How to test For PANDAS

[Tigger013]

Does anyone know if I go to a specialist or regular doctor to test for PANDAS? What tests am I requesting to confirm potential PANDAS? Also, what are the chances of having a child that was diagnosed with only mild Motor Tics at age 7, then at the age of 12 and increase of Motor Tics and newly diagnosed OCD? She has had several different ear, sinus and throat infections over the course of the years and since the summer when the motor tics started to seem to really increase she was on anbx for sinus infection. I did not ever hear of PANDAS until reading Saving Sammy. I want to save my own child, but not sure how. There are days when she is really good, then sometimes at night they might increase dramatically. We are working with a CBT to help change her behaviors to a new tic. Seems to help a little. If anything, she loves the doctor and makes her feel really good about herself. My daughter is very bright and atheletic. Once I rule out PANDAS, we are going to go the supplement way and see if that helps. I am wondering too if because she is 12 years old, that now she is at the peak of ticcing. Maybe this is what typically happens, the heightened behaviors and maybe hopefully will be reducing over the next few years. Any info about types of testing, please let me know Thanks to all of you out there. My heart goes out to all of these beautiful children.

[faith]

hi tigger,

There is no real test for PANDAS, but you can have the ASO and Anti Dnase titers tested thru bloodwork just to see if there is any rise there. that will tell you if infection in the past is a factor, and may give some doctors something to go on to believe that strep is a part of this, and then may give antiboitics more freely.

 

But just curious, as you say she's had tics since 7 and is now 12? has she had recent vaccines, the ones that are common at 11 I think? Tdap, varicella, flu shot?) I strongly believe vaccines can exacerbate symptoms in already suseptable children (those who already may have some tics or ocd).

 

 

Faith

[Lilyma]

Does anyone know if I go to a specialist or regular doctor to test for PANDAS? What tests am I requesting to confirm potential PANDAS? Also, what are the chances of having a child that was diagnosed with only mild Motor Tics at age 7, then at the age of 12 and increase of Motor Tics and newly diagnosed OCD? She has had several different ear, sinus and throat infections over the course of the years and since the summer when the motor tics started to seem to really increase she was on anbx for sinus infection. I did not ever hear of PANDAS until reading Saving Sammy. I want to save my own child, but not sure how. There are days when she is really good, then sometimes at night they might increase dramatically. We are working with a CBT to help change her behaviors to a new tic. Seems to help a little. If anything, she loves the doctor and makes her feel really good about herself. My daughter is very bright and atheletic. Once I rule out PANDAS, we are going to go the supplement way and see if that helps. I am wondering too if because she is 12 years old, that now she is at the peak of ticcing. Maybe this is what typically happens, the heightened behaviors and maybe hopefully will be reducing over the next few years. Any info about types of testing, please let me know Thanks to all of you out there. My heart goes out to all of these beautiful children.

 

Hi Tigger,

After reading your post, I feel like I am reading my exact story. I have a 15 year old and have been dealing with the same issues since he was in 3rd grade. I am just now becoming aware of PANDAS after finishing Saving Sammy. I am calling the pediatric neurologist to start testing for PANDAS and I have no idea where to start either. I have read all the posts in this forum on parents new to PANDAS. On Monday, I plan on asking the doctor to run blood test for Strep and go from there (any other recommendations from the doctor or from people on this forum will be run also.) The 1st step in my plan is to see if strep shows up in the test and to see what his titers are. If strep does show up and low titers, I will come back to this forum and read what the next test is that I should be asking for. I am SO OVERWHELMED and feel lost because I don't know enough about this as far as being able to ask the doctors to test for what I want. I have a son who is suffering severely while trying to succeed in school and continue on with his sports team that he has invested everything in. Please keep posting and let me know the steps you are taking. I am recording every bit of information I get from here as to know what steps to take, keep taking, etc. There are so many other things I have just discovered that could be at the root of the tics, OCD, learning difficulties, etc., it is hard to even believe. Glad you posted. Our children have even had the same ilnesses. I have currently started supplements, so far haven't seen a huge difference, but I was supplementing based on a diagnoses of Tourette's/tic disorder and someone had pointed out that the supplements may not help if the cause of the symptoms are from a Pandas infection...makes so much sense! So here I go. I've been down every path except the Pandas, so please let me know if I can help in anyway. You have helped me just knowing our stories are so similar. Hang in there. Our kids and all the other kids that have to bear this awful burden on their sweet shoulders will get through it. We will make sure of it.

