Gifted Issues Discussion homepage Forums Twice Exceptional possible Tourette's with OCD

Hi all! I haven't been on the board for a while, but had some questions for the collective wisdom. Sorry this is long. Brief background on my 4 1/2 DD: she is doing well in her play-based Spanish immersion preschool. She's a native Spanish speaker and highly fluent in both Spanish and English. She's a very happy kid and social, gets along well with other kids, doesn't have trouble following classroom routines or sitting still in class, is engaged. Her energy level is very high and she does a great deal of crazy daredevil behavior on the playground. Without going into details here, I have ample reason to think her IQ is very high. I am planning on testing her with the WISC when she turns 6.

We have been in ongoing contact with a pediatric neurologist who has given DD a pending diagnosis of Tourette's with OCD. Basically, the behaviors (which I'll outline below) have not crossed over yet into being a problem for DD. The way the neurologist explained it is that when it becomes a school or social problem, then they'll "officially" diagnosis her. The main issue DD has is ticcing (we've been in contact with the pediatric neurologist for tics for over 2 years now, but she's had issues all along). The intensity and type of tics comes and goes, but the one that has remained consistently is hand-sniffing. When she's in a quieter period it can be a couple of times a day, when she is in a tic "storm" like now, it can be up to several hundred times a day. She does not appear to be anxious and I can't connect the storms to increased life or school stress, the "storms" just seem to happen. Right now it's hand sniffing and throat clearing. The last "storm"-- several months ago--involved hand-sniffing, grimacing, and a shoulder shrug. She's sensitive, extremely intense and highly overexcitable. She also still trembles when she is excited about or anticipating something, and has trembled when excited since she was a baby. She hasn't been teased about the ticcing at preschool so far as I can tell.

Other things: she can be preoccupied with order at times (examples: extensive cleaning up of her eating area and wiping table down before eating dessert, making me put her geode in the exact right space on the shelf before she'll go to sleep, etc.) This hasn't presented a problem at school yet. She has had clear sensory issues since infancy all the way through: sounds, bright lights, fascination with sand and textures, daredevil playground behavior. She was dragged out of school concerts repeatedly for crying about them being too loud. She had intense separation anxiety as a baby/toddler that went on for a long time, was a drop off crier the previous two years of preschool but not this year. As a toddler, she would not stop picking at a pimple on her face over a period of months and caused a scar. Don't know if that's related or not. She had a few unexplained very minor seizures when going to sleep as a baby. She's a very healthy kid, no other issues.

I had OCD as a child and still have it as an adult, but it's been subsumed under a PTSD diagnosis. I also have an unrelated (non-Tourette's) neurological issue as an adult. I guess I'm not sure quite what to do with this. We have been taking a wait and see approach on the recommendation of the neurologist. She's starting public school K next year. Does anyone else on the board have a kid who had the same issues at this age? Did it later develop into Tourette's/OCD? If so, when did the "official diagnosis" take place? How/when did it become a school issue, and, if so, did you have a IEP in place for it? Sorry, I have a lot of questions and am completely new to this. Any information would be helpful. Thank you so much!!!

I'm glad you posted this. Our DS7 has had verbal and motor tics (simple and complex for both) for about a year and half, although we suspect it's been longer than that when we include excessive throat clearing and grunting that we thought were related to his asthma at the time. When those two are included, the tics go back to the age of 4. We haven't pursued a diagnosis of Tourette's for him, but he sure fits the diagnostic criteria. He also exhibits some OCD characteristics - especially the obsessing over negative themes/thoughts. He definitely has sensory issues as well, including aversion to certain food and clothing textures (do not get me started on tags and seams). He also tends to be sensory seeking when his tics are in a "waxing" phase - lots of continous spinning, pushes his head into my belly repeatedly, wants to play rough, etc.

We've had a myriad of issues related to educational fit due partly to the fact that he is HG+ with definite overexcitabilities and partly to poor school fit. We saw one psychologist who came highly recommended by a DYS family who felt that if he were in a full-time gifted classroom with a teacher who is equipped to handle the social and emotional needs of gifted kids, we would not see the levels of anxiety and tics that we see. Trying to pursue a full-time gifted placement however, even with a letter from the psychologist, was an absolute nightmare. Instead, we took him out of his first elementary school due to their rigidity and inability to recognize the differences between high acheivers and gifted kids. Because of this, he failed to meet the cut-off on their checklist of gifted characteristics and they would not recommend him for full-time gifted. For a variety of reasons, he is not an overachiever (but kicks butt on achievement tests), and was put in a class with nothing but high achievers and then felt he was "dumb." I'm sure I don't have to tell you how bad the tics were while he was at that school. . .sigh. . ..

