Sunday, June 21, 2015

Brain Training: Twelve sessions in

Tommy completed his 12th session on Friday.  When we started this process they said we would start to see results in 10-12 sessions.  I'm not sure if the tics have decreased or not.  To me it seems like they are as present as ever.  Most of his tics are bilateral, meaning he moves both arms at the same time.  I have noticed that sometimes he only moves one arm.  Maybe that's forward progress, I don't know.

He has moved from playing games with his brain to watching movies.  Big deal, right?  Well, if his brain doesn't do what it is supposed to, the movie goes blurry and he has to slow his brain down in order for it to come back into focus.

I read a fictional book this week that hit close to home called The Perfect Son.  It was about the parents of an only child with Tourette's Syndrome.  His name was Harry and he was 17.

The mom was primarily in charge of the treatments, the visits to the psychologist, the psychiatrist, the therapist, and all of the activities he did, like vocal training.  The dad was very focused on his job and really had no idea what his son went through on a daily basis.  The mom had a heart attack and the family dynamic shifted and the dad had to be more involved in Harry's life.

The thing that struck me most was that Harry had a best friend named Max.  They had been friends for years.  Max was his best friend, his brother, his protector.  When anyone messed with Harry, Max was there for him.  When Harry's mom was sick, Max was there for him in an instant.  I know this book is fiction, but it made me think, WHY can't Tommy have a friend like Max?  He needs that, more than you can imagine.  This journey would be so much easier for him if he had a friend like that that he could always count on.

He HAS friends, but these kids are 11-12 years old.  They get frustrated with Tommy, he has impulse issues and says things before he thinks.  He gets angry easily.  He misjudges social cues.  These are all things tied to TS and kids don't get it and they distance themselves.

Middle school starts in August.  I really hope that Tommy walks into school and meets his Max. "Max" doesn't need to be perfect.  He doesn't need to be a jock, or a musical star, or the smartest or most handsome kid in school.  He just needs to be a friend that Tommy can count on through thick and thin.  Underneath the TS Tommy has a lot to offer.  He's funny and smart and "Max", if you are out there, Tommy is waiting for you.

Thursday, June 4, 2015

The latest in all things People Hater

I've lost track but I think we have done 7 brain training sessions.  I had a nightmare the other night that whatever they are doing to him worked in reverse and made the Tourette's Syndrome worse and they didn't know why.  I think this stems from the fact that after every session his tics are REALLY bad.  They were really bad yesterday and even worse last night.

Tommy's struggle this summer is that his friends aren't really available during the day.  Most of them are in a summer program and the two boys up the street went out of the country until September.  Tommy didn't want to do a summer program, so he's basically doing nothing.  The first week has not been easy.

Last night he was playing with a friend and I'm not sure what happened but all hell broke loose and he came home super upset.  When the kids are messing with him (not in a mean way) he takes it wrong and flips out.  His impulse control is non-existent, and those of you who know him understand that he can get really LOUD. 

He got home and was upset and the tics were so bad it's like he was having a seizure.  I pretty much melted down while I was talking with his mom...too much going on right now and I'm feeling overwhelmed.  Adrian is working his butt off burning the candle at both ends and we are stressed.  I feel guilty because I won't be home the next 2 nights and worry about Tommy.  I feel like I'm on one of those things at the park that spins super fast and I can't get off and I want to throw up!

I guess the point of this blog is that Tourette's Syndrome just doesn't effect the person afflicted, the whole family deals with it and it is not easy. 