[Lilyma]

hi tigger,

There is no real test for PANDAS, but you can have the ASO and Anti Dnase titers tested thru bloodwork just to see if there is any rise there. that will tell you if infection in the past is a factor, and may give some doctors something to go on to believe that strep is a part of this, and then may give antiboitics more freely.

 

But just curious, as you say she's had tics since 7 and is now 12? has she had recent vaccines, the ones that are common at 11 I think? Tdap, varicella, flu shot?) I strongly believe vaccines can exacerbate symptoms in already suseptable children (those who already may have some tics or ocd).

 

 

Faith

 

Hi Faith,

Thank you for you helpful information. My story is so similar to Tigger's. I will ask the doctor Monday for the test you just informed about. As far as vaccines, I have had my son vaccinated every year for the flu and this year along with the flu (on the same day), the H1N1. Now that I look back and think about it, his tic got so severe, he was in pain, I almost had to take him to the hospital. I do believe it had a huge affect on him. I will not vacinnate for flu anymore and he is done with standard immunizations for awhile, but I definitely think it exacerbated his symptoms. Just another piece of the puzzle I am trying to fit in. I never would have linked that to his symptoms untill I read this forum. Thank you, thank you, thank you.

Lilyma

[Tigger013]

Does anyone know if I go to a specialist or regular doctor to test for PANDAS? What tests am I requesting to confirm potential PANDAS? Also, what are the chances of having a child that was diagnosed with only mild Motor Tics at age 7, then at the age of 12 and increase of Motor Tics and newly diagnosed OCD? She has had several different ear, sinus and throat infections over the course of the years and since the summer when the motor tics started to seem to really increase she was on anbx for sinus infection. I did not ever hear of PANDAS until reading Saving Sammy. I want to save my own child, but not sure how. There are days when she is really good, then sometimes at night they might increase dramatically. We are working with a CBT to help change her behaviors to a new tic. Seems to help a little. If anything, she loves the doctor and makes her feel really good about herself. My daughter is very bright and atheletic. Once I rule out PANDAS, we are going to go the supplement way and see if that helps. I am wondering too if because she is 12 years old, that now she is at the peak of ticcing. Maybe this is what typically happens, the heightened behaviors and maybe hopefully will be reducing over the next few years. Any info about types of testing, please let me know Thanks to all of you out there. My heart goes out to all of these beautiful children.

 

Hi Tigger,

After reading your post, I feel like I am reading my exact story. I have a 15 year old and have been dealing with the same issues since he was in 3rd grade. I am just now becoming aware of PANDAS after finishing Saving Sammy. I am calling the pediatric neurologist to start testing for PANDAS and I have no idea where to start either. I have read all the posts in this forum on parents new to PANDAS. On Monday, I plan on asking the doctor to run blood test for Strep and go from there (any other recommendations from the doctor or from people on this forum will be run also.) The 1st step in my plan is to see if strep shows up in the test and to see what his titers are. If strep does show up and low titers, I will come back to this forum and read what the next test is that I should be asking for. I am SO OVERWHELMED and feel lost because I don't know enough about this as far as being able to ask the doctors to test for what I want. I have a son who is suffering severely while trying to succeed in school and continue on with his sports team that he has invested everything in. Please keep posting and let me know the steps you are taking. I am recording every bit of information I get from here as to know what steps to take, keep taking, etc. There are so many other things I have just discovered that could be at the root of the tics, OCD, learning difficulties, etc., it is hard to even believe. Glad you posted. Our children have even had the same ilnesses. I have currently started supplements, so far haven't seen a huge difference, but I was supplementing based on a diagnoses of Tourette's/tic disorder and someone had pointed out that the supplements may not help if the cause of the symptoms are from a Pandas infection...makes so much sense! So here I go. I've been down every path except the Pandas, so please let me know if I can help in anyway. You have helped me just knowing our stories are so similar. Hang in there. Our kids and all the other kids that have to bear this awful burden on their sweet shoulders will get through it. We will make sure of it.

