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We are in the process of trying to figure out what is going on with our son.

He is 6 years old and is having vocal and motor tics. He has had both for some time now and his motor tics have changed 1x since we can remember. But since about spring of this year his motor and vocal tics have been the same with him keeping them but adding new motor tics as time goes on.

 

He has a long history of ear infections. His tonsils and adenoids were removed at 3.5 years and he has only had 1 ear infection since then.

We are taking him to his GP this week to try and get him to agree to run some tests. doing some blood work to check his minural levels and what ever else we can get checked.

Is there any test to check for PANDAS? shoudl I even bring this up with his GP as a possability?

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Welcome to the forum. Yes absolutely bring this up with the GP but don't stop there. Most of us have had to see specialists to help really dig in deep to find what was at the root of our children's symptoms. Some have found strep, mycoplasma, lyme, and many of us a combination of things but the good news is there is a wealth of information on this forum and many parents willing to help. Think in terms of the whole family. Are siblings symptomatic? How about mom and dad? Any exposure to lyme or tick borne disease ever? Tell us where you live and maybe we can help direct you to a good doctor. You really need a physician willing to run all the tests. It is complex but there is help if you can get in with a doctor willing to play detective. Also I would advise you to read, read, read. Look through this forum closely. Many kids have been helped and it seems to start here with the parents. Good luck and ask questions.

Kim

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Welcome to the forum. Yes absolutely bring this up with the GP but don't stop there. Most of us have had to see specialists to help really dig in deep to find what was at the root of our children's symptoms. Some have found strep, mycoplasma, lyme, and many of us a combination of things but the good news is there is a wealth of information on this forum and many parents willing to help. Think in terms of the whole family. Are siblings symptomatic? How about mom and dad? Any exposure to lyme or tick borne disease ever? Tell us where you live and maybe we can help direct you to a good doctor. You really need a physician willing to run all the tests. It is complex but there is help if you can get in with a doctor willing to play detective. Also I would advise you to read, read, read. Look through this forum closely. Many kids have been helped and it seems to start here with the parents. Good luck and ask questions.

Kim

 

Hi Kim

 

Thank you for the reply.

 

I am from Winnipeg, Canada, and getting doctors to do tests can be a challange, but my husband and I are presistant.

We are on the waiting list to see a Nurologist and the wait is usualy about 2 months or more. In the mean time we figured we would take our son to see our GP to have some blood work done just to rule out any defficancy or what eve else might show up in the blood work.

 

There is no family history of TS. Our younger daughter is 4 and she is the complete opposite child as our son. He has never been a shy little guy but we have noticed over time that his seperation anxiety has increased(I am also a SAHM) and he freaks out at times when I or my husband leave him. He had a horrible time adjusting to Kindergaten and his was peeing up to 30-40 times per day from September till December, then in the spring his urniation went away but he started doing motor and vocal tics to replace that.

He is an ok sleeper, he doesn't have a hard time getting to sleep, but only because he is ALWAYS tired. But if he wakes up at 5 to go to the bathroom he will have a hard time getting back to bed.

 

I am pretty sure he has never had any exposure to tics on his body, but I am wondering if mosquito bites should be looked into. Just out of curiosty because of where we live.

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We all can relate to the difficulty in getting a doctor to help but you could start by asking them to just run strep titers, a lyme western blot, and maybe check for mycoplasma pneumonia. Lyme can be tricky. My daughter's western blot via Quest was negative but we followed up with a specialty tick borne disease lab and results were positive. I have never found a tick on my daughter and was shocked when we received her results but she is now responding to treatment. I would suggest looking up Igenex and reading up on there testing. So many of these kids on the forum have turned up positive for lyme and co-infections and parents had been unsuspecting. You really need a good doctor to help with ordering these tests. I am not familiar with your area but if you are willing to travel you may find help here in the states. There may be doctor's in your area and hopefuly others will chime in here to help. Also I think it would be good to contact ILADS, international lyme and associated disease society. They can refer you to a doctor close to you. I am not saying your son has lyme but these doctors are very willing to run blood work for all types of infections and treat them appropriately.

