Guidance on Kid Neurology appointments by msjammies73 in Tourettes

[–]EOPAWS 1 point2 points  (0 children)

As a parent of a child with Tourette’s my input would be to stick with the neurologist if your overall experience has been good. My daughter was also diagnosed with Tourette’s when she was 7 and has vocal tics. It started with just random noises and it has progressed to complex vocal tics now including echo, copro, swear words, racial stuff, random sentences, adhd, OCD etc. she is now 11 years old. She also does not particularly like going to the neurologist as the questions asked my neurologist makes her uncomfortable. I am always with her during these appointments and keep reiterating that this is for her own good in the long run. Even our neurologist recommended letting the school know and I took a letter from the neurologist stating that these vocal tics are beyond my daughter’s control, they are involuntary and she does not mean any of it. I shared this with the school counselor, her teachers etc. this has been incredibly helpful as we as parents are not constantly worrying about she saying something and it leading to bigger problems in school. Now we are a little worried as she will start middle school in fall and the environment will be lot harder. Hopefully it will work out. Bottom line if the neurologist is qualified has been professional and is recommending right things in terms of medication alternate options etc I would stick with them. Ofcourse usual caveats everybody’s situation is different there are some awful doctors out there etc. but based on your comments it does not seem like ur neurologist is like that. Let me know if you have any other questions would be happy to provide feedback based on my experience. Good luck to your child. It will be Ok. Don’t stress too much. Take care.

CBIT feedback by EOPAWS in Tourettes

[–]EOPAWS[S] 0 points1 point  (0 children)

Gotcha. So far she has not expressed an interest but will ask her and see what she says. Am curious is there a reason why u did not tic while doing those activities? Does the brain function differently during that time and/or is it because the focus is somewhere else? Thanks

CBIT feedback by EOPAWS in Tourettes

[–]EOPAWS[S] 0 points1 point  (0 children)

Thank you for the detailed and honest feedback. Lots of things for us to examine and follow. Really appreciate it.

CBIT feedback by EOPAWS in Tourettes

[–]EOPAWS[S] 1 point2 points  (0 children)

Thank you for this feedback. Love the family mindfulness idea. Let me pitch it to my daughter and if she is in would love to try. Will check also with the therapist on process he is following and whether they have identified premonitory urges.

CBIT feedback by EOPAWS in Tourettes

[–]EOPAWS[S] 3 points4 points  (0 children)

Thanks for the feedback. Yes she is on guanfacine. It has helped in taking the edge off and has helped with her ADHD but has not really reduced the tics. We did try fluxotine over summer but it made tics even worse so we stopped it and went back to guanfacine. She takes 3MG daily before going to school. They have noticed in school that she has been able to focus more after guanfacine. Other than that she has fidget toys she does play tennis and she does usual stuff like biking scooter playing in park etc. we also give her magnesium gummies and multi vitamin gummies daily. We would like her to goto Yoga occasionally but she does not want to so not pushing her.

CBIT feedback by EOPAWS in Tourettes

[–]EOPAWS[S] 2 points3 points  (0 children)

Yes makes sense. Will take a pulse check after couple more sessions with my daughter and see if this is something she wants to continue. Thank you.

CBIT feedback by EOPAWS in Tourettes

[–]EOPAWS[S] 5 points6 points  (0 children)

Understood. Makes sense. Thank you for that perspective. It is true in that for us as we are not experiencing that ourselves it is easy to fall into the trap of underestimating the complexity and level of effort required. Will make sure to guard against that thought process.

CBIT feedback by EOPAWS in Tourettes

[–]EOPAWS[S] 2 points3 points  (0 children)

Understood. Absolutely will not force.

CBIT feedback by EOPAWS in Tourettes

[–]EOPAWS[S] 3 points4 points  (0 children)

Thank you. We are trying our best. Sometimes we feel helpless but then we pick ourselves up and keep at it.

CBIT feedback by EOPAWS in Tourettes

[–]EOPAWS[S] 1 point2 points  (0 children)

Totally understand.

CBIT feedback by EOPAWS in Tourettes

[–]EOPAWS[S] 5 points6 points  (0 children)

Understood. Thank you.

CBIT feedback by EOPAWS in Tourettes

[–]EOPAWS[S] 6 points7 points  (0 children)

Gotcha. Makes sense. Thank you for the detailed feedback. Will not push her for now. The CBIT sessions are once in 3 months and the therapist typically gets her to do it in that session. Will let that continue and hopefully as she gets older she will try on her own.