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Undiagnosed and confused about Tics


Mom04
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Hi all - I am still waiting for an appointment for my 5 year old son to determine what sydrome, if any he has. His school is concerned that he is showing signs of Tourette's. The only knowledge I have of Tourette's is my own research on-line for the past 2 weeks. Although it seems obvious that he has certain vocal and motor tics, I'm just not convinced yet that they stem from Tourette's (the main reason being there is not one person in my immediate family, or family history with any neurological disorder).

 

I am not asking for a diagnosis - obviously I'll wait for the professionals. However, I was wondering if anyone might offer their opinion about the following tics that he displays:

 

fake belching

clearing throat - but only when excited, so to me it seems appropriate?

spitting

licking things (that shouldn't be licked, like signs, windows, etc)

gulping loudly when drinking

throwing any object he gets his hands on (toys, pencils, blankets, pillows)

Hitting without being provoked

using inappropriate phrase in school and at home - these phrase always include the word "butt", like "your butt smells"

jumping up and down when excited and pounds chest

getting on all fours, and "bucking" back one leg like a donkey almost

loud screams out of nowhere....usually right up in someone's ear

making silly faces - sticking tongue out, smooshing face with hands, sticking fingers in mouth and streching his cheeks out

 

Besides the physical tics, I am also concerned with his extreme sensitivity - cries and yells the minute parents try to talk about what's "going on" or give him rules; cries during any transition....not just coming and going transition, but like telling him he has to brush his teeth, for instance, before bed.

slamming doors

interrupting conversations and getting exasperated if you don't respond to him immediately.

 

Thank you so much if you respond - my husband and I are just so distraught right now and want to help him in any way we can. It's tough right now not knowing and we feel like we are in limbo and aren't sure how to react (or not react) - waiting for our appointment feels like FOREVER!

 

Thanks again in advance for your opinion/advice.

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hi Mom04 welcome Im pretty new here myself so cetainly no expert,but I can certainly empathize its very scary to see your child going through these things. My daughter is also 5,her major onset began the day of her 5th birthday. I know the first couple docs we saw were way off on any diagnonsis and even with one of tic disorder and add-pediatric neuro said seems like ts but hed have to see symptoms for a year,he obviously didnt read her records. Anyway my point is youll learn alot on this forum that may lessen the faith of any diagnosis you may get--including the potential for improving his condition without meds. I feel alot better just knowing that there is so much help and just general understanding available here. So do you think your soon has shown any symptoms in the past? I know once I started reading more I began to realize so many things I just thought of as "Quirky" were tics. Does he have any sensory issues-seams or tags in clothing drive him nuts? Did he have vaccines right before onset? well I dont know if ive helped any, if not Im sure someone here will soon. Good luck.

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Thank you, Kengela - yes, he has been acting this way for well over a year...maybe even longer...with the exception of new thinkgs like the spitting and licking. It seems to be getting worse and more frequent, but I think that is because he just started school this year and the daily excitement and/or anxiety is probably prompting this.

 

I can't remember when this started....it seems like he's been this way forever, and like you said, we just thought it was his personality. He doesn't get sick often, but I can remember the last time he had a very high fever, they gave him a strong shot (not sure what it was) because he doesn't take medicine. Thing that could have something to do with it?

 

Also...and ths is very shocking....I just read on here that Lyme disease can cause tics???? He doesn't have it, as far as I know, but I think that may be worth getting tested because his dad had a BAD bout this summer and was actually out of work for a while. We think he got bit in our yard.

 

Thanks again for your words.

 

hi Mom04 welcome Im pretty new here myself so cetainly no expert,but I can certainly empathize its very scary to see your child going through these things. My daughter is also 5,her major onset began the day of her 5th birthday. I know the first couple docs we saw were way off on any diagnonsis and even with one of tic disorder and add-pediatric neuro said seems like ts but hed have to see symptoms for a year,he obviously didnt read her records. Anyway my point is youll learn alot on this forum that may lessen the faith of any diagnosis you may get--including the potential for improving his condition without meds. I feel alot better just knowing that there is so much help and just general understanding available here. So do you think your soon has shown any symptoms in the past? I know once I started reading more I began to realize so many things I just thought of as "Quirky" were tics. Does he have any sensory issues-seams or tags in clothing drive him nuts? Did he have vaccines right before onset? well I dont know if ive helped any, if not Im sure someone here will soon. Good luck.
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Hi Mom04,

 

I saw your mention of lyme and wanted to post because I am one of the parents here whose child has/had lyme disease (there are other parents that post on this board and the PANDAS board). Yes indeed, lyme can most definitely cause tics and OCD behaviors as well. For many years I haven taken my daughter to a pediatric lyme specialist, and he has always confirmed that this is not at all uncommon in lyme kids. I think given the fact that your husband has had it (and possibly from your yard!) that you might consider getting your son tested. Although you may know that blood tests are not definitive, and so you need a knowledgeable doctor to make a clinical diagnosis. Long term antibiotics will treat the lyme, and the tic/ocd behaviors usually fade mostly away.