Since it is Tourette Syndrome awareness month until June 15, here are some facts for you:

  • One in 100 people, mostly males, have Tourette's. 
  • There is no cure for TS.  Yes, people can learn to control it, but it's very difficult.  Think about your nose itching and you can't scratch it.  The more it itches the more agitated you become, but you can't reach it, you can't make it stop.  That is what it's like to hold in a tic, it can be physically painful.
  • About 25% of children with TS will outgrow it.
  • There is no medication specifically to treat TS.  There are drugs for things like high blood pressure, heart conditions, migraines, etc. that have good results in children with tics.  For Tommy, many of these worked for awhile, but then they just stop.
  • Tourette Syndrome is not just verbal tics.  Lucky for us, Tommy's tics aren't verbal.  If you ever come across someone who is making noises like throat clearing, screeching, etc. it is possible that they have TS.  Be kind, don't stare.
We are looking forward to the next couple of weeks.  Between 10 and 12 treatments we hope to start seeing positive results from the brain training, in the form of reduced anxiety and reduced tics.  Stay tuned.

Thursday, May 21, 2015

Brain Training Update

We are a few weeks into brain training and Tommy has done 4 sessions.  The protocol changed and they will be focusing on the left part of his brain instead of the frontal lobe:

The last 3 sessions his leeds have been lie the photo.  He plays lots of different games using his brain, like skateboarding, boating, and carnival midway games.  I usually go into the room with him, but after looking at the screen I feel oogy, like I've been hypnotized or something!

The drive home is killing me.  We have gotten into bad traffic every single time, averaging about an hour to get home.  It's exhausting for both of us.  Immediately after treatment his tics are pretty bad, but then he falls asleep:

Poor kiddo.  Then he's super cranky for the rest of the night.  Fun times.  We are 4 treatments in and should start to see results at 10-12 treatments. 

Starting next Friday we will start going at 8am.  Tommy is not happy with the time, but on Wednesdays I can take him and then head to the office and Adrian can pick him up.  That way we get it out of the way, and I don't have to fight traffic in the evenings.

Not much of an update, sorry!

Saturday, May 9, 2015

Brain Mapping and Brain Training, Session One

Last Saturday Tommy had his brain mapped.  Here he is getting comfy before they strap on the cap to read his brain:
I was worried because his tics were really bad that day and sure enough, as soon as they put the cap on he started having tics:

Things settled down and they were able to get a good reading.  He spent about 20 minutes with his eyes open and then another 20 minutes with his eyes closed.  When they read the data they take out all of the tics and eye blinks and other movements so that they have straight brain wave data.  He also had to take a test on the computer.
They read the data and mapped his brain and we went back yesterday for his first brain training session.  It turns out that the part of his brain that needs help is along the frontal lobe and on the left side of his brain.  They got the electrodes hooked up to his head:

There were 4 electrodes plus one on each ear.  He played a series of games and the technician led him through them, I think there were 6 or 7 in all.   There was a boat game and a series of Carnival Midway games:

When he did what he was supposed to, the blocks would get knocked over, or the balloons would pop, or the clown's face would fall off.  It was pretty interesting to watch.  After about 45 minutes we were finished.  His next sessions are Wednesday and Friday and we'll go twice a week for the next 10 weeks or so
On the way home he was tired and cranky and his tics were bad.  He didn't have them while he was playing the game but would have them in between.  The cranky/tiredness was from using a part of his brain that he doesn't use a lot, it was basically a work out for him.
We are also keeping a journal of his tics over the course of this treatment to see if and when they diminish.  Once they start to go away we can start weaning him off the medicine.
Fingers crossed that this works!

Thursday, April 30, 2015

Moving forward

It's been a rough year for our family.  We lost my dad last June.  After that, our son, Tommy, had in increase in tics from his Tourette's Syndrome.  We tried different medicines and got him somewhat under control.

In December my husband had a change in career and we lost our insurance.  Tommy's tics ebbed and flowed.  The stress in our household from all of the personal and professional changes was very difficult for the grownups, and an eleven year old boy who picks up on a lot.

The new year brought new changes.  A new job for the hubby and a whole new schedule for him.  Tommy continued to struggle with the TS (Tourette's Syndrome) and it was causing problems for him in school.  It's hard to learn when you can't focus.  It's hard to be at school when kids are mean.  It's hard to learn when people are not understanding.  We hired a math tutor (we parents suck at fractions) and tried to help Tommy stay on track.

