New Territory

We are entering new territory.  Drew is going to his first sleepover on Friday night.  All the boys in his class were invited to one of the boys house for "EPIC NIGHT"  He is to bring his sleeping bag, swim suit and nerf gun.  A new Nerf gun has been purchased with extra ammo.  He has been excited about this for several weeks.

I, on the other hand, have been pretty nervous.  First concern - there is one boy that Drew doesn't always get along with and he gets on Drew's nerves.  I worry that as the evening wears on and as Drew gets tired,  that the boy will push Drew's buttons and he won't be able to control himself and will get angry.  I also worry that as he gets tired the tics will get worse and it will cause issues. The kids have never really said anything but things are tame and as excitement and tired creep in the increase.

Don't get me wrong I am thrilled he is being included and is having the experiences that all boys his age should have.  I did have a long talk with him tonight about several things.  I told him no matter what this boy did, Drew had to hold  his temper and walk away.  I also talked to him about the after effects of a sleep over. Being tired and grouchy and increased tics are two big ones.  I wanted him to know what too expect.  He did have some hesitation after we talked but I told him that we WANTED him to go and have a most awesome time but to know there could be some extra tics on Saturday.  

He has been practicing with the new Nerf gun.  I will talk to the mom tomorrow and give her a heads up. It feels a little strange because I usually let Drew control who he tells and how.  Also trying to figure out how to handle evening meds.  They make him sleepy  and he will crash about 20 minutes after taking them.  Not ideal for an EPIC NIGHT!.If he doesn't get them at all he won't sleep. ARG!!!! 

I am sure i am over thinking all of this but that is what comes with entering into new Territory.

90 seconds with TS

The first time I truly understood what TS and the co morbid symptoms was like for a child was while watching a video given to educators on teaching to children with TS.  It can be ordered here 

The presenter has a son with TS and did an exercise for the educators to find out what it was like to live with TS.  I cried as  I watched.  I had no TRUE idea what my son was dealing with.  Yes I heard the words and it was explained to me.  Not until I attempted to do the following exercise did I start to have a light bulb go off in my head and said OMG what have I closed my eyes to.  How can I be the best advocate for my son if I didn't understand what he was going through.  This segment helps someone who needs an understanding for those who don't know TS,  Try the exercise as she does it.  When you are done think of Drew.
  Or as real as anyone who can have it for 90 seconds of the exercise.  You can go back to normal but a TS kids will keep on ticcing.

Something else people don't understand is the toll it takes on the body... Drew is in motion all the time  There is not a time when his body is not moving.  This includes when he sleeps.  Hard to sleep with constant movement.  I know teachers don't like it when I keep him home for a day or half a day to let him sleep.  His body needs time to recover when the episodes gets bad.  Some days are better than others.  some days are a nightmare.  He has injured himself with this tic but he strives to be normal.  He rockclimbs,tumbles, plays basketball, does regular kids stuff.

Watch the video, do the exercise and leave me a note as to how it went for you.  I would be interested to know..

Cathy

Transition

A month ago I posted this update.  I hadn't heard anything and was worried that this was going to be yet another debacle with this school district. I started leaving messages with the superintendent and the advocate.     The superintendent called tonight and after apologizing profusely for letting the ball drop, he started talking about the next 3 weeks.

The principal at the school Drew will be going to was just promoted.  That threw a monkey wrench in things.  We all want the principal who will be at the school to be involved in this transition.  The current principal will be over 10 schools, including the one Drew will be attending. The VP may be promoted to principal so she would be another possibility to oversee the the transition.  The third option presented to wait till the principal is named in the next couple weeks.  NOT AN OPTION.  There are only 5 weeks of school left and I will be gone one of those weeks.  (rough life having to go to WDW for training)

I did feel good that he wanted the new school totally educated about TS. He has done his research and now understands that there are probably many in the district who have this that they are not aware of.  If 1 in 1000 suffer from some form of TS than Drew is not alone. He did admit they don't have an educational program in place for teachers let alone kids to understand TS. Everyone knows ADHD, Autism  and so many other challenges.  But very few understand TS.

The superintendent was going to send out emails tonight to all team members and by Thursday have a plan in place to meet with the current principal of the new school, VP and new principal( if one has been named) Then the psychologist and IEP case manager from the new school will go observe Drew and meet with the team at his current school. Then, Drew will visit the new school a couple times to meet teachers and kids.  After all of that we will have a HUGE meeting with the team from both schools to finalize the IEP (again).  there will also be education for the staff at the new school of all of the parts of TS.  All of this before May 11. I am tired just typing it, let alone living it. At some point there will also be education for the students. I am assuming that will be next school year.

