View Full Version : out of denial with Tourettes


twitchykdzmom
03-30-04, 01:36 PM
Hello everyone,
I am the mom of an eight year old little girl who is yet to be officially diagnosed with tourettes. We've had to wait 4 months to get in with a specialist , won't see him until the end of May. Very frustrating. We had no clue about the tourettes until she went on ADD meds. Her pediatrician mentioned it after I told him about her unusual "habits", ie., flinging imaginary things fom her hands while saying "fling, fling", coughing, rubbing her eyes, tapping, repeating back what you say to make sure she heard you right... you get the idea. I am currently homeschooling her, but are in the process of a full eval. at the school to see what they come up with and if they could offer her any help that I can't. I'm curious if any one else out there is trying to homeschool their child with tourettes or what your experience has been within the public school setting. My child thinks the phrase twitchy is a good discription to how she feels,so thats why we call her tics twitches. I did not want anyone to take offence, it's just what my child is comfortable with. Well, gtg, bye for now.

Energizer_Bunny
04-02-04, 10:16 PM
Hi twitchy and welcome to forums.

I am sorry to hear about your daughter. Calling them twitches is okay, because actually, that is what they are....tics or twitches are even outbursts.

I was in denial to about my Tourettes until I was placed on Wellbutrin, then I went from thinking I was just hyper to having tourettes that was high moderate to severe.

Did you notice if she had the any of the tics before the ADD meds?

And yes, it normally takes time to get into a good doctor that is very familiary with Tourettes.

Piupau
04-03-04, 03:46 PM
Hi and welcome. I have tourettes myself but got my dx (ts+adhd)as an adult (because of parents and teachers in denial) I am happy your daughter has a caring mom like you! :)

Even if it takes a while to get to the doc it's worth the waiting if he/she is good. It's no use to go to "just any doc" because it's faster. Most docs don't have a clue about TS.

Twitching, ticking, exploding, jerking, jolting.... anything goes ;)

Many hugs to you! :)

neuroangel
04-16-04, 12:36 AM
How does your daughter feel about all this? I'm going to the neurologist about Tourette's and ADhD Apr 19. I was looking forward to getting help, but now that it's almost time...I'm petrified. I'm so scared that there might actually be something wrong with me, and I'm afraid of what meds or tests I may have to take. :(

Cyndi

Piupau
04-16-04, 05:20 PM
You don't have to take any meds if you don't want them! They can't make you eat any meds if you don't want them.

I can tell you about my tests, bet I think they might be somewhat different because you're in America and I'm in Europe.

I was tested on linguistics, math, visual, logic, puzzles, IQ, series, planning, reading and following instructions, attention test (TOVA). Also they talked to my dad about how I had been as a kid, how I developed, learned to walk, run, talk, read, write, if I was active, careless and so on. That is for Adhd. For TS he just had to look at me and he said I have tics. NOT on the first visit. It took me three times to relaxe enough to be myself. Then he just wanted to know when it all started and how many different types of tics I had as a kid.

The tests doesn't hurt and are very easy to do. Believe me. If I CAN do it. YOU can do it! I thought I was going to die in there on my first visit! ;)

Why don't you take a person you trust with you? I had my husband and a very good friend with me who knows me. When my brain started to spin and I couldn't think at all anymore they started to talk with the docs and gave me some space, a "time out", to slow down.

*hugs* Cyndi! You'll be just fine on Monday! :)

FightingBoredom
04-16-04, 05:42 PM
Originally posted by twitchykdzmom
Hello everyone,
I am the mom of an eight year old little girl who is yet to be officially diagnosed with tourettes. We've had to wait 4 months to get in with a specialist , won't see him until the end of May. Very frustrating. We had no clue about the tourettes until she went on ADD meds. Her pediatrician mentioned it after I told him about her unusual "habits", ie., flinging imaginary things fom her hands while saying "fling, fling", coughing, rubbing her eyes, tapping, repeating back what you say to make sure she heard you right... you get the idea. I am currently homeschooling her, but are in the process of a full eval. at the school to see what they come up with and if they could offer her any help that I can't. I'm curious if any one else out there is trying to homeschool their child with tourettes or what your experience has been within the public school setting. My child thinks the phrase twitchy is a good discription to how she feels,so thats why we call her tics twitches. I did not want anyone to take offence, it's just what my child is comfortable with. Well, gtg, bye for now.

I DO NOT take any offense to what you are calling your daughter. I caution you to stop calling her this and only call her by her name or something positive.
I have done considerable research and study into Neuro Linguistic Programming and I can tell you that calling her twitchy is not a good thing. Granted, it may be factual and it definitely isn't causing her to be "twitchy". Unfortunately, all 8 yr olds will BE comfortable with what there parents call them if it is done in an affectionate way. That's bc, until a certain age, children take what their parents say as the Gospel truth. (Why do you think most of us need therapy to fix what our parents unwittingly caused?)
So, nick naming your child as "twitchy" may seem benign at the moment. She may even find it funny and be comfortable with it now. However, when she is 35 and going through therapy it will rear its ugly head as a trigger to something that caused her to lose a job, or drop out of med school or some other damn thing you can never predict.
This is why it is SO important to find a more positive nick name like: spirited, or something else she is very good at.

For example:
My 5 year olds head has been oversized for his body since he was born. Just like his dad.
He has recently made comments that HE has a huge head.
We tell him because he has a HUGE brain and then prove it by pointing specifically to where this shows he is smart.
He is already reading, he is doing multiplication, he has artistic and conceptual abilities that are mind boggling for a 5 yr old to have. And we tell him all of this and have avoided any nick names that refer to this situation.... and it is tough... I mean, I even have to avoid self deprecating humor about my own HUGE head so he won't make any connection!

neuroangel
04-16-04, 07:09 PM
Originally posted by Piupau
The tests doesn't hurt and are very easy to do. Believe me. If I CAN do it. YOU can do it! I thought I was going to die in there on my first visit! ;)

Why don't you take a person you trust with you? I had my husband and a very good friend with me who knows me. When my brain started to spin and I couldn't think at all anymore they started to talk with the docs and gave me some space, a "time out", to slow down.

*hugs* Cyndi! You'll be just fine on Monday! :)

Piupau, thanks for the vote of confidence! I know I shouldn't worry, I just can't help it. Only two people intimidate me, and he's one of them. Ugh...doctors. :)

I would bring someone, but my mom is at work. Maybe he can do a phone conference with my grandmom though, she practically raised me. Thanks again!

Cyndi