 

 

Hi,

 

Thanks for responding. I feel at a loss sometimes for my daughter. I thank God everyday that she is so strong and as confident as one could be. Seeing her interact at sports and being a leader makes me so proud of her overcoming some of these emotional difficulties. I just wonder how are these poor children able to wake up everyday and deal with this? They are true fighters:) As far as your response, are you saying that your son does not have full TS, but Chronic Motor Tic and OCD like my daughter? I know there are variances of these, but all I read is about TS more so than just motor tics. She never has had to vocal part. I assume the same treatment? There has to be better information out there than I can find. My daughter has never had any flu vaccinations. I never thought they were really necessary, maybe because I never had them and we are all generally really healthy people. This latest one, I chose not to do it because I saw that one cheerleader (either Pro or college level) end up getting a movement disorder because of the flu vaccination. Ugh Scared the begeebees out of me. Normally I would say, yeah, get the flu if you think you would benefit. No more. I cannot bare the idea that I could cause more harm than already suffering from. Anyway, all of her routine vaccinations have always been administered. Unfortunately, never did I connect the dots to when this started and what happened before it started. I wish I would have known to make some connections then. A little too late for the past. I have brought her to two different neurologist (pediatric) at Children's Memorial, in Chicago. First one at 8yrs old, then diagnosed with motor tics. They were very mild, therefore no treatment needed. They did change a lot, most people did not see what she was doing. As of this past summer is when it seemed to really be more expressed. Probably because some of the movements involve her eyes, hands to face and neck. The 2nd Dr said also motor tic, but some OCD. She counts in her head a certain number of times, or does a motion or touches something. Nothing yet too horrible, but still enough. We are working on training herself to be the BOSS and tell her if her body says to do it 3 x's to say no only 2 x's. This will be a process, but she is so willing to challenge herself. What is so weird, is when she is involved with sports, she is a normal girl. No signs of anything. Now if we are sitting quietly in church, we must sit in the back row and remind her to relax and breathe. This really helps her to get a grip. We just took her to a neuro-psyc doctor. He was wonderful. He took two test to rule out any motor or attention deficit issues, which she passed as expected. But also, he talked to her clearly and had her describe what she is doing, how she does it, etc. I was really impressed. He is the one to suggest PANDAS testing (blood work and throat culture). So we are at this stage now. Hopefully we can get in there soon for that testing. I am relieved, because my regular pediatrician would not help in that area of blood testing. Said you cannot find out anything from that?? So is the blood work something different and is it more costly? If you find out about your blood work/strep test, keep me posted too. Good luck and have a good weekend.

[Buster]

Take a quick look through the flowchart at:

 

http://www.latitudes.org/forums/index.php?showtopic=6688

 

and the overview document/FAQ sheets at:

http://www.latitudes.org/forums/index.php?showtopic=6265

 

and

http://www.latitudes.org/forums/index.php?showtopic=6266

 

Best regards,

 

Buster

 

 

 

Does anyone know if I go to a specialist or regular doctor to test for PANDAS? What tests am I requesting to confirm potential PANDAS? Also, what are the chances of having a child that was diagnosed with only mild Motor Tics at age 7, then at the age of 12 and increase of Motor Tics and newly diagnosed OCD? She has had several different ear, sinus and throat infections over the course of the years and since the summer when the motor tics started to seem to really increase she was on anbx for sinus infection. I did not ever hear of PANDAS until reading Saving Sammy. I want to save my own child, but not sure how. There are days when she is really good, then sometimes at night they might increase dramatically. We are working with a CBT to help change her behaviors to a new tic. Seems to help a little. If anything, she loves the doctor and makes her feel really good about herself. My daughter is very bright and atheletic. Once I rule out PANDAS, we are going to go the supplement way and see if that helps. I am wondering too if because she is 12 years old, that now she is at the peak of ticcing. Maybe this is what typically happens, the heightened behaviors and maybe hopefully will be reducing over the next few years. Any info about types of testing, please let me know Thanks to all of you out there. My heart goes out to all of these beautiful children.