The rough part will be telling Drew.  He has had so much change in the last year and has just begun to settle in. The superintendent has assured me they have done this many times and most kids settle in well.  I have been rehearsing all of the positives for Drew so when we tell him, we can excite him about the change.

In other new - Drew got his CPAP today.  Anxious to see how he feels in a couple days after getting good sleep.

Mother nature is still menopausal.  We got  9 inches of snow yesterday and 4 more coming tomorrow night.  At least it got above freezing today to get rid of most of what was received yesterday.

Drew got a freestanding basketball hoop this past weekend. A neighbor decided to get rid of theirs since their daughters no longer used it.  Great purchase for 30.00.

another piece of the puzzle

Sleep has always been an issue for Drew. I should say waking up has been a problem for Drew.  I have always said he loves his sleep.  He is impossible to wake up.  We suspected sleep issues for a long time.  I have heard him stop breathing (apnea) when we have shared a hotel room.  I had mentioned it to doctors in the past.  But no one ever did anything to see what the issue was.

UNTIL we moved here and got hooked up with the children's hospital.

A week ago Drew and I traveled to Broomfield for a night.  It was not a pleasure trip but me found some fun.  Drew had a sleep study scheduled at the satellite Children's Hospital.

First we stopped for dinner.  We went to Gunther Toody's for dinner.  Drew was in heaven.  they had monitors with old Popeye cartoons on.  He didn't say much while he was drinking his root beer float

Then off to the hospital. After getting Drew hooked up to all the machines and ready for bed our night started.  Drew barely stayed awake while they were getting things hooked up so he was out cold.

I wish I had been so lucky.I could not sleep.  The "bed" for the parents is not a bed it is a slab with a pillow.

About midnight the respiratory therapist came in and told me that Drew had yet to go in to REM sleep.  He had been asleep three and half hours. That was the first clue as to the explanation of the sleep problems with Drew.  He also said that there had been some dips in his oxygen saturation. 

The RT came in at 3 and said Drew FINALLY had gone in to REM sleep and he could finally put a CPAP mask on him.  He immediately went into REM sleep.  They woke him up at 6.  The RT told me it took about 2  - 3 weeks for the results to be scored.

On the way home (after a Starbucks stop) I asked how he felt. He said he felt a little more awake than usual.

I was surprised when the sleep doc called Thursday.  Yes Drew has sleep apnea.  The numbers were astounding.  I am not publishing them.  We now know why Drew is IMPOSSIBLE to wake up in the morning.  

Tuesday afternoon Drew will be fitted for his CPAP.  We are hoping for improvement in Drew's sleep.

Stay tuned for an update once we see what happens

talking about having Tourettes

First let me say HAPPY EASTER!!!

Second, sorry I have been MIA.  I took Hubs to the ER last Sunday and he had to have emergency surgery Monday morning.   He then developed a complication that set him back a couple days.  I am happy to report he came home yesterday and is slowly recovering.  Not exactly the spring break I was planning.

For Drew twitching has been something he has done for as long as he can remember.  First it was a shoulder shrug, then a hop step and over time they have developed.  One tic he as is that he holds is breath for a couple seconds.  That one bugs me.  I worry. His vocal tics come and go depending on stress.  We are seeing improvement since the Botox treatment.  That treats the simple tic of the head turn.

He has a couple complex tics.  The most recent is he puts his hand in front of his eyes and turns his head..

He gets so frustrated.  Tonight he was having snack and his body jerked and he spilled milk all over him and the table.  He immediately started to apologize saying " I am sorry.  It is my Tourette's"  I sat down and told him he NEVER EVER EVER had to apologize to me or anyone else for something he could not control.  I told him it is part of who he is just like his brown hair and brown eyes.  He told me he wished he had a sign he could carry saying he had TS.  He always feels like he needs to say he is sorry.

