New here.. Tics or PANDAS?

[BlueMustang]

Hi, I just found this forum last night and thought I'd ask for advice.. Sorry I am so long winded!

 

The middle of January, my almost 7 year old DS started doing very large arm movements that he could not control.. Both arms would swing around twice, he'd roll his shoulders and then he'd clap or if he was at the computer desk, he would hit it with his palms.. His face expression was as if someone blew air in his eyes. This kiddo never sits still and I didn't mention it to him much (thinking maybe it was intentional- didn't want to encourage it with attention) but the few times I did ask him, he said his body just did it. I noticed it happened when he was more excited about something like going outside to play or school, when we first arrive somewhere, waiting his turn to play basketball, etc.

 

I started googling about Tourette's and Tics and watching him more closely and was shocked to find out that lots of little movements he does are considered tics.. He constantly wipes the back of his hand on his chin or rubs by bis nose and will pat the front of his hair as if it was sticking up.. He widens his eyes.. I had no idea until I watched him but he rubs his fingers together, likes to smell them, he will move his fingers like he is cracking them.. He used to jerk his head to the side like he was getting the hair out of his eyes but has stopped that.. He had longer hair (covered the top of his ears) but it wasn't in his eyes.. The beginning of this school year (first grade) he started squinting/ blinking with one eye. I asked if it was dry or hurt and it didn't and he passed the school eye exam so I just waited. That stopped in December(so four months total).. He used to rolls his shoulders back .. I haven't noticed any verbal tics although for probably two years now, he likes to blow his nose. Soooo gross.. He doesn't care if snot comes out... It's mostly when he is watching a show or on the computer or in the car. I haven't seen him do it at school when I help in his class. So I tend to think of it as a gross habit.. Makes me crazy! I'm always yelling for him to get a tissue. Those huge arm motions have calmed down some, it's not as dramatic/obvious but still there. They are worse if he doesn't get enough sleep.

 

Anyway, so in my google researching I discovered PANDAS.. His sister tested positive for strep over Christmas break and also had a yucky virus.. He had a fever/same symptoms the day after her and so a prescription was called in.. He finished that around Jan. 5th and those big arm movements started around a week later. But has all those other tics that have been around for at least a year...

 

Also, I took him to the dr a week ago after waking up with a croupy cough and he took two doses or oral steroids.. He had terrible mood swings after that (he is always loud and louder, especially when protesting, he has no quiet button lol) but the dr said to expect that.. I talked to the dr about the tics (which caused DS to tic in front of him) and he said its definitely a tic disorder which will hopefully go away around puberty. I forgot to bring up PANDAS.

 

Last night, he started doing very deep breaths while playing and said he afraid he was going to die. That freaked me out but he could still laugh, talk, coloring was fine..I even put him in the steamy bathroom with no change.. But it stopped just before he fell asleep.. In googling, I found that can be a tic (how I found this board). He did it again this morning but not as often (he didn't mention it at all) and now it has stopped.

 

As a side note, I also think he has some ADD going on..in Kindergarten he was always called a slow poke (not in front of him) because he took forever to complete his work.. This year is the same. He is in a dual Immersion class where half his day is taught in only Spanish (math and Spanish) and so the English half is very fast paced/demanding. He knows how to do it but is often reprimanded for not working quickly/completing work. Homework takes around an hour most days for the same reasons. He turns 7 the end of the month and I will ask his his dr about testing.. i'm not interested in medicating but how to help him stay on task. He has parent/teacher conferences this next week and I'll ask their thoughts.. They asked the beginning of the year about ADD or auditory processing disorder.

 

So.. Thoughts? Do I ask about PANDAS and for testing even though smaller tics have been around? And what test do I ask for?

[Kareninminn]

Hi, I just found this forum last night and thought I'd ask for advice.. Sorry I am so long winded!

 

The middle of January, my almost 7 year old DS started doing very large arm movements that he could not control.. Both arms would swing around twice, he'd roll his shoulders and then he'd clap or if he was at the computer desk, he would hit it with his palms.. His face expression was as if someone blew air in his eyes. This kiddo never sits still and I didn't mention it to him much (thinking maybe it was intentional- didn't want to encourage it with attention) but the few times I did ask him, he said his body just did it. I noticed it happened when he was more excited about something like going outside to play or school, when we first arrive somewhere, waiting his turn to play basketball, etc.

