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.  www.evergreenneurotherapy.com 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.



Tuesday, October 15, 2013

This new trend is flat out annoying

I've noticed lately that when I go out shopping, there is usually something in my cart that flags the cashier and they try to sell me a "service plan" or "extended warranty".

It started with the new vacuum I bought a couple of months ago.  Wal-Mart wanted to know if I wanted to buy the "whatever-it's-called" for an additional fee.  This is in case it breaks or something.  If it breaks, I'm going to take it back and ask for a replacement, why should I pay extra for that?  I thought it was weird.  I know they do it for TVs and stuff, but a vacuum?

Fast forward to last week.  Tommy's equipment bag for baseball needed to be replaced.  the zipper had broken and would no longer close.  We went to Dicks and bought a new bag, it was $25.  They asked me if I wanted to purchase the protection policy (all of the stores call it something different) for $5.  Are they joking?  It's a bag that gets thrown around the dugout, gets sunflower seeds spit onto it and holds dirty, smelly gear.  My guess is if it wears out, it is a sign that it's time for a new one.

Over the weekend I bought Tommy a Disney Infinity (video game where you have different character figures) person, it was $13.  Wal-Mart flagged it and did I want to pay $3 for the extra coverage?  REALLY?  On a plastic monster with a computer chip in it's butt?  I think not.

This is really becoming irritating.  Are we buying products that are so shoddily assembled that we now need to pay for extra insurance that the product works and lasts as long as we expect it to?  Higher ticket items like cars and appliances, sure...but NOT a video game character, or a vacuum, or a canvas bag.  I'm outraged!

What's next?  I've come up with some scenarios for you:

You buy a bottle of tequila, do you want to pay $3 extra to make sure you get really drunk?

Pay extra for a gallon of milk so that it doesn't expire before it should?

How about a surcharge on pain reliever?  If you REALLY want that pain to go away, you better pony up another few bucks!

When you get a face-lift you better buy that extended warranty in case your cheeks start to droop.

I'm boycotting all of these service plans and if my crap breaks, I'm taking it back.  End of story.  However; if I could pay a few bucks extra next time I go golfing to guarantee I shoot under 100, I'd be all for that.

Tuesday, July 30, 2013

Bullying

I hate that word.  It's like it is this buzzword that all kinds of behavior gets attributed to.  Even one of the housewives on Bravo claims that the other women were bullying her.  I thought of it as just a word until recently, when it really hit home.  MY home.

As many of you know, Tommy has been struggling this summer.  He has mentioned here and there about kids picking on him and I told him to deal with it, or ask for help at his summer program, also known as BASE.

About 6 weeks ago he started sleeping A LOT.  After BASE, on the weekends, in the back of the car, AT BASE, everywhere.  Tommy hasn't napped in years, yet he's sleeping 3 hours at a time.  We went to the doctor, ran a zillion blood tests, went to the neurologist, no one has a solution.  In the meantime he gets an ear infection which makes him feel worse.  He misses several days of BASE, indoor skydiving and other fun things, and he doesn't care he is missing it.  He'd rather stay home and sleep.

During this process he is still mentioning that he's getting picked on and I'm starting to pay attention.  I mention it to the BASE staff, they tell me they haven't noticed anything. 

Yesterday I dropped him off and he sat down at one of the tables and it literally broke my heart.  I have never seen my son look so sad and dejected in my life.  I step into the office to talk to yet another member of the BASE staff and let her know what's going on.  I'm not in there 5 minutes and when I walk out, Tommy is in tears.  A group of boys immediately started picking on him and being vicious to him.  The other staff member said she addressed it and they admitted it and apologized.  I. Was. Livid.

Me:  Do you boys get some kind of thrill out of picking on Tommy?
Little Bastards:  Nooooo
Me:  Would you like it if you were treated that way?
LB:  Noooooo, shaking their heads
Me:  Why do you do it then?
LB:  I don't know
Me:  Do you think your parents would be proud of the way you treat other people?
LB:  Nooooooo
Me:  Well maybe they need to find out.  I'm going to call your parents and tell them how horrible you are.

You should have seen the look on their faces as I walked out.  I took Tommy back to the doctor today because after I left him yesterday, he slept in the office for THREE hours.  The doctor thinks that the bullying is really having an effect on him, and since no one at BASE would believe him, he is internalizing it and is basically saying screw all of you, I'm going to sleep to escape this crap.  We have an appointment with a counselor tomorrow, so hopefully that will be of some help.

This afternoon I marched my ass into the BASE office and had a good talk with the director.  As I was waiting for her, she comes around the corner with the Little Bastards.  They took one look at me and they knew they were in trouble.

I told her the names of all of the boys who have been tormenting him all summer.  Two of Tommy's friends also told me that they have witnessed him being picked on, so she talked to them, and she talked to the perpetrators.  She told me it would be taken care of and that she's really upset that Tommy hates the summer program and is miserable.  I told her that it's not acceptable for Tommy to ask for help, and he gets told to deal with it himself.  How is a 9-year old supposed to deal with a gang of bullies???

She told me that she would be speaking with all of the parents of the boys involved this evening.  When I got home there was an email from her to all of the parents about bullying, that they had a big discussion with the kids today about what bullying looks like, and how important it is to talk to a teacher when they see it happening to someone.

She called me tonight and my heart literally broke.  Every single boy admitted to it, that they had been doing it all summer, for no reason, and to no one else but Tommy.  I can't even type the things they said to him, I won't be able to see through the flood of tears to finish this blog.  How can boys be SO mean for no reason?  Tommy never did anything to those boys.  In fact, two of them don't even go to our school, they were just in the program for the summer.  They said they have been mean to him since day one, without even knowing him.

After all of this, I had a long talk with Tommy and told him what happened today and that the boys would be dealt with.  The relief that washed over him was transformative.  It was like he was a different kid afterward, chattering about this and that, I couldn't believe it.  Someone FINALLY believed him and took his side and took a stand to get things fixed.  He kept saying "Tomorrow is going to be a good day, right?"  I think he's petrified that there will be repercussions from these Little Bastards.

The physical toll this has taken on him, the sleeping, and his nervous tics coming back, it's heartbreaking.  When your child says he's getting picked on, it's easy to gloss over...all kids get picked on at some point or other.  That it got this bad, and to this point, I am disappointed in myself as a parent.  I'm angry at the kids involved, I'm angry that Tommy asked for help at BASE and was ignored...and I'm really mad at the other parents for breeding and creating those Little Bastards.

Please teach your children about bullying.  Tell them that's it is never OK to treat another person badly for no reason.  Tell them to talk to an adult if someone is picking on them.  Make this a regular topic of discussion as bullying takes different forms as our kids get older. 

I've held it together most of today, but now, I am going to go have a good, long, cry.