We started talking about how to explain it to people.  To educate them and how he could use humor.  It is a hard concept for a 10 year old to grasp.  I told him the best explanation to give is the one he gave the first time he met his rock climbing instructor.  "Hi my name is Drew, I have Tourette's, I twitch"

Works for me.  I have a couple of  my own. Some were swiped from other TS parents

Tic and the whole world tics with you...or at least stops and watches for a while.
A tic, a shout, that is what it's all about.
Sometimes I feel like a tic. Sometimes I don't.
And my favorite.  I made it up and hope it will make the parent Tshirt
Ticcing....It ain't just for clocks anymore!

With something like TS...Humor is the best education.  I hope I can help Drew to understand that.

Outcome of meeting with district

I have been putting this post off.  Not sure why because it is good news.  Maybe just so much to type?  Hesitant things would fall through?  I don't know but here we go.

Since moving to Colorado it has been one fight after another with the school.  The administration refused to get educated on Tourettte Syndrome.  Since the admin would not educate, the staff could not get educated nor could the students.  Every day it was a fight.  Drew was in a self contained classroom in California - not because of a behavior issue but because it was a good structured environment   He thrived.  His teacher in California was the most amazing woman who saw the potential in Drew.

Since Drew's IEP from CA was for a self contained class room the district decided he needed to be placed with kids who had bipolar, ODD and other behavior issues.  Not the best place for a kid who needed a quiet structured classroom. I couldn't even get him mainstreamed per his IEP.

In January I really started pushing for what he needed.  In small bits and pieces they started allowing him mainstream time.  The problem we were running into was that the kids in the Special Ed class were making fun of Drew and hitting him.  Problem was no one was telling me.  I would hear about it from Drew and then have to find out what was going on.  I started pointing out that Drew had no issue with the Gen Ed kids and the SPED kids had marked him as a target.

The special ed teacher watched some videos from TSA and went to the principal and told her Drew was in the wrong placement.  Didn't help.  The Gen Ed teacher went to the principal and told her Drew was in the wrong placement.  Didn't help.  It also didn't help that since the admin didn't understand TS or that anxiety  OCD and ADD are co-morbid.  They had labeled Drew a behavior problem.  I was also labeled a problem parent.

We had finally had enough - after 5 IEP meetings in 3 months and more time in the principal's office than any mom should spend  we decided to get an advocate.  She got the ball rolling and the next thing I knew we had a meeting with the principal, the advocate and the superintendent of special ed! I was so focused on that meeting, it consumed me night and day.  I was armed with TS information, IEP information.  I was a walking talking TS IEP encyclopedia. Oh yea, did I mention the letter from the Pediatric Neurologist who treats Drew's TS?

All of a sudden the admin starts changing their tune.  Scott and I arrived for the meeting.  We start talking about TS and how it affects Drew.  I very quietly hand the letter to the advocate who reads it and hands it to the superintendent he reads it.  The superintendent then says he thinks now that everyone has had time to get to know Drew we all agree he is in teh wrong place.  WHAT???? that was out of left field.  He also tells us he as a background in Autism and understands the similarities.  WHAT?????  After hearing everything he concurs that Drew is in the wrong class.  WHAT??????????????????????? We were being heard for the first time in months.

The next thing we know it is being discussed about how to handle Drew's math issues - only thing that is not on grade level.  Also discussing how to handle the social emotional piece since we refuse to let the psychologist for the SPED class get near Drew (another post for another day).  Then we start talking about next year and what school Drew will be going to.  Colorado has school choice. Meaning we can petion for what school Drew attends.  He could continue at his present school through 6th grade but there was no guarantee that he would be allowed to go to the JR. High with his friends at his current school.  Changes are he would have to transfer back to his home jr. high.  Our other option is to up root him one more time and put him back at his home school for 5th and 6th grade so he can transition with those students to Jr. high and have friends before that transition. I think the principal was relived when Scott and i started leaning towards moving him back to his home school. We have now made the decision to move him to his home school in the fall.  The superintendent is setting up a meeting for the new principal, me and the superintendent to start the ball rolling.  The superintendent is also ensuring that the staff will be educated in TS before Drew starts and that staff from the new school will be making visits to the current school to get to know Drew over the next couple months.

The best part?  Drew spent today in the General Ed class for the whole day and loved every minute of it.

All it took was a whole lot of FAITH TRUST AND lots of people who love that little guy and know what is best for him.  a dash of pixie dust didn't hurt either.

 

changes to diet

I am research fanatic.  I am addicted to learning.  It is like a drug for me.  I had been seeing articles about Tourette's and diet.  We had made an effort to become gluten free several years ago and we did a good job.  At some point we fell off the wagon and went back to our old ways.  I am not sure how Drew's tics were during the time we were GF.

