HANDLE Institute

[emma1]

I just came across this organization, which seems to use nutritional supplements and exercises to treat tics. Has anyone used -- the "testimonials" on their web site are very positive.

 

Also, if you are using, could you give me an idea of what the program is like, and whether it is expensive. (I have an older teen -- not sure she would want to participate if the exercises were not age appropriate.)

 

Thanks so very much!!!! I appreciate any and all help I can get. The doctor is thinking PANDAS and she just started antibiotics, but that seems to have made the tics worse!!!!!

[ad_ccl]

over the years a few PANDAS moms have posted their kids tics get worse on antibiotics - one reason could be an increase in yeast (make sure you are giving probiotics) another is artificial colour in the antibiotic - the kids immune system is usually so sensitive that things that in the past were fine will now cause a reaction. Also - if they think Pandas and one antibiotic does not work - then try another. Our kids are all so different - one thing does not work for everyone - although many are having success with azithromycin - I believe partly due to the immuno modulating effects.

 

If you do a search on this site for HANDLE - I think you will come across some old posts about it. I think at least one mom talked about it a couple of years ago?

[Guest]

Hi Emma,

 

I did the HANDLE program about ten years ago. I continued it for about 2 years. I don't remember the cost. I don't remember them suggesting any nutritional supplements at the time other than fish oil. Their specialization was more the exercises rather than nutritional supplements atleast at that time. The reason I stopped was because I got tired of doing the exercises. I was 12-13 years of age at the time and the exercises seemed more aimed at little kids. It's not that they were easy exercises that I just flew right through, but the type of exercises performed. For example, drinking with a crazy straw, blowing through a pipe thing that shot a ball up and then catching it in a basket hooked onto the pipe, twirling hula hoops on the arms in a certain pattern, a rocking activity, clapping activity, tapping on the face, etc. My parents did say that the HANDLE program helped me though. They do quite a bit of testing at first & they video tape it all. Hope that helps a little bit.

 

Carolyn

[samsmom]

We looked into the HANDLE program for our son, aged 6, last year. We live in the Seattle area so their office is very close to us. We went to one of the free parent info nights that they hold every so often (worth going to if you live close enough), but felt that the overwhelming area of emphasis in their work was autistic/sensory integration type behaviors. The cost when we were looking into it was over $2000 (all up front), and most of the work is done by the parents at home, with the HANDLE people acting as advisors. I asked for testimonials from other families with young children with tics and didn't get any useable contacts. We were given one name but the person was no longer at that phone number. They didn't come back with any more contacts for people who had used their services for tic-type problems.

 

I liked the people there - some of Judith Bluestone's stories are really compelling - but we did not have a lot of available cash to put into it and just didn't feel that it would be worth the financial cost. We ended up working with a local pediatric occupational therapist to deal with Sam's sensory issues and this only costs us a $20 co-pay per visit. They've been really helpful and I'm happy with our decision to take that route.

 

By the way, I asked our specialist at Childrens Hospital in Seattle (who is well recognised in the field of Tourette Syndrome) if he knew of the HANDLE Institute and he didn't, although they are right there in Seattle too...

 

Good luck

[patty]

Sam's mom,

 

May i ask about your son's sensory issues? As i too suspect my son has some sensory issues. He likes to keep his socks on 24/7. He also prefers long sleeves shirts & long pants. However, on hot days he does wear short sleeve shirts. He used to have both fine & gross motor skill issues which has pretty much resolved over the years.

 

As your son resolve his sensory issues, do you notice a decrease in tics? Because that would be my next step to continue to resolve his tactile issues.

 

Thx for your comment.

 

Pat

[patty]

Bump it up for Sam's mom.

 

Sam's mom can you please read my post and reply regarding sensory issues. Thx! I am wondering if tics can indirectly benefit by treating sensory issues.

 

Pat

[samsmom]

Hi Patty

A quick reply as I have to run out to get my son in 10 mins. We weren't really aware of any sensory issues with Sam until around a year ago (tics started over 2 years ago). It seemed like we became more aware of sensory issues when the tics started to subside more... He has proprioceptive issues, so was constantly needing to feel weight/pressure and would jump around on the furniture, throw himself into our big bean bag, etc. The OT helped us to work out what strategies to use to help him with this - basically heavy work, like vacuuming, carrying heavy things, digging in the yard..

 

I can't say that the tics and sensory issues are interlinked, except to say that I think that by helping him work out how to get the sensory input that he needs, we've relieved some stress for him and stress is a big tic trigger for him, along with pollen allergies.

 

Hope this helps

I can write more later if you need me to

Sue

[patty]

Thx Samsmom.

 

Pat