[Tigger013]

Take a quick look through the flowchart at:

 

http://www.latitudes.org/forums/index.php?showtopic=6688

 

and the overview document/FAQ sheets at:

http://www.latitudes.org/forums/index.php?showtopic=6265

 

and

http://www.latitudes.org/forums/index.php?showtopic=6266

 

Best regards,

 

Buster

 

 

 

Does anyone know if I go to a specialist or regular doctor to test for PANDAS? What tests am I requesting to confirm potential PANDAS? Also, what are the chances of having a child that was diagnosed with only mild Motor Tics at age 7, then at the age of 12 and increase of Motor Tics and newly diagnosed OCD? She has had several different ear, sinus and throat infections over the course of the years and since the summer when the motor tics started to seem to really increase she was on anbx for sinus infection. I did not ever hear of PANDAS until reading Saving Sammy. I want to save my own child, but not sure how. There are days when she is really good, then sometimes at night they might increase dramatically. We are working with a CBT to help change her behaviors to a new tic. Seems to help a little. If anything, she loves the doctor and makes her feel really good about herself. My daughter is very bright and atheletic. Once I rule out PANDAS, we are going to go the supplement way and see if that helps. I am wondering too if because she is 12 years old, that now she is at the peak of ticcing. Maybe this is what typically happens, the heightened behaviors and maybe hopefully will be reducing over the next few years. Any info about types of testing, please let me know Thanks to all of you out there. My heart goes out to all of these beautiful children.

 

 

Wow, thank you for all that information. I will bring it to my doctor and let him know these facts-very beneficial to help my child. Also, I still am very skeptical about PANDAS for my child, only because it seems that PANDAS patients have a huge motor tic and OCD issues. Looking at the symptoms, my child fits only a very few. Still keeping the door open and will get the testing. Did you say that the blood work is a specific test? Would I need to know what test it is called so to verify that my doctor will be giving me the correct one? Same goes for the throat culture. I would assume my child does not have strep now, because she has been really healthy for quite some time. Perplexing information and will continue to follow the threads. THANKS:)

[Tigger013]

Does anyone know if I go to a specialist or regular doctor to test for PANDAS? What tests am I requesting to confirm potential PANDAS? Also, what are the chances of having a child that was diagnosed with only mild Motor Tics at age 7, then at the age of 12 and increase of Motor Tics and newly diagnosed OCD? She has had several different ear, sinus and throat infections over the course of the years and since the summer when the motor tics started to seem to really increase she was on anbx for sinus infection. I did not ever hear of PANDAS until reading Saving Sammy. I want to save my own child, but not sure how. There are days when she is really good, then sometimes at night they might increase dramatically. We are working with a CBT to help change her behaviors to a new tic. Seems to help a little. If anything, she loves the doctor and makes her feel really good about herself. My daughter is very bright and atheletic. Once I rule out PANDAS, we are going to go the supplement way and see if that helps. I am wondering too if because she is 12 years old, that now she is at the peak of ticcing. Maybe this is what typically happens, the heightened behaviors and maybe hopefully will be reducing over the next few years. Any info about types of testing, please let me know Thanks to all of you out there. My heart goes out to all of these beautiful children.

 

Hi Tigger,

After reading your post, I feel like I am reading my exact story. I have a 15 year old and have been dealing with the same issues since he was in 3rd grade. I am just now becoming aware of PANDAS after finishing Saving Sammy. I am calling the pediatric neurologist to start testing for PANDAS and I have no idea where to start either. I have read all the posts in this forum on parents new to PANDAS. On Monday, I plan on asking the doctor to run blood test for Strep and go from there (any other recommendations from the doctor or from people on this forum will be run also.) The 1st step in my plan is to see if strep shows up in the test and to see what his titers are. If strep does show up and low titers, I will come back to this forum and read what the next test is that I should be asking for. I am SO OVERWHELMED and feel lost because I don't know enough about this as far as being able to ask the doctors to test for what I want. I have a son who is suffering severely while trying to succeed in school and continue on with his sports team that he has invested everything in. Please keep posting and let me know the steps you are taking. I am recording every bit of information I get from here as to know what steps to take, keep taking, etc. There are so many other things I have just discovered that could be at the root of the tics, OCD, learning difficulties, etc., it is hard to even believe. Glad you posted. Our children have even had the same ilnesses. I have currently started supplements, so far haven't seen a huge difference, but I was supplementing based on a diagnoses of Tourette's/tic disorder and someone had pointed out that the supplements may not help if the cause of the symptoms are from a Pandas infection...makes so much sense! So here I go. I've been down every path except the Pandas, so please let me know if I can help in anyway. You have helped me just knowing our stories are so similar. Hang in there. Our kids and all the other kids that have to bear this awful burden on their sweet shoulders will get through it. We will make sure of it.

 

 

Please read the reply from Buster on my thread! Wow, what a load of information. Maybe you can send it or copy it to give to your doctor on Monday.