My research has revealed that there may be a connection between many diseases and gluten.  I am also finding many reports of milk and tics.  Milk seems to increase them.  I know soy milk can cause an increase in them as well.  So we are going to try Almond Milk and see if we see a difference.  In the next couple weeks we will also revert to our life style of being GF.  Bob's Red Mill and Pamelas GF are good brands for GF.  So I will be going back to them.  We also love Eating Well Magazine for great recipes which can be altered for GF life style.

Drew has an aversion to many foods so it can be a challenge to cook for him.  He is not a veggie eater.  it is a texture thing.  He is going back to OT thru Children's in the next few weeks.  As the TS has gotten worse he has lost some fine and gross motor skills.  The schools will only give OT from an educational standpoint so all they are offering is typing skills.  He needs more.  So the school is teaching him to type and Children's will be tackling motor skills and sensory issues which have also become worse as the TS has gotten worse.

I will fight for you every day of my life.

We have had a lot of problems with Drew's school and district in the past few days.  Hell I take that back, since we moved to Colorado it has been a giant nightmare. I had another fight with them yesterday about bullying and placement for Drew (a topic for a later time) Tonight made it all worth while.

Drew:  Mom you look exhausted.

Me:  I am.

Drew:  The school?

Me: yea.  but will keep fighting for you  and for what is right everyday of my life. Because that is what I do.

Drew:  I know, that is why I love you

New Treatment for Drew

Drew has a very severe neck twitch.  It causes pain.  He has given himself whiplash several times and pulled muscles in his neck.  When we saw the neurologist at Children's in January, she gave us a new option beyond medication.  Today, Drew underwent botox injections in his neck.

Drew was a bit apprehensive.  We did find out the hard way that he is allergic to the adhesive used to hold the numbing patches in place.  That was the worst part for Drew.  But the cream did what it was supposed to.  The injections were administered without pain - all but the last one.

We were advised that the injections would not take effect today, tomorrow, or even the next day.  But hopefully by the end of the week we will see some improvement.  In two weeks we will see maximum effect.  If it works then Drew should have relief for up to three months.

We know there can be side effects and we explained them to Drew.  He decided it was worth it to at least try this.

This is just one treatment. We know not all treatments work for all patients.  All we can do at this point is wait and watch and hope there is some relief for Drew.

THE FACE OF TOURETTE'S

THIS IS THE FACE OF TOURETTE'S

THIS IS WHAT TOURETTE'S CAN DO

 

 

New Direction

Over the past year I have found my blog has lacked direction.  I have written about many things family, friends, new job, moving.  I have had very little motivation to write.  Granted it has been a hectic few months. I think I have found my direction.

If you have read many of my posts you know my youngest son suffers from Tourette Syndrome. My husband and I adopted Drew at birth.  He had a rough start and we knew from the beginning there would be challenges.  My dad often commented that though he did not know why the Cosmos lined up and some force brought Drew to me for a reason.

I have often wondered why Drew came to us.  I thought several years ago it was to be a fighter for what Drew needed.  I was right to a point.  I am Drew's mom, fighter, advocate  number one to give him love.  I am his safe place.  The one place he knows no matter what he can be who he is and let his feelings known.

I have searched for websites and blogs chronicling other mom's struggles with Tourette Syndrome, an syndrome that gets little recognition and funding for a cure or research. It is a very misunderstood neuro biological condition that is often portrayed incorrectly on TV.  When someone says Tourette's Syndrome, the first image is of someone who cusses and can't control it.  That is a small part of Tourette. It is called Coprolalia and only about 10% of those who suffer with Tourette have this condition.

Drew has a severe case of Tourette Syndrome. He tics all the time.  Even in his sleep. We are fortunate to have moved to Colorado where the Children's hospital is making progress in managing the symptoms of this disorder.

Facts about Tourette Syndrome

It affects more boys than girls
1 in 1000 have this condition
There is no cure.
It is a spectrum disorder.
OCD, Anxeity, and ADHD are co-morbid conditions. (Drew has all 3)
No two cases of Tourette are the same.

I have decided to use my blog to educate about Tourette as well as a place to vent and share our struggles, and day to day triumphs of Tourette.  My hope is that I can inspire or help just one mom.  I also hope to build a network for other parents to find a place to learn and help each other.

