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.

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