Jump to content
ACN Latitudes Forums

Suspect my 5 yo has Tourette's - please help


Mom04
 Share

Recommended Posts

Thank you everyone for your tips and advice.

 

After spending 2 1/2 hours with the Neurologist last night, they said they are 100% sure he does not have tourette's. They listened to our history and symptoms and performed some physical tests on my son. They said that his behavior isn't really "tics" either. That "tics" are more simple, I guess is the word, and my son uses complex phrases that make sense. I'm probably writing this wrong, but hopefully you get the gyst.

 

So....their diagnosis? Impulse control, hyperactivity and some social anxieties. As I've stated before, Tourette's really didn't seem to fit...at least with the stuff I have been researching on my own. Although I am tremendously relieved, I'm still a bit weary because his actions really seem involuntary. But perhaps that comes along with difficulty with impulse control?

 

They suggested behavioral therapy. I'm not surprised. I will be making some calls today to get him into therapy, but in the meantime, I am keeping our April appt with a different Neurologist just for a 2nd opinion. Incidentally, I brought up PANDAS, and the nurse quickly said "we would never test for strep unless he showed symptoms". Oy vay.

 

If therapy helps, then great. In the meantime, I also plan on taking all your wonderful advice and starting with some supplements and a diet change. I had the opportunity to sit in his classroom this morning, and he was awesome! Nothing like they described, but it could have been because I was there.

 

Laurie

Link to comment
Share on other sites

Hi Laurie

 

glad the appointment went well, tho I dont fully agree with their saying TS tics are "simple"...in fact they are defined as simple and complex tics, motor or vocal, where for example an "uh" sound would be a simple vocal; tics while a string of coprolalia sentences in a mini tirade would be more complex tics. Similar with motor..an eye blink would be simple but a series of eye rolls, blinks etc or walking while twirling or kicking is complex tics

 

this is one of my favorite sites for explaining TS http://www.tourettesyndrome.net

 

it does sound tho like your son doesnt have TS tho do be careful on just accepting the behavioral dx as well....if they are uneducated re PANDAS, they probably are so in terms of what some other "triggers" can do to both the physical and the mental/emotional health !!

 

cognitive behavioral therapy with a gentle therapist is a very beneficial thing so hopefully this will be an added help to your son, while you continue with the diet and check into PANDAS and other possible triggers

 

one thing most of us here have learned the hard way is we often have more background knowledge than the docs do!! we just need their smarts in the medical field to guide us thru all this. That is why it is a rare treasure to actually find a physician who gets it, or is at least willing to educate themselves with an open mind about stuff one brings to them, rather than just to dismiss it from ignorance or unwillingness to think outside of the dusty old medical textbook!

Link to comment
Share on other sites

Ha! I agree! Of course, I'm such a "wuss" and assume the doctor knows best, so I didn't push it like I thought I would. Before the words "Tourettes" and "tics" came into our vocab, we met with a wonderful Psychologist. I'm thinking I'm going to call him again, because, let's face it, therapy can help everyone! I believe he specializes in Child Psychology, so that's a good place to start anyhow.

 

Do you think it was smart that we met with a Neurologist first? (As opposed to a Psychiatrist, which some people recommended?).

 

By the way, after they said my son doesn't really have 'tics', I said to them....well you didn't see or read my whole list yet...and proceded to ramble on and on about the "simple" motor/vocal tics like throat clearing, spitting, eye blinking, etc. They still said, "nope". ??

 

Hi Laurie

 

glad the appointment went well, tho I dont fully agree with their saying TS tics are "simple"...in fact they are defined as simple and complex tics, motor or vocal, where for example an "uh" sound would be a simple vocal; tics while a string of coprolalia sentences in a mini tirade would be more complex tics. Similar with motor..an eye blink would be simple but a series of eye rolls, blinks etc or walking while twirling or kicking is complex tics

 

this is one of my favorite sites for explaining TS http://www.tourettesyndrome.net

 

it does sound tho like your son doesnt have TS tho do be careful on just accepting the behavioral dx as well....if they are uneducated re PANDAS, they probably are so in terms of what some other "triggers" can do to both the physical and the mental/emotional health !!

 

cognitive behavioral therapy with a gentle therapist is a very beneficial thing so hopefully this will be an added help to your son, while you continue with the diet and check into PANDAS and other possible triggers

 

one thing most of us here have learned the hard way is we often have more background knowledge than the docs do!! we just need their smarts in the medical field to guide us thru all this. That is why it is a rare treasure to actually find a physician who gets it, or is at least willing to educate themselves with an open mind about stuff one brings to them, rather than just to dismiss it from ignorance or unwillingness to think outside of the dusty old medical textbook!