[Tigger013]

hi tigger,

There is no real test for PANDAS, but you can have the ASO and Anti Dnase titers tested thru bloodwork just to see if there is any rise there. that will tell you if infection in the past is a factor, and may give some doctors something to go on to believe that strep is a part of this, and then may give antiboitics more freely.

 

But just curious, as you say she's had tics since 7 and is now 12? has she had recent vaccines, the ones that are common at 11 I think? Tdap, varicella, flu shot?) I strongly believe vaccines can exacerbate symptoms in already suseptable children (those who already may have some tics or ocd).

 

 

Faith

 

Hi Faith,

 

She has always been up to date on her vac's, but never did I identify or can think back what her responses were after the shots. The only thing we never had done, was the flu shots. I wish I new what to look for when all of these shots were given.

 

Thanks

[Buster]

Also, I still am very skeptical about PANDAS for my child, only because it seems that PANDAS patients have a huge motor tic and OCD issues.

Hmm, not exactly. The groups are divided into those with OCD only, those with OCD and tics and those presenting with only tics. In addition, often the tics are vocal (although certainly many have motor tics or motion abnormalties too).

Did you say that the blood work is a specific test?

There certainly are specific blood tests but they only add weight to the PANDAS or PITAND diagnosis, they aren't in and of themselves conclusive. Again, I refer you to the flow chart and the other documents as they are pretty explicit on the tests and the confidence intervals.

[Lilyma]

Also, I still am very skeptical about PANDAS for my child, only because it seems that PANDAS patients have a huge motor tic and OCD issues.

Hmm, not exactly. The groups are divided into those with OCD only, those with OCD and tics and those presenting with only tics. In addition, often the tics are vocal (although certainly many have motor tics or motion abnormalties too).

Did you say that the blood work is a specific test?

There certainly are specific blood tests but they only add weight to the PANDAS or PITAND diagnosis, they aren't in and of themselves conclusive. Again, I refer you to the flow chart and the other documents as they are pretty explicit on the tests and the confidence intervals.

 

I have looked at your flow chart, taking it box by box and trying to decipher it, as it is a wealth of information (thank you truly, I have been researching and learning so much from all your links and information). So, starting with the 1st box, after finding out what GHBAS is, it looks likes the first step is to have the family members throat cultured for Strep. Am I reading this right? My reasoning for wanting to go directly to the the blood test (the one which will show a titer number) is because I don't think any of us will test positive for strep because we are not displaying any symptoms. Neither one of my kids have ever had strep throat to my knowledge. I am worried that tests would come back negative, and paranoid that all offers of further testing would stop there. My sons doctor asked me at his last appointment if I wanted him to prescribe a test that shows the titer, I declined at that moment because I wasn't knowledgeable enough and I wanted to go back to him educated on what he was offering. (He offered this because I asked him about PANDAS and the possibility of that diagnosis, as I was at the VERY BEGINNING of learning of this and trying to connect some dots.) I had read that even the titers show up low and docs may discard the possible PANDAS diagnosis. Am I reading all this right, is my plan to start with the blood test a good one, along with getting everyone throat cultured for strep?

[peglem]

Also, I still am very skeptical about PANDAS for my child, only because it seems that PANDAS patients have a huge motor tic and OCD issues.

Hmm, not exactly. The groups are divided into those with OCD only, those with OCD and tics and those presenting with only tics. In addition, often the tics are vocal (although certainly many have motor tics or motion abnormalties too).

Did you say that the blood work is a specific test?

There certainly are specific blood tests but they only add weight to the PANDAS or PITAND diagnosis, they aren't in and of themselves conclusive. Again, I refer you to the flow chart and the other documents as they are pretty explicit on the tests and the confidence intervals.

 

I have looked at your flow chart, taking it box by box and trying to decipher it, as it is a wealth of information (thank you truly, I have been researching and learning so much from all your links and information). So, starting with the 1st box, after finding out what GHBAS is, it looks likes the first step is to have the family members throat cultured for Strep. Am I reading this right? My reasoning for wanting to go directly to the the blood test (the one which will show a titer number) is because I don't think any of us will test positive for strep because we are not displaying any symptoms. Neither one of my kids have ever had strep throat to my knowledge. I am worried that tests would come back negative, and paranoid that all offers of further testing would stop there. My sons doctor asked me at his last appointment if I wanted him to prescribe a test that shows the titer, I declined at that moment because I wasn't knowledgeable enough and I wanted to go back to him educated on what he was offering. (He offered this because I asked him about PANDAS and the possibility of that diagnosis, as I was at the VERY BEGINNING of learning of this and trying to connect some dots.) I had read that even the titers show up low and docs may discard the possible PANDAS diagnosis. Am I reading all this right, is my plan to start with the blood test a good one, along with getting everyone throat cultured for strep?