We moved him to a much more laid back school where he's in a class with kids of all ability levels and has one day a week gifted pull out. He now has a much better view of his abilities (as do his teachers) because he is being judged, for lack of a better word, against a variety of students. His tics and anxiety were decreased considerably at first, but I always make sure his teachers know that he has tics and what type we're seeing at home so that he doesn't get in trouble for doing the occasional twirl in line or flexing both of his middle fingers against the desk when he's concentrating. He's phenomenally good at holding in his tics at school or making them blend in with other things that he's doing, so his teachers are usually surprised to hear about his tics.

We've recently seen his tics ramp up and he's now having some social issues, so we're planning to take him to a pediatric neurologist to see what's what. We're also working with his teachers to determine whether a move to a full-time gifted classroom is the best thing for next year. Given that his fine motor skills are a little behind his classmates, we want to be sure it truly is "different work, not more work." If we need to have an IEP in place so that the placement is successful, we will pursue that. So far, however, the leadership and teachers at the school have been accomodating.

I think the best advice I can give is to find a school that is flexible in it's approach to student success. Try to determine ahead of time which types of schools will serve your daughter best in terms of support and educational fit. Ask very specific questions and pay attention to non-verbals. When we were looking for a new school for DS, we made a decision that if the principal didn't smile at the children and say hello to them as they entered the building, we weren't interested. If you don't have school choice like we do, you may NEED to have an IEP to get her what she needs at a neighborhood school. I'm very new to the advocacy stuff though, and I'm sure there are others on these boards who will offer you more specific advice. I wish you all the best as you take this journey.

Puma your daughter is still very young. For diagnosis the tics need to be present for at least a full year.
Tourette and OCD share the inability of controlling something (e.g. anxiety producing thoughts or tics). The anxiety can be helped by psychotherapy and tics by medication. Tics tend to be worse at age 10 and go away by late teens/young college age. Hopefully your daughter's tics will go away.

http://www.tsa-usa.org/

I haven't posted on this thread before because I don't have experience with Tourette's. I had very severe, incapacitating OCD as a child but no longer have it (without medication). My daughter has had issues with anxiety and I have worried about it sometimes, but we have been working on it with her with a psychologist since she was in kindergarten and I think that is helping to prevent the issues from getting worse. It has been manageable; it's just noticeable that she is more anxious than other kids, but has never developed into a real problem. We talked with her psychologist about the possibility of an IEP for other medical issue as a possibility for the future, but the real problem was the school environment and she improved dramatically with a grade acceleration.

Thanks so much for the solidarity and replies!! Diamondblue--hearing about your son's experiences was very helpful. I agree with you on the smiling principal! And the need for a flexible school for K. I'm glad that your son's current school has been flexible so far. It's hard to tell in advance how flexible a school is going to be, unfortunately. My DD will need differentiation anyway, so yikes. Fingers crossed! Bina--my DD actually has had the tics for well over a year (more like 2, with some other stuff before)-- since we crossed the 1 year mark for the tics, I got more concerned that she might eventually wind up with a diagnosis. Apm221--glad to know that the psychologist is helping your DD. I'm definitely going to monitor for anxiety as well-- I've heard that getting good and prompt psychological help for a child's anxiety makes a huge difference, so I'll see if that comes up for my DD. Thanks, all!

Not sure if this will be helpful to you but my son had some tics on and off, some OCD, he has an anxiety disorder. I read somewhere magnesium helps with tics and such so I started giving him Epsom salt baths (for the magnesium). Within a week of starting the baths, the tics stopped. Completely. I have him take an Epsom salt bath now at three times weekly (usually more like 4 or 5) (I even brought it with us on vacation). I put at least two full cups in his bath each time and I have him soak for no less than 15 minutes each time. Really worked for us. Tics have not come back at all.

Thanks for that tip Irena. I will definitely look into it as well.

Thank you SO much, Irena! I am going to try this. My ds12 is having a hard time controlling his throat clearing.