 

I started googling about Tourette's and Tics and watching him more closely and was shocked to find out that lots of little movements he does are considered tics.. He constantly wipes the back of his hand on his chin or rubs by bis nose and will pat the front of his hair as if it was sticking up.. He widens his eyes.. I had no idea until I watched him but he rubs his fingers together, likes to smell them, he will move his fingers like he is cracking them.. He used to jerk his head to the side like he was getting the hair out of his eyes but has stopped that.. He had longer hair (covered the top of his ears) but it wasn't in his eyes.. The beginning of this school year (first grade) he started squinting/ blinking with one eye. I asked if it was dry or hurt and it didn't and he passed the school eye exam so I just waited. That stopped in December(so four months total).. He used to rolls his shoulders back .. I haven't noticed any verbal tics although for probably two years now, he likes to blow his nose. Soooo gross.. He doesn't care if snot comes out... It's mostly when he is watching a show or on the computer or in the car. I haven't seen him do it at school when I help in his class. So I tend to think of it as a gross habit.. Makes me crazy! I'm always yelling for him to get a tissue. Those huge arm motions have calmed down some, it's not as dramatic/obvious but still there. They are worse if he doesn't get enough sleep.

 

Anyway, so in my google researching I discovered PANDAS.. His sister tested positive for strep over Christmas break and also had a yucky virus.. He had a fever/same symptoms the day after her and so a prescription was called in.. He finished that around Jan. 5th and those big arm movements started around a week later. But has all those other tics that have been around for at least a year...

 

Also, I took him to the dr a week ago after waking up with a croupy cough and he took two doses or oral steroids.. He had terrible mood swings after that (he is always loud and louder, especially when protesting, he has no quiet button lol) but the dr said to expect that.. I talked to the dr about the tics (which caused DS to tic in front of him) and he said its definitely a tic disorder which will hopefully go away around puberty. I forgot to bring up PANDAS.

 

Last night, he started doing very deep breaths while playing and said he afraid he was going to die. That freaked me out but he could still laugh, talk, coloring was fine..I even put him in the steamy bathroom with no change.. But it stopped just before he fell asleep.. In googling, I found that can be a tic (how I found this board). He did it again this morning but not as often (he didn't mention it at all) and now it has stopped.

 

As a side note, I also think he has some ADD going on..in Kindergarten he was always called a slow poke (not in front of him) because he took forever to complete his work.. This year is the same. He is in a dual Immersion class where half his day is taught in only Spanish (math and Spanish) and so the English half is very fast paced/demanding. He knows how to do it but is often reprimanded for not working quickly/completing work. Homework takes around an hour most days for the same reasons. He turns 7 the end of the month and I will ask his his dr about testing.. i'm not interested in medicating but how to help him stay on task. He has parent/teacher conferences this next week and I'll ask their thoughts.. They asked the beginning of the year about ADD or auditory processing disorder.

 

So.. Thoughts? Do I ask about PANDAS and for testing even though smaller tics have been around? And what test do I ask for?

 

It sounds more like Tourette's to me, here's a checklist that may help you out.

 

http://www.ocfoundation.org/uploadedfiles/maincontent/find_help/pandas%20fact%20sheet.pdf

[Chemar]

Honestly I would not be so quick to say it is Tourette and not PANDAS, especially with recent strep in his sibling, and similar symptoms of it for him!!!! TS (or other tic disorders) and PANDAS are not mutually exclusive so he really should be checked out by a PANDAS specialist. You may want to also post on our PANDAS board to get more input there.

 

If it is Tourette Syndrome, those steroids for the cough may well have triggered more tics as steroids elevate dopamine, which in turn increases Tourette tics.

 

There are many factors that can cause tics, apart from TS or PANDAS, and so it really does not sound like the doctor who treated him is very clued up about all this.

 

As an aside, please be very cautious about medicating for the ADD as some of those meds can cause tic increases in kids who are TS.

[BlueMustang]

Thanks for the input.. I will post on the PANDAS board.

