'fake laugh' while I was trying to figure out what it was. Sounded like throat clearing or "hmmph' if his mouth was closed. Other 'above the neck' tics that have come and gone are grimacing with a chin jut that i call his 'stevie wonder' (must keep up the humour or i fall apart), lip sucking, various other mouth noises, a psycho looking grin and looking far to one side without moving his head.

He has been on ammox every day since diagnosed, which is not an instant fix btw, it is a painfully slow improvement with cyclic exacerbations. We have experienced a lot of the symptoms talked about in this forum (adhd, rage, headaches, insomnia, encopresis, hyper-sensory (taste, touch), anxiety, etc) but to a lesser degree than most and so are not a candidate for IVIG. His mild syptoms have always puzzled me as his strep titer when first diagnosed was 700-800, according to our ped the highest he's ever seen. Our peds criteria for even entertaining the possibility of PANDAS (he's a firm believer) is that there must be a tic first (usually head region) and then he will confirm with an elevated strep titer. The child does not need to test pos for (and often doesn't have) strep. The post from peg about PANDAS kids being 'canaries' is dead on. I could tell my son's teacher there was strep in the class before she knew of it. He is very sensitive to being around carriers.

We are not out of the woods yet, but I feel we are heading in the right direction. I hope this forum helps you, it was a great relief to me to confirm what I was observing. I was also through this forum able to get my son in Dr. Cunningham's much mentioned study and further confirm that he is in the PANDAS range and yes on the low side of average.

Keep reading, keep fighting.

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Hello!

 

I strongly recommend that you consult with a "real" PANDAS expert, so that you can rule PANDAS in or out with some confidence. The fact is most doctors -- even those who are essentially unprejudiced and responsible at heart -- DO NOT CURRENTLY HAVE AN ACCURATE AND UP-TO-DATE UNDERSTANDING OF PANDAS/PITAND! My child suffered for years before we were fortunate enough to be referred to a brilliant adult neurologist, who is a true brain scientist, who really looked at the big picture (as opposed to looking at a measly few minutes in an examining room), and who thereby readily arrived at a PANDAS/PITAND diagnosis. However, when we then consulted our local purported "PANDAS expert" pediatrician, we were dismissed out of hand. It wasn't until we got in to see one of the national PANDAS experts that our brilliant adult neurologist's diagnosis was heartily confirmed, and we were able to move forward with treatment.

 

Keep looking for answers! (And remember, doctors can be wrong sometimes, just like the rest of us!) Good luck!

 

Tenacity

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