I recommend if  you want more information to check out Tourette Syndrome Association.

I welcome  you to our new journey.

Busy and adjusting

I have to say in many ways we are busier in Denver than we ever were in California.  We still have our family time but it is different.

Last weekend we stayed close to home because of snow but the last few days have made me go WOAH!.  Monday Drew now has Lego Club and rock climbing.  Wed we headed to Children's to meet with the Rehab Doc who will be administering the Botox treatment in a couple weeks.  a story for another post. Thursday I got to help with Drew's class Valentines party in  his Gen Ed and after that I am more convinced than ever  the school district is wrong and that the placement is so incorrect it is not funny.  We now have an advocate but that is a story for another day.  Friday Scott stayed in the City for the evening and got to spend time with people from his old company.  He had a wonderful time.  Drew and I hung out at home and watched TV.  Yesterday we had a late brunch, did some shopping and then went to our friends house for a wonderful dinner.   Today I am taking Drew swimming with a friend of mine who I have not seen since JR. HIGH.

We are still adjusting to life here and a new normal when it comes to routine.  Sometimes we have to stop our selves and say "we have been here less than 3 months and things are still shaking out"  Is some ways it feels like we have been here for a long time and this has always been home.  Maybe it is because of the Midwest feel and life style?  I know I feel more at home here.  More relaxed, more in control. Still adjusting but this feels like where I belong.

Breakfast

One of the most important things when you move to a new city is to find a new place for weekend breakfast.  We have found a place.  It is called Breakfast on Broadway.  The have a great menu.  We found it by accident last weekend.  Scott and I had dropped Drew off at a Scout event last week and decided to take some couple time and were driving down the road and saw this place.  The parking lot was pretty full so we figured it must be good.  We were right.

Drew has been having trouble eating lately.  With the weight loss, we are willing to let him eat things he normally doesn't get to eat.  This morning we went to Breakfast on Broadway and Drew had the S'more Pancakes.  Panckes with chocolate chips, chocolate syrup, marshmallow syrup and graham crackers.  He did eat more than he has in several days.  We talk to the doc tomorrow about where we go from here.

He is now having some insomnia as well.  Please keep him in your thoughts and prayers as we figure this out.

medical stuffs

Everyone who reads my blog knows about Drew and his Tourettes.  It has been a source of frustration for  him.  We had a great doctor in San Francisco who Drew loved.  Moving to Colorado meant a new doctor and building new trust.  Not something easy for Drew.

Drew and I met with Dr. C on Monday.  First thing we learned she trained under Drew's doc in San Francisco!!! As much as I liked the doc in SF I like Dr. C for other reasons.  She is younger and has embraced new techniques that might help Drew.  Week after next Drew will be getting a small amount of botox injected into  the back of his neck.  The hope and theory is that it will relax the muscles and decrease the neck tics. Drew was not too happy about the thought of shots but when asked which would be worse Tourettes or injections every 3 months that could stop the tics.  He decided the injections would not be so bad. We are also adding Magnesium to his diet as this been showing signs of helping decrease tics as well.

Dr. C also suspects from what Drew is describing that he may be having seizures again.  So next week we will be doing a sleep deprived EEG.  If that doesn't show anything than he will be admitted for several days to the epilepsy unit for observation.

He is also being evaluated for his sleep.  It has been proven that kids with Tourettes don't sleep well because their bodies don't shut down and they tic in their sleep..  This leads to an increase in behavior issues as well as decreased learning. Drew wakes up exhausted every morning no matter what time he goes to bed.

We are currently waiting for blood work to come back.  Drew has lost 10% of his body weight in the last 17 days.  That has me and everyone else pretty worried.

It appears that Drew also has ADD but we knew that.  he can't be put on meds for it because they will aggravate the tourettes.  He now carries a water bottle at all times because dehydration can increase tics.

Next week Drew will be giving a presentation to his class about having Tourette's.  They will watch this video and then do a Q&A about the condition.  I will be with him but this is his to talk about.

right now all I can do is have

Faith Trust and Pixie Dust.

Cathy

What has Drew been up to?

Yes I am back.

Wondered where I have been?  We moved from California to Colorado.  It has been an adjustment for all of us but we have been here 2 months and things are getting better.  I think.

In other news I graduate in 3 weeks.  Trying to decide about getting my Master's.  I am going to be an Aunt.

So I am back and ready to start blogging again.