 

I cringed when I started reading on here that steroids effect tics.. I am guessing that was what the sudden deep breathing he was doing is from.. Maybe? Not knowing is so stressful.. It has lessened quite a bit since Friday.

 

So what do you guys do in cases where steroids are needed? I have four kids and the only time they were able to kick Croup was with two or so doses of steroid.. And do you find that it is just a temporary increase? Does something like an allergy pill effect tics? This is all new for me.

 

What other factors can Tics stem from? It was just his Pediatrician that saw him and said it was a Tic disorder.

 

Thanks for the heads up on the medication for ADD.. I would prefer to approach it non-medication anyway. His teachers seemed to be willing to help if needed, sitting him closer to the teacher, doing things like tapping his shoulder to remind him to stay on task.. But for now, he is doing poorly in that he doesn't stay focused. It's frustrating at home too.

 

Do you know, is there one Dr that can help me with all this? Like a Neurologist? Or someone else?

 

Thanks again for your help.

[Chemar]

If you are looking for a more natural approach rather than just medicating, an Integrative or Environmental doctor is a good choice.

 

I would suggest you look at our pinned Helpful Threads to get some more info on the many things that can cause tics http://www.latitudes.org/forums/index.php?showtopic=2459

 

Our admin, Sheila Rogers, also has a helpful book http://www.latitudes.org/book.html

 

re the steroids...it is only tics related to Tourette Syndrome that may get worse on steroids due to the dopaminergic trigger. We were warned early on never to give my son steroids so never have.

Some allergy meds can be tic triggers too

You may want to take a look at this survey on tic triggers (scroll down the article for the list) http://www.latitudes.org/articles/finding_triggers.htm

[TxPANDAMom]

Hi, I just found this forum last night and thought I'd ask for advice.. Sorry I am so long winded!

 

The middle of January, my almost 7 year old DS started doing very large arm movements that he could not control.. Both arms would swing around twice, he'd roll his shoulders and then he'd clap or if he was at the computer desk, he would hit it with his palms.. His face expression was as if someone blew air in his eyes. This kiddo never sits still and I didn't mention it to him much (thinking maybe it was intentional- didn't want to encourage it with attention) but the few times I did ask him, he said his body just did it. I noticed it happened when he was more excited about something like going outside to play or school, when we first arrive somewhere, waiting his turn to play basketball, etc.

 

I started googling about Tourette's and Tics and watching him more closely and was shocked to find out that lots of little movements he does are considered tics.. He constantly wipes the back of his hand on his chin or rubs by bis nose and will pat the front of his hair as if it was sticking up.. He widens his eyes.. I had no idea until I watched him but he rubs his fingers together, likes to smell them, he will move his fingers like he is cracking them.. He used to jerk his head to the side like he was getting the hair out of his eyes but has stopped that.. He had longer hair (covered the top of his ears) but it wasn't in his eyes.. The beginning of this school year (first grade) he started squinting/ blinking with one eye. I asked if it was dry or hurt and it didn't and he passed the school eye exam so I just waited. That stopped in December(so four months total).. He used to rolls his shoulders back .. I haven't noticed any verbal tics although for probably two years now, he likes to blow his nose. Soooo gross.. He doesn't care if snot comes out... It's mostly when he is watching a show or on the computer or in the car. I haven't seen him do it at school when I help in his class. So I tend to think of it as a gross habit.. Makes me crazy! I'm always yelling for him to get a tissue. Those huge arm motions have calmed down some, it's not as dramatic/obvious but still there. They are worse if he doesn't get enough sleep.

 

Anyway, so in my google researching I discovered PANDAS.. His sister tested positive for strep over Christmas break and also had a yucky virus.. He had a fever/same symptoms the day after her and so a prescription was called in.. He finished that around Jan. 5th and those big arm movements started around a week later. But has all those other tics that have been around for at least a year...

 

Also, I took him to the dr a week ago after waking up with a croupy cough and he took two doses or oral steroids.. He had terrible mood swings after that (he is always loud and louder, especially when protesting, he has no quiet button lol) but the dr said to expect that.. I talked to the dr about the tics (which caused DS to tic in front of him) and he said its definitely a tic disorder which will hopefully go away around puberty. I forgot to bring up PANDAS.

