Well, this was a first for us. Luke and I spent all day yesterday in the Emergency Room because of his TS. He has recently redeveloped his old "head banging" as he calls it....very violent throwing of his head back to chest. It was so constant and so severe he started saying his "brain felt like it was tearing" and his vision was "going black". First time that's ever happened and it scared the daylights out of me!

The ER doctor was very good with Luke...but I have to say the nurses and other doctors were staring as much as the other patients!! He explained that the visual cortex lies in the back of the brain and that his brain was slamming against his skull repetitively causing the visual circuits to be interrupted. He said, in effect, Luke was giving himself a concussion. And, there was a real danger of his retenas detaching from his eyes.

We've had lots of severe ticcing over the years, including lots of things that hurt, but this was so scary. The Dr ordered a CT scan which was normal, thank goodness, and phoned a neuro for medication options. (Luke had only been taking Zoloft.) They decided a combination of clonodine and xanax might help, and thankfully it did within 30 minutes. Fortunately, he sent us home with enough until we can get into the neuro. The tic is still present, but not quite so contant, which makes the pain easier to bear.

Luke seems to be doing better today and there's no major fatigue or other side effects, at least initially. I just needed to tell that story to folks who understand. It is so very hard to watch your child hurt himself so badly.

Thanks for listening and caring.
Cheryl

Hi Cheryl,
It's good to see you but I'm so very sorry to hear about this episode of violent tics that your son is having. It seems that lots of children who've recently gone back to school over your way have been experiencing waxing tics.

How long till your appointment with the Neurologist? Hopefully it's soon. I'd give them a call if I was in your situation. The Xanax will hopefully relax him enough to get some rest temporarily. Also remember that Clonidine can take some time to build up in the system before seeing any effect on tics. Some people find it helps tone down their tics, but others don't.

Good to hear he's had a better day. Please keep in touch and let us know how he and you are doing. Will be thinking of you,

take care,
Lara

((Cheryl)) and (((Luke)))

having been thru those kinds of tics with my son I can honestly say I know just how scary it is

as Lara said, I hope that the neuro is able to see him soon and provide what is needed.
till then, I do also hope things stay stabilised and calm.


I dont know if it can be of help, but when my son would have those intense kinds of tics, he was always able to relax in a warm tub in which 2 cups of Epsom salts (magnesium sulfate) are dissolved. Really soothes the muscles and joints.
Also, if he is experiencing any pain at the back of his neck etc after this, he may have misaligned his cervical vertebrae (used to happen to my son a lot)
There is a specialised branch of chiropracty that can help with this...they are NUCCA trained and it is a very different form of chiro treatment. Very gentle and effective. They are particularly good with children ( http://www.nucca.org )

(((Big Hugs to both of you))) I am not familiar with everyone on this board yet but I can send hugs to you. Going to the ER is no fun anytime. Our last time was for dehydration. It was tramactic with a kid on the spectrum.

M&m

how are you ?i had to be in a hospital for 4 days -got shingles and eye infection

i thought i might die-i guess im better

Cheryl

I do hope that Luke's tics have stabilised

check in when you can to let us know how things are

Hi all,

Thanks so much for your kind thoughts. Luke is still taking the clonodine & xanax while waiting for the neuro appt. These are helping a lot, thank goodness! The head banging is very mild while taking them. I'll post more in a day or two. Thanks again for being here,

Cheryl

thanks for the update Cheryl! so glad things are mild now and that the meds are helping
Hope you have been able to get some R&R for yourself too...that whole experience can be so very stressful and often we dont feel it till some time has passed!

Hopefully that Neurologist's appointment isn't too far away. I don't know how often he's needing the Xanax, but it's a drug that can quickly build up to tolerance or dependency. I'm sure the Neurologist will give you advise about coming off that when you see her/him. In the meantime, I'm pleased to hear he's getting some relief.