Unfortunately, Buster's chart doesn't show how to manage doctors as well! You might want to get the strep testing done at a clinic or urgent care facility and then decide whether to share that info with your doctor. It is not so uncommon for people to culture positive for strep w/o displaying any symptoms. It is also common for those who are positive on strep culture to not get a rise in titers (ASO, AntiDnase). If you get a positive swab, its frequently better to forgo titers testing...you already have confirmation of strep, and the titers testing can only confirm (or affirm) a recent infection (but a low titer does not rule that out). Most doctors do not know how to interpret the titers testing.

[Lilyma]

Does anyone know if I go to a specialist or regular doctor to test for PANDAS? What tests am I requesting to confirm potential PANDAS? Also, what are the chances of having a child that was diagnosed with only mild Motor Tics at age 7, then at the age of 12 and increase of Motor Tics and newly diagnosed OCD? She has had several different ear, sinus and throat infections over the course of the years and since the summer when the motor tics started to seem to really increase she was on anbx for sinus infection. I did not ever hear of PANDAS until reading Saving Sammy. I want to save my own child, but not sure how. There are days when she is really good, then sometimes at night they might increase dramatically. We are working with a CBT to help change her behaviors to a new tic. Seems to help a little. If anything, she loves the doctor and makes her feel really good about herself. My daughter is very bright and atheletic. Once I rule out PANDAS, we are going to go the supplement way and see if that helps. I am wondering too if because she is 12 years old, that now she is at the peak of ticcing. Maybe this is what typically happens, the heightened behaviors and maybe hopefully will be reducing over the next few years. Any info about types of testing, please let me know Thanks to all of you out there. My heart goes out to all of these beautiful children.

 

Hi Tigger,

After reading your post, I feel like I am reading my exact story. I have a 15 year old and have been dealing with the same issues since he was in 3rd grade. I am just now becoming aware of PANDAS after finishing Saving Sammy. I am calling the pediatric neurologist to start testing for PANDAS and I have no idea where to start either. I have read all the posts in this forum on parents new to PANDAS. On Monday, I plan on asking the doctor to run blood test for Strep and go from there (any other recommendations from the doctor or from people on this forum will be run also.) The 1st step in my plan is to see if strep shows up in the test and to see what his titers are. If strep does show up and low titers, I will come back to this forum and read what the next test is that I should be asking for. I am SO OVERWHELMED and feel lost because I don't know enough about this as far as being able to ask the doctors to test for what I want. I have a son who is suffering severely while trying to succeed in school and continue on with his sports team that he has invested everything in. Please keep posting and let me know the steps you are taking. I am recording every bit of information I get from here as to know what steps to take, keep taking, etc. There are so many other things I have just discovered that could be at the root of the tics, OCD, learning difficulties, etc., it is hard to even believe. Glad you posted. Our children have even had the same ilnesses. I have currently started supplements, so far haven't seen a huge difference, but I was supplementing based on a diagnoses of Tourette's/tic disorder and someone had pointed out that the supplements may not help if the cause of the symptoms are from a Pandas infection...makes so much sense! So here I go. I've been down every path except the Pandas, so please let me know if I can help in anyway. You have helped me just knowing our stories are so similar. Hang in there. Our kids and all the other kids that have to bear this awful burden on their sweet shoulders will get through it. We will make sure of it.

 

 

Hi,

 