 

Last night, he started doing very deep breaths while playing and said he afraid he was going to die. That freaked me out but he could still laugh, talk, coloring was fine..I even put him in the steamy bathroom with no change.. But it stopped just before he fell asleep.. In googling, I found that can be a tic (how I found this board). He did it again this morning but not as often (he didn't mention it at all) and now it has stopped.

 

As a side note, I also think he has some ADD going on..in Kindergarten he was always called a slow poke (not in front of him) because he took forever to complete his work.. This year is the same. He is in a dual Immersion class where half his day is taught in only Spanish (math and Spanish) and so the English half is very fast paced/demanding. He knows how to do it but is often reprimanded for not working quickly/completing work. Homework takes around an hour most days for the same reasons. He turns 7 the end of the month and I will ask his his dr about testing.. i'm not interested in medicating but how to help him stay on task. He has parent/teacher conferences this next week and I'll ask their thoughts.. They asked the beginning of the year about ADD or auditory processing disorder.

 

So.. Thoughts? Do I ask about PANDAS and for testing even though smaller tics have been around? And what test do I ask for?

If you believe you may have PANDAS, I would find a PANDAS dr. to do the testing...speaking from experience - Dr.s that aren't familiar with PANDAS (which seems to be the majority) will dismiss the idea of PANDAS all together. Dr. M. Kovascevik in Illinois will even do phone conferencing if necessary to help determine if it may be PANDAS. We went a full year of doctors in the Houston medical center without a diagnosis...from neurologist to psychologists and then some...We have had the tics, as well as OCD, hypersensitivity, focus issues (which you may be seeing - my daughter went from a 4.0 in school to not being able to read a book or watch a 30 minute tv program), anxiety and depression (which you may also be seeing - my daughter talked of dieing several times...)we also had balance issues, voice regression and changes in speech pattern. I would get it checked out from someone who knows PANDAS..it might be as simple as using the antibiotics to get results....don't be afraid to let them try the antibiotics...if you can get it early enough, i have heard that can clear up all the symptoms for some kids...if not, there are other treatments that are seeing positive results...Sorry - I am long winded too...BUT - See a PANDAS specialist!!!! Edited February 27, 2013 by TxPANDAMom

[Chemar]

If there is a chance of there possibly being TS, with or without PANDAS, it is IMHO very risky for anyone , nomatter how qualified, to try to diagnose PANDAS by phone! My personal suggestion would be to see a PANDAS specialist in person, with your child present for a complete evaluation.

 

Some of the treatments for PANDAS eg steroids can be detrimental to people who have T, as discussed above

[TxPANDAMom]

If there is a chance of there possibly being TS, with or without PANDAS, it is IMHO very risky for anyone , nomatter how qualified, to try to diagnose PANDAS by phone! My personal suggestion would be to see a PANDAS specialist in person, with your child present for a complete evaluation.

 

Some of the treatments for PANDAS eg steroids can be detrimental to people who have T, as discussed above

The diagnosis by phone is after he has you do blood tests locally and has the results...He spends approximately 1 hour on the phone with you - sometimes more than one phone call - which is more time than you will get with most doctors in person. Tics were a major symptom for us ...

however - we never had to take any type of tic or seizure medication...in fact - the antibiotic was the main drug used to get the tics and about 15 other symptoms under control...like I said - PANDAS doctors are not easy to find and appointments can be 6 to 8 months out...I still feel Dr.K is worth talking to...

[BlueMustang]

I am still trying to find a Dr in Utah that is familiar with PANDAS..

 

I know for certain that his sudden big dual arm movements were a week after he finished this strep antibiotic in Jan.. I took a video when the large ones first started if anyone wanted to see, I put it as private YouTube (PM me). It's now a much less dual arm movement and usually when he is excited or stressed. You should have seen him on his birthday this past week, he was so excited, he was ticking like crazy.

 

He definitely has had smaller tics for at least a year if not more though and does those all through out the day.. Pats his hair, rubs his hand on his chin, rubs his fingers or cracks knuckles (looks like he is milking a cow), rolls shoulders, face changes.. And since he had croup a few weeks ago and was given two doses of an oral steroid, I know that effects him negatively.

 

Maybe his normal dr would at least do the rapid/48hr strep test to see if that shows anything?