 

 

 

Welcome to the forum. Yes absolutely bring this up with the GP but don't stop there. Most of us have had to see specialists to help really dig in deep to find what was at the root of our children's symptoms. Some have found strep, mycoplasma, lyme, and many of us a combination of things but the good news is there is a wealth of information on this forum and many parents willing to help. Think in terms of the whole family. Are siblings symptomatic? How about mom and dad? Any exposure to lyme or tick borne disease ever? Tell us where you live and maybe we can help direct you to a good doctor. You really need a physician willing to run all the tests. It is complex but there is help if you can get in with a doctor willing to play detective. Also I would advise you to read, read, read. Look through this forum closely. Many kids have been helped and it seems to start here with the parents. Good luck and ask questions.

Kim

 

Hi Kim

 

Thank you for the reply.

 

I am from Winnipeg, Canada, and getting doctors to do tests can be a challange, but my husband and I are presistant.

We are on the waiting list to see a Nurologist and the wait is usualy about 2 months or more. In the mean time we figured we would take our son to see our GP to have some blood work done just to rule out any defficancy or what eve else might show up in the blood work.

 

There is no family history of TS. Our younger daughter is 4 and she is the complete opposite child as our son. He has never been a shy little guy but we have noticed over time that his seperation anxiety has increased(I am also a SAHM) and he freaks out at times when I or my husband leave him. He had a horrible time adjusting to Kindergaten and his was peeing up to 30-40 times per day from September till December, then in the spring his urniation went away but he started doing motor and vocal tics to replace that.

He is an ok sleeper, he doesn't have a hard time getting to sleep, but only because he is ALWAYS tired. But if he wakes up at 5 to go to the bathroom he will have a hard time getting back to bed.

 

I am pretty sure he has never had any exposure to tics on his body, but I am wondering if mosquito bites should be looked into. Just out of curiosty because of where we live.

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Thank you.

I think the key thing is to rule everything out.

We live in an area where ticks are a big problem. We live in the City and I was shocked when my dog had ticks on him from either a walk or our back yard.

I wont be happy with a diagnosis of TS if the doctor doesn't rule everything else out. If everything else has been ruled out I can live with what ever he has.

 

Do you find with PANDAS that things get worse over time? I was just talking with my husband about when we first noticed symptoms and over the past 2 years things have progressivly gotten worse with the motor tics especialy. I don't know if this is normal for TS or PANDAS or both.

 

If anything we can always go see a natural path and pay for private care. Hopefully they can get the tests done that we need.

 

Bridy

 

 

We all can relate to the difficulty in getting a doctor to help but you could start by asking them to just run strep titers, a lyme western blot, and maybe check for mycoplasma pneumonia. Lyme can be tricky. My daughter's western blot via Quest was negative but we followed up with a specialty tick borne disease lab and results were positive. I have never found a tick on my daughter and was shocked when we received her results but she is now responding to treatment. I would suggest looking up Igenex and reading up on there testing. So many of these kids on the forum have turned up positive for lyme and co-infections and parents had been unsuspecting. You really need a good doctor to help with ordering these tests. I am not familiar with your area but if you are willing to travel you may find help here in the states. There may be doctor's in your area and hopefuly others will chime in here to help. Also I think it would be good to contact ILADS, international lyme and associated disease society. They can refer you to a doctor close to you. I am not saying your son has lyme but these doctors are very willing to run blood work for all types of infections and treat them appropriately.

 

 

 

Welcome to the forum. Yes absolutely bring this up with the GP but don't stop there. Most of us have had to see specialists to help really dig in deep to find what was at the root of our children's symptoms. Some have found strep, mycoplasma, lyme, and many of us a combination of things but the good news is there is a wealth of information on this forum and many parents willing to help. Think in terms of the whole family. Are siblings symptomatic? How about mom and dad? Any exposure to lyme or tick borne disease ever? Tell us where you live and maybe we can help direct you to a good doctor. You really need a physician willing to run all the tests. It is complex but there is help if you can get in with a doctor willing to play detective. Also I would advise you to read, read, read. Look through this forum closely. Many kids have been helped and it seems to start here with the parents. Good luck and ask questions.