Link to comment
Share on other sites

Momo4,

 

Hi. I just wanted to add something that you may or may not want to do. It is only a suggestion, but it may help to get to the bottom of whether or not it is PANDAS much sooner than April when you have the appointment.

 

You could take him to your physician and tell a tiny white lie. Tell them he had a sleepover at his friend's house and that friend had a raging case of strep and now your son has a sore throat. If they say, like many times I had heard, "Well, his throat doesn't look red and it sure doesn't look like strep", you then could reply, "what would be the harm of just doing a strep test? Make a mom fell better, etc... "

 

The reason I suggest parents do this is b/c I know that my children never get any physical symptoms, even with a raging strep infection. If a physician is unwilling to do a completely benign little swab of the throat and it is in the child's best interest it be done, then IMO get it done by whatever means necessary. If you told the physician the situation (strep exposure and now sore throat) and they still refused, you can, as a parent, b/c it is a completely benign test, just insist they do it. I am a nurse and I am pretty sure if you give them that scenario, they will do the test.

 

Good luck. I know how scary and frustrating it is when you are just trying to get some answers to help your child. Hang in there!!

Colleen

Link to comment
Share on other sites

The nurse's statement made me nauseous. Seriously, I am sitting here trembling. My son, or any of my 3 kids, do not get symptoms of strep. OMG. If I brought my son to the office you were at today before I knew he had PANDAS, he'd probably would be institutionalized right now, full with SSRI's, and I would never have my boy back again. It will just get worse if he has an infection and it's not erradicated. He's 5 like your son.

 

That statement alone makes me say that I would not trust that office. Please take him to the ped for a strep test. Please go to that other neurologist. Whether it's the disorders this one said he had, TS, or PANDAS, get a second opinion!

 

Like I said before, get the rapid...that comes back negative, make sure they run a culture....that comes back negative, you can have blood tests doen to see if there was an infection. IF by any chance he has PANDAS, it's actually common not to have symptoms of strep.

 

 

They suggested behavioral therapy. I'm not surprised. I will be making some calls today to get him into therapy, but in the meantime, I am keeping our April appt with a different Neurologist just for a 2nd opinion. Incidentally, I brought up PANDAS, and the nurse quickly said "we would never test for strep unless he showed symptoms". Oy vay.

 

 

Laurie

Link to comment
Share on other sites

I will definitely get him in for a strep test, thanks. And, yes, I'm keeping the April appointment for a 2nd opinion. In the meantime, I phoned a psychologist that we met about a month ago when we first heard from the school. He said he didn't suspect Tourette's either, but told me that we still don't have a diagnosis (which is true). So, he's willing to work with us to first, figure out what is going on, then come up with a "treatment" plan.

 

 

The nurse's statement made me nauseous. Seriously, I am sitting here trembling. My son, or any of my 3 kids, do not get symptoms of strep. OMG. If I brought my son to the office you were at today before I knew he had PANDAS, he'd probably would be institutionalized right now, full with SSRI's, and I would never have my boy back again. It will just get worse if he has an infection and it's not erradicated. He's 5 like your son.

 

That statement alone makes me say that I would not trust that office. Please take him to the ped for a strep test. Please go to that other neurologist. Whether it's the disorders this one said he had, TS, or PANDAS, get a second opinion!

 

Like I said before, get the rapid...that comes back negative, make sure they run a culture....that comes back negative, you can have blood tests doen to see if there was an infection. IF by any chance he has PANDAS, it's actually common not to have symptoms of strep.

 

 

They suggested behavioral therapy. I'm not surprised. I will be making some calls today to get him into therapy, but in the meantime, I am keeping our April appt with a different Neurologist just for a 2nd opinion. Incidentally, I brought up PANDAS, and the nurse quickly said "we would never test for strep unless he showed symptoms". Oy vay.

 

 

Laurie

Link to comment
Share on other sites

Chemar - and everyone else - you are awesome!! So sweet to be helping and caring for us, whom you don't know. I will definitely keep you all posted. I know how much work goes into being a mom and/or dad, and especially a parent devoted to a beautiful child with special needs (if that's the 'right term').

 

Laurie

 

sounds like you are making good progress in following all the right steps Laurie!

 

I hope you will get lots of insight to help with a diagnosis, and so be able to implement the best treatments and see healing begin

 

keep us posted please :)

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share

×
×
  • Create New...