We found a new awesome doctor and have been changing up his meds.  Mostly the changes didn't work, or caused reverse behavior from what we expected.  There really is no medicine to treat TS.  There are lots of drugs out there for other things, that help kids with tics.  They range from blood pressure medicine (made him too tired), to black label drugs.  You have seen the commercials...If you took DRUGX and suffered blah blah, call 1-800-BAD-DRUG now.  He took migraine medicine and the latest one is for kids with seizures. 

He's also taking medicine for anxiety, because if the anxiety is out of control, the tics go out of control.  He had the worst side effect from the first anti-anxiety medicine and we quickly changed that drug.

The next drug she mentioned to control the tics is Haldol and there is NO WAY IN HELL I am giving that to our 11-year old son.  It scares the ever living crap out of me.  I've sort of been stumbling along since then, worrying about what comes next.  Especially since Tommy starts middle school next year.  A new school, a bunch of new kids, anxiety out the wazoo.  I'm a wreck and should maybe take the Haldol myself.

Things were feeling very bleak...until Tuesday.  My mom called and to make a long story short, a former co-worker of hers runs a neuro-therapy business. and she has had some great successes with kids who have ADD, ADHD, Aspbergers, Dyslexia, Anxiety and she has also helped a child with TS.

Tuesday evening Tommy told me his tics were so bad and wasn't there something else we could try.  I told him about this new place and that I was going to look into it.  I went there on Wednesday and it seems amazing.  I've done further Internet research and read stories about it helping kids with TS.  I feel hope that I haven't felt in a long time.

Tommy and I are going there on Saturday for his brain mapping and testing and then he'll start next week, each Wednesday and Friday, to retrain his brain.  This is a big commitment for our family.  Tommy has to do his part, hubby needs to get him to my office on Wednesdays so I can take him up the mountain to Evergreen, and on Fridays (thank goodness I don't work on Fridays) I'll take him again for treatment.  I keep telling myself if medicine can't help him, then surely science will.

We should start seeing results 5-6 weeks in, but it will likely take 10 weeks.  It's pricey, but we are lucky to have family members who are helping.

I know my blog has been a source of entertainment, and then it became a black hole for months.  I'm going to use it over the coming weeks to talk about Tommy and his progress.  I can only think that we are going through this so that we can maybe help someone else someday.  Our family has experienced the downside of social media over the past several months.  There are some seriously vicious people out there.  I hope this treatment works because I'd like to reverse that karma and use social media to spread the word about neuro-therapy and how it can help kids like Tommy.

So if you are interested, stay tuned...and when we can get things turned around, I promise my old, fun blog will be back.

Wednesday, October 22, 2014

I'm baaaaacccccckkkkkk

I've been gone for a long while.  Losing my dad has been so difficult, and then a bunch of other crap happened over the summer, and I just didn't have the energy to be witty and write my blog.  I'm not so sure this entry will be all that witty either.

My mom, sister and I have been really struggling to get back to some state of normalcy.  I don't even know if "normal" exists anymore.  I do know that we couldn't have done it without our friends and family who love us through thick and thin.

In my experience, though, I have found out that you really find out who your true friends are when something huge happens. 

I was watching a movie on the Lifetime Movie Network last week (I'm such a deep person!) but something made me really stop and think.  The teenage girl in the movie lost her mom to murder.  Within a few months her best friend began dating her boyfriend and their excuse was basically "you have been weird and should be over this by now, you drove us together".  Pretty harsh, and while I haven't had those exact words spoken to me, I have had some friends make it pretty clear that they feel that same way, I should get over it and stop being weird.