Thanks for responding. I feel at a loss sometimes for my daughter. I thank God everyday that she is so strong and as confident as one could be. Seeing her interact at sports and being a leader makes me so proud of her overcoming some of these emotional difficulties. I just wonder how are these poor children able to wake up everyday and deal with this? They are true fighters:) As far as your response, are you saying that your son does not have full TS, but Chronic Motor Tic and OCD like my daughter? I know there are variances of these, but all I read is about TS more so than just motor tics. She never has had to vocal part. I assume the same treatment? There has to be better information out there than I can find. My daughter has never had any flu vaccinations. I never thought they were really necessary, maybe because I never had them and we are all generally really healthy people. This latest one, I chose not to do it because I saw that one cheerleader (either Pro or college level) end up getting a movement disorder because of the flu vaccination. Ugh Scared the begeebees out of me. Normally I would say, yeah, get the flu if you think you would benefit. No more. I cannot bare the idea that I could cause more harm than already suffering from. Anyway, all of her routine vaccinations have always been administered. Unfortunately, never did I connect the dots to when this started and what happened before it started. I wish I would have known to make some connections then. A little too late for the past. I have brought her to two different neurologist (pediatric) at Children's Memorial, in Chicago. First one at 8yrs old, then diagnosed with motor tics. They were very mild, therefore no treatment needed. They did change a lot, most people did not see what she was doing. As of this past summer is when it seemed to really be more expressed. Probably because some of the movements involve her eyes, hands to face and neck. The 2nd Dr said also motor tic, but some OCD. She counts in her head a certain number of times, or does a motion or touches something. Nothing yet too horrible, but still enough. We are working on training herself to be the BOSS and tell her if her body says to do it 3 x's to say no only 2 x's. This will be a process, but she is so willing to challenge herself. What is so weird, is when she is involved with sports, she is a normal girl. No signs of anything. Now if we are sitting quietly in church, we must sit in the back row and remind her to relax and breathe. This really helps her to get a grip. We just took her to a neuro-psyc doctor. He was wonderful. He took two test to rule out any motor or attention deficit issues, which she passed as expected. But also, he talked to her clearly and had her describe what she is doing, how she does it, etc. I was really impressed. He is the one to suggest PANDAS testing (blood work and throat culture). So we are at this stage now. Hopefully we can get in there soon for that testing. I am relieved, because my regular pediatrician would not help in that area of blood testing. Said you cannot find out anything from that?? So is the blood work something different and is it more costly? If you find out about your blood work/strep test, keep me posted too. Good luck and have a good weekend.

 

My son has never been officially diagnosed with TS, more of a tic disorder. It's never been a definite diagnosis. He started with throat clearing in third grade which only I noticed. I am a teacher by profession, I picked up on it after a couple of weeks, when the throat clearing became excessive when he would do homework. The vocal tic subsided on its own. By the end of 5th grade he had facial tics, they became severe that summer. He was in pain so we put him on a low dose of Risperdol thinking tic disorder (I guess???, like I said never a definite diagnosis).We needed to manage the tic because of the pain at that point. Anyway, that was

the beginning. From then, tics disappeared for about a year, came off the meds. Tics came back mid 7th grade, along with vocal tics. Back on med, low dose of Abilify, med worked, tic subsided. Off the medication and now in 9th grade both(severe) facial and vocal, some OCD tendencies are present, tried both meds again, no response at all in a decrease in the tics, even on much higher doses. So he is not responding to medications they use for Tourette's or Tic Disorder. At the last doctors visit, I brought up PANDAS and the doc offered to order the titer blood test. I want to find out if he has ever had a strep infection. To my understanding, which may very well be inaccurate, the throat test could come back negative, and with the blood test, the titer number could show up low, but the draw will at least be able to tell me if my son has had strep. My understanding is you can find out something (strep) from the blood test. I could be wrong... please someone offer me the correct information if I am:)

[peglem]

The titers tests, if they come back elevated only indicate that there was a recent strep infection- w/in the last 6 or so months. If titers come back low, it doesn't mean anything, does not rule out recent or current infection...it just means that the immune system has not been generating high numbers of those titers. I know its frustrating that there is not an easy way to get the information you want...there just isn't. These tests can confirm, but not rule out. My daughter had numerous positive rapid strep tests, but no elevated titers...and that is the case with several others on this board. Unfortunately when this happens, doctors frequently rule out PANDAS based on the low titers...

[Lilyma]

The titers tests, if they come back elevated only indicate that there was a recent strep infection- w/in the last 6 or so months. If titers come back low, it doesn't mean anything, does not rule out recent or current infection...it just means that the immune system has not been generating high numbers of those titers. I know its frustrating that there is not an easy way to get the information you want...there just isn't. These tests can confirm, but not rule out. My daughter had numerous positive rapid strep tests, but no elevated titers...and that is the case with several others on this board. Unfortunately when this happens, doctors frequently rule out PANDAS based on the low titers...

 

Is the blood test able to indicate whether the child has ever had strep at any time in their lives, even if the child tests negative or is asymptomatic?