Kim

 

Hi Kim

 

Thank you for the reply.

 

I am from Winnipeg, Canada, and getting doctors to do tests can be a challange, but my husband and I are presistant.

We are on the waiting list to see a Nurologist and the wait is usualy about 2 months or more. In the mean time we figured we would take our son to see our GP to have some blood work done just to rule out any defficancy or what eve else might show up in the blood work.

 

There is no family history of TS. Our younger daughter is 4 and she is the complete opposite child as our son. He has never been a shy little guy but we have noticed over time that his seperation anxiety has increased(I am also a SAHM) and he freaks out at times when I or my husband leave him. He had a horrible time adjusting to Kindergaten and his was peeing up to 30-40 times per day from September till December, then in the spring his urniation went away but he started doing motor and vocal tics to replace that.

He is an ok sleeper, he doesn't have a hard time getting to sleep, but only because he is ALWAYS tired. But if he wakes up at 5 to go to the bathroom he will have a hard time getting back to bed.

 

I am pretty sure he has never had any exposure to tics on his body, but I am wondering if mosquito bites should be looked into. Just out of curiosty because of where we live.

Edited by Dorian'sMom
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If left untreated yes, symptoms can get worse with time but that does not mean you can not still get him well. I think you are right in saying that the key is finding a doctor to rule everything out. Please do visit the ILADS website and get a doctor referal. If lyme is big in your area I wouldn't rest till its properly ruled out. Even if your son does not have lyme, surely any good lyme doctor will check for strep and other suspect infections known to cause tics and OCD in children. I advise you to start there because it can be so tough to find a doctor who understands infection at this level. These doctors tend to be open minded and well versed with treating the multi-infected patient.

 

 

 

Thank you.

I think the key thing is to rule everything out.

We live in an area where ticks are a big problem. We live in the City and I was shocked when my dog had ticks on him from either a walk or our back yard.

I wont be happy with a diagnosis of TS if the doctor doesn't rule everything else out. If everything else has been ruled out I can live with what ever he has.

 

Do you find with PANDAS that things get worse over time? I was just talking with my husband about when we first noticed symptoms and over the past 2 years things have progressivly gotten worse with the motor tics especialy. I don't know if this is normal for TS or PANDAS or both.

 

If anything we can always go see a natural path and pay for private care. Hopefully they can get the tests done that we need.

 

Bridy

 

 

We all can relate to the difficulty in getting a doctor to help but you could start by asking them to just run strep titers, a lyme western blot, and maybe check for mycoplasma pneumonia. Lyme can be tricky. My daughter's western blot via Quest was negative but we followed up with a specialty tick borne disease lab and results were positive. I have never found a tick on my daughter and was shocked when we received her results but she is now responding to treatment. I would suggest looking up Igenex and reading up on there testing. So many of these kids on the forum have turned up positive for lyme and co-infections and parents had been unsuspecting. You really need a good doctor to help with ordering these tests. I am not familiar with your area but if you are willing to travel you may find help here in the states. There may be doctor's in your area and hopefuly others will chime in here to help. Also I think it would be good to contact ILADS, international lyme and associated disease society. They can refer you to a doctor close to you. I am not saying your son has lyme but these doctors are very willing to run blood work for all types of infections and treat them appropriately.

 

 

 

Welcome to the forum. Yes absolutely bring this up with the GP but don't stop there. Most of us have had to see specialists to help really dig in deep to find what was at the root of our children's symptoms. Some have found strep, mycoplasma, lyme, and many of us a combination of things but the good news is there is a wealth of information on this forum and many parents willing to help. Think in terms of the whole family. Are siblings symptomatic? How about mom and dad? Any exposure to lyme or tick borne disease ever? Tell us where you live and maybe we can help direct you to a good doctor. You really need a physician willing to run all the tests. It is complex but there is help if you can get in with a doctor willing to play detective. Also I would advise you to read, read, read. Look through this forum closely. Many kids have been helped and it seems to start here with the parents. Good luck and ask questions.