You know what?  I'm NOT going to just get over it.  I talked to a longtime friend last night who lost her dad about a year ago and she said the first year is so hard, and that normal maybe doesn't exist anymore.  It was such a relief to hear her say that because the "friends" who aren't being very supportive have no idea.  They all still have their parents and haven't had to go through the unimaginable grief and sadness that I've been dealing with.  Trying to talk to them and make them understand doesn't work, I've tried.  In response I get "you need therapy or grief counseling or something, you should talk to someone".  Um...hello, I'm trying to talk to YOU.

I have such amazing friends who call and text to check up on me on a regular basis,  I don't know why I have been dwelling on the friends who have written me off.  Maybe they don't know what to say.  I don't need much, maybe a text just to say hi, they are thinking about me, or an email to ask how I'm doing.

So, this is a giant thank you to those who tried to make the past few months a little easier with kind words, love, friendship, and even food--Weight Watchers is happy to take my money every week as I try to lose my "grief fat".  Thank you for letting me be weird and sad without question.  Thank you for getting me and helping me through this shit show.

If you got through this and are disappointed, I promise my next blog will be about the day my dad asked me to take him to the pot store.  Stay tuned.

Monday, December 9, 2013

Observations from the Chemo Center

I'm really supposed to be working but the connection here is so sucky I thought I'd take a break, hope the Boss Lady doesn't mind.  Today is Kicking Cancer's Ass, Round 4.  After round 3 my dad got some really great news that the chemo is working and the cancer numbers are decreasing.  At least now he knows he doesn't feel crappy for nothing.

We got here super early today so we staked out our spot and I nabbed the wobbly TV tray for my office.  That Francie is dedicated.  She was late today and before she even took off her coat she came to make sure we have what we need.  Apparently today is ugly holiday sweater day.

The people here today are more chatty.  A gentleman was getting some treatment today and was talking about how sensitive he is to the cold.  My Dad said something to him about having had that before and this guy tells my dad he only has 3 or 4 months to live.  I can't even imagine.  Some of the people here today won't be around when my dad finishes his treatment a few months down the road.

There is another lady who was here last time.  Before she had this big ass suitcase, I'm talking giant, like you would take on a 2-week trip.  Last time she asked for the shuttle to come pick her up to take her over to the hospital, she didn't have enough energy to make the walk.  You all know me, while feeling really bad for this woman all I could think was "if your suitcase wasn't the size of a house, you could probably make it!".  Today she is here.  She maybe works at Taco Bell, she is wearing a Taco Bell shirt.  They have these nice recliners but she has her legs wrapped up in heating pads on a chair in front of her.  I don't know why she doesn't use the recliner, it would be much more comfy.  I could give these people some advice but with my lack of filter I'm keeping my big mouth shut.

Oh goodness, she just told the other lady that she is homeless.  She stays in a shelter or she stays at a hotel after chemo.  Not that having cancer is bad enough, she freaking has nowhere to live.  No wonder her suitcase is so large.  I want to take her home with me after listening to her talking about her circumstances.

The Fed Ex and UPS delivery guys that come here are quite handsome.

They have rabbit turd ice in the ice machine here.  Like Sonic ice.  I love that kind of ice.  Crunchy.

I did some work, now I'm back.  Dad has a harem here on aisle 2.  The newest entrant must have seen my sister's hair at some point and thought that teal would look nice with her gray hair.  She maybe should have gone to my sister's colorist.  She whipped out this GIANT needlepoint project that's on a frame.  This thing is so huge that her arms are totally extended out in front of her to work on it.  You know me and my picture taking...totally not appropriate here.  :(  This teal haired lady, she is the happiest cancer patient ever.  She's over there just smiling for no reason and she's had lots of phone calls.  Happy Happy.

Another lady just joined the harem...I'll assess the situation and report back...

Dad got a visitor and then we left so I have nothing to report on the new lady.  There was a lot more activity today and his treatments are getting shorter, but after observing some the the people today, it really makes me thankful for my health, and I even re-evaluated my crappy "I hate the holidays attitude" for a few minutes.