 

There are many wonderful people on this board who have incredibly helpful information to share. I would also recommend that you consider what other environmental cause may contribute to his behavior, such as food or enviro allergies. I have another daughter who has food allergies, and I know from expererience that these can trigger many of the behaviors you have described as well. Please consider reading Sheila Rogers book:

http://www.latitudes.org/book.html

 

Best of luck.

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Hi and welcome

 

I am glad you are going to see a physician for a diagnosis but want to caution you that they frequently dx anything involving tics as TS, when it often is something else!!

 

as you have no family history, I would definitely advise exploring the many other possibilities

 

the mention of Lyme set off a big alarm as yes, Lyme disease can produce the symptoms you have seen.

It also seems it may be passed to others from close personal contact, as a family at our church discovered!

 

I would suggest having Lyme tests asap, as well as checking for strep (not just a rapid throat test, but a full culture as well as blood tests to check for strep antibodies)

 

as you read here more, you will find so many other things that can cause tics apart from Tourette

here are some helpful threads to get you started

http://www.latitudes.org/forums/index.php?showtopic=2459

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Thank you, thank you! The more information I gather....the more I'll have to get him a proper diagnosis. His Neurological appt is in April (boo!), but the DR first suggested a psychiatric screening. Just doesn't seem to fit with our family history, so I will definitely be reading up more on other causes.

 

As for Lyme....is it possible he got it without the initial signs, like high fever, aches and pains and the rash? Because I don't remember him ever showing these symptoms. I will definitely have him tested for strep, too - I only remember him having this once in his short life, but maybe the antibodies are still present.

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Mom04,

I just wanted to add that something you could look into, completely benign, is just getting a throat culture to begin with. When a young child begins to show any signs of tics, OCD, anxiety, aggressiveness (etc..there are so many different symptoms) you could possibly be dealing with PANDAS. At this time of year, there is so much strep going around, he may have been exposed to strep. I am not in any way saying your child has PANDAS, but what you have described in your son is exactly how PANDASA began with my daughter at that same age. There is a wealth of info on this site (PANDAS forum) about PANDAS.

 

A lot of times when a physician hears that a child has tics, they immediately think Tourette's and begin with neurology appointments, psychiatric evaluations, psychiatric medications, etc... and miss the fact that it is actually PANDAS caused by strep. That is why is can be extremely helpful to just ask your pediatrician to do a strep culture, regardless of the absence of any physical symptoms of strep, b/c many children do not get any physical symptoms when they have strep (my 4 childrten included in this category). I know whn they have strep based on their behaviors b/c they get no physical symptoms.

 

Colleen

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Thanks Colleen. If a strep test comes back positive, does that mean that, for sure, that is what's causing the behavioral change? Could it be possible that he's had strep for over a year...because he's been acting this way for a while. Would simple medications/antibiotics get rid of this, or once you have PANDAS, you have it for life?

 

I will check out the PANDAS site, too, thanks!

 

Mom04,

I just wanted to add that something you could look into, completely benign, is just getting a throat culture to begin with. When a young child begins to show any signs of tics, OCD, anxiety, aggressiveness (etc..there are so many different symptoms) you could possibly be dealing with PANDAS. At this time of year, there is so much strep going around, he may have been exposed to strep. I am not in any way saying your child has PANDAS, but what you have described in your son is exactly how PANDASA began with my daughter at that same age. There is a wealth of info on this site (PANDAS forum) about PANDAS.

 

A lot of times when a physician hears that a child has tics, they immediately think Tourette's and begin with neurology appointments, psychiatric evaluations, psychiatric medications, etc... and miss the fact that it is actually PANDAS caused by strep. That is why is can be extremely helpful to just ask your pediatrician to do a strep culture, regardless of the absence of any physical symptoms of strep, b/c many children do not get any physical symptoms when they have strep (my 4 childrten included in this category). I know whn they have strep based on their behaviors b/c they get no physical symptoms.

 

Colleen

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If the strep culture is positive, it doesn't tell you with 100% certainty that it is PANDASA, but it sure would point in that direction. Yes, you can have untreated strep for a long time without knowing it, especially if you do not get any physical symptoms. My daughter had an onset of tics in October, which worsened throughout the winter. It was not until late January that she spiked a fever and we found out she had strep. If he does have strep, my advice would be to treat it aggressively.

 

Colleen

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