Kim

 

Hi Kim

 

Thank you for the reply.

 

I am from Winnipeg, Canada, and getting doctors to do tests can be a challange, but my husband and I are presistant.

We are on the waiting list to see a Nurologist and the wait is usualy about 2 months or more. In the mean time we figured we would take our son to see our GP to have some blood work done just to rule out any defficancy or what eve else might show up in the blood work.

 

There is no family history of TS. Our younger daughter is 4 and she is the complete opposite child as our son. He has never been a shy little guy but we have noticed over time that his seperation anxiety has increased(I am also a SAHM) and he freaks out at times when I or my husband leave him. He had a horrible time adjusting to Kindergaten and his was peeing up to 30-40 times per day from September till December, then in the spring his urniation went away but he started doing motor and vocal tics to replace that.

He is an ok sleeper, he doesn't have a hard time getting to sleep, but only because he is ALWAYS tired. But if he wakes up at 5 to go to the bathroom he will have a hard time getting back to bed.

 

I am pretty sure he has never had any exposure to tics on his body, but I am wondering if mosquito bites should be looked into. Just out of curiosty because of where we live.

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thank you

I am checking out the website right now.

 

One last question for today. Can Lyme disease effect your thinking?

at times my son has hit his head with his hand and said "why am I like this, what is wrong with me" I know his train of thought is effected some how and he even knows it himself.

Also, he doesn't complain about any sort of pain but he is always tired. Is there any way I can ask him if he is in discomfort without putting those thoughts in his head so he just agrees with me.

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Lyme can certainly affect one's thinking. It can cause a variety of neurological issues or psychiatric/emotional issues, and also chronic fatigue and pain.

 

Hopefully a parent can chime in and give you a suggestion regarding how best to get this information from your son. (I'm not a parent, so I'm not going to even guess.)

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It has been my experience with my kids' Lyme treatment that they often forget or do not know to mention symptoms. I would ask him if anything hurts or feels different. My son and my daughter each forget to mention that they were having headaches until it came up when a doctor asked them.they had nothing to gain fro

Making it up. Kids do not know what is "normal" like adults. They don't have our perspective. Also follow your intuition. A parent knows their child better than anybody and his symptoms could be from Lyme disease. I'd test thru igenex and get a lyme doctor to evaluate and try treating for Lyme or bartonella or babesia if suspected. Lyme is a big problem in Canada. We never sAw ticks either- just one on my daughter. Most people never see the tick (or whatever biting insects can give u Lyme).Good luck! If it's Lyme he can fully recover w the right treatment by an ilads doctor.

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I would rec. a throat culture, as well as throat culturing family members to check for strep (carrier-someone who cultures positive w/out symptoms.)

 

 

If lyme is later ruled out (and other tick dz's) and you are trying to decide if it is PANDAS vs. tourettes,

I would encourage you to consider the Cunningham test (good at differentiating Tourettes vs. PANDAS...however Lyme can also test high).

 

btw, I think "momcap" http://www.latitudes.org/forums/index.php?showuser=5703 is from Canada, but I don't know which part.

Edited by EAMom
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thank you for all the information.

I don't even know where to start.

We took him to a P'doc in September because we noticed the ehad twitching along with the vocal tics. The vocal tics have been around for a long time now but when he started with the motor tics we became very concenred.

The P'Doc said ti was TS and told us to contact a child neurolagist through the children's Hostpial. we are at the point of waiting to see one.

We have an appointment to see his GP on Wednesday, but I am not sure what I should even be asking for from him. Should we tell him we want to rule out PANDAS and we didn't want to wait till we saw the neurolagist?

 

we are trying a magnesium supplement(Kids calm) and he has had it for 3 days with no changes. The stuff tastes horrible so I will give it a month and if we see not changes I will stop giving it to him. I also got some HMF probiotics just because.

He has mentioned head pain in the past, but nothing cornic and we never put two and two together. I honestly would NEVER have thought tics were caused by a virus or infection, or lyme disease. I am glad this forum is here. we try so hard not to treat our son diffrently because of his tics but they are getting worse as time goes on.

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