Merry Christmas, we have another diagnosis...

[Andrea Danielle]

Hi there, around a month ago, it was confirmed that my 5 year old difficult child is bipolar and I was getting comfortable with that diagnosis and following the posts of people whose kids are BiPolar (BP), got all of the books too of course. On Friday, we were told that yes, he is very likely BiPolar (BP) but his main diagnosis now is Tourettes. I have to get a whole new library of books and need some new forum friends who can guide me on Tourettes, and find the best websites to go to. We had been sent to a Tourette's Syndrome specialist for the past month because the psychiatric had noticed some tics but quite honestly I thought they were wasting their time because I couldn't imagine that this is what he had and now I am just in shock!! I can't believe he has this but every time I look at him it seems that he has more facial tics. :tears:
I am worried about his future. He is so smart and funny and we adore him, we just want him to have a normal happy life.
The good news is that at the hospital where we are going to the Tourette's Syndrome specialist, they have a Psychiatrist who specializes in Explosive Child techniques and helps families implement it!! I am getting an appointment hopefully in February! The specialist told me that we are way ahead of other families who are first given the diagnosis because we are already doing Explosive Child :smile: and that is exactly what they recommend!

Any Tourettes parents with some words of wisdom for me??

Andrea

PS. I was just showing my husband around this forum and telling him that it is because of this forum that I pushed so hard for a proper multidisciplinary evaluation and would not settle for the first diagnosis of ADHD. I get such great guidance here!! :smile:

 

[SRL]

Good work, Andrea! And that's great news that you have specialists right there in your area that understand your child's needs. I wish we could all be so lucky.

My difficult child has a first cousin with Tourette's Syndrome that was diagnosed at around age 7. They'd seen explosive behavior but just thought it was temperament. They didn't make any connect with the facial motions and tics (thought the nose movements were allergies) until he had a big flareup requiring a neurological workup. After learning more and looking back in hindsight they realized the tics had always been there.

I agree that you're way ahead of the game due to your willingness to apply TEC methods. In addition to doing your homework on Tourette's Syndrome you might do some looking into the area of Sensory Integration Dysfunction. I've often thought that even though my nephew doesn't have Sensory Integration Disorder (SID), that many of the techniques (ie calming activities) would be beneficial to him. Has he had an Occupational Therapist (OT) evaluation yet?

 

[totoro]

Sorry for the new diagnosis Andrea. Are they holding off on medications. now? I agree with the Sensory Integration Disorder (SID) theory, it helps with BiPolar (BP) regardless. It sucks though to be the one fighting for your child and to just keep getting "bad" news...been there done that. At least you can start the process if you truly are comfortable with the diagnosis.
It sounds like you are doing your research though. Wish I could help with the Tourette's Syndrome, I am with you on the BiPolar (BP) though... Keep fighting and and asking questions.

Good luck

 

[jannie]

Andrea-

I know you don't want to hear another diagnosis, but sometimes it can be really helpful to understand the behavior. I'm 99% certain that my difficult child has Tourette's Syndrome, however, the medication he is taking (abilify, and tenex) is often used to treat tics and tourettes so basically his tic symptoms are minimal.

My roomate in college, and a few close family members have Tourette's Syndrome (including my husband). It has impacted their lives, but medication has really reduced the symptoms. Three out of the four are quite successful (families, college graduate, successful careers etc).

Tourette is much more common than most people think and I believe there are many many undiagnosed people living with tourette. Which means, that many cases can be mild-and symptoms come and go.

Stress can make the tics worse. difficult child used to have this cough and he just told people he couldn't help it--it really just a funny sneeze. A recent therapist told us that she thought tourtette was really the main diagnosis with difficult child and that his mood disorders and or frustration symptoms were more related to tourette than anything else.

What did the doctor suggest? I think its fantastic that the local hospital has specialists.. I thought you were considering risperdal? Risperdal, abilify, geodon, tenex are just a few medications used to treat it...so medications can treat two diagnoses at one time.

Also-Way To Go with Explosive child techniques-you are already prepared. :smile:

 

[tiredmommy]

Andrea,
I understand you feel overwhelmed right now. Try to think of this as something that's always been there rather than a new diagnosis. I think it's great that you have such top notch treatment available for difficult child. There are some members that deal with Tourette's Syndrome over on general as well. You are definitely not alone.

 

[Andrea Danielle]

Thanks everyone!

SRL, you always have such great advice, thanks for the website link and for telling me about your nephew with Tourette's Syndrome. Yes, in fact, the same hospital where he goes to the Tourette's Syndrome specialist is also lining us up with an Occupational Therapist (OT), and a Neuro psychiatric too. I look forward to getting some advice from the Occupational Therapist (OT), he definitely has sensory issues.
Totoro,
Jannie, thanks for the first hand insights on Tourette's Syndrome, I am sure I will have questions for you along the way. They have not given us their suggestions yet for medication, so far just the Risperdal have come up, we will hear at the end of January.
Tiredmommy, thanks for your support, and kind words.

Take care,
Andrea