A Letter That Needs To Be Read

One of my Facebook friends that also has children with Tourette Syndrome shared a post this morning that I felt was so important that it not only needed to be shared on my Facebook page, but also needed to be shared here on my blog, as well.  This post was a letter written by Richard Paul Evans, author of the Michael Vey series of books.  That letter, titled 'To the woman at church who sent me an anonymous letter', was one that brought tears to my eyes.  (Please use the link in the letter title to view the letter itself.)

Richard Paul Evans had visited a church to share the Word with those within the church.  During his visit, his tics had been quite apparent.  One of the ladies within the church took those tics as being punishment from God for Mr. Evans' sins.  We are all sinners, which is why God sent His son into the world to die for our sins - to give us forgiveness for those sins.  He does not punish us for our sins by giving us tics or other neurological conditions.

The very idea that people still believe neurological conditions can be the result of our sins is one that angers me.  Putting this idea in the heads of those who suffer from tics, seizures, etc can be damaging in so many ways.  As if knowing they are different isn't hard enough on those with these conditions, they often times deal with bullying, staring, and countless questions.  Suggesting that they are being punished for their sins is even more damaging, Those that are more prone to believing this, rather than accepting the truth that it's caused by neurological disorders, will only suffer more from their desire to be more perfect in hopes that the tics will go away.

I think that Richard Paul Evans had the perfect response to this letter.  He, like me, hurts for all of those who could fall victim to these false accusations.  I can only hope and pray that his letter has found its way to the writer of the original anonymous letter, opening her heart to the truth about the author and others with neurological disorders.  In the mean time, I pray that it has also found its way to others with similar beliefs, helping them to gain better understanding of what Tourette Syndrome really is.

EEGs for both the boys

I had to take both Monster Man and Little Man to the neurologist last month. It was time for Monster Man to be seen again, and it was at that same time that I took Little Man in to get his diagnosis, as well as to be seen for migraines. In addition to the TS and migraines, I had another concern that I had needed to discuss with the neurologist. For some time now, Monster Man has had a problem where he would quit talking mid-sentence, spacing out and completely forgetting that he was even talking. I was told by several people in a TS group I am part of that it could be TS related, but that it sounded more like absence seizures (petit mal seizures). In recent months, it had been brought to my attention that Little Man was also having spells where he would 'space out' and seem like he wasn't quite there. Given the fact that there is a close family history of epilepsy, it was a bit concerning to us. I mentioned this to the neurologist while we were at their appointment, and he scheduled both boys for EEGs the following week. After a long night of keeping them up until midnight and then waking them up at 5am (they were only allowed 5 hours of sleep prior to the testing so that they would be sleep deprived), Georgia Boy and I took them to have the EEGs performed. In our paperwork, we were told that the results would be ready through our physician in 7 to 10 business days, so we expected a long wait before finding out the results. Instead, the neurologist called us that afternoon with the results. Sure enough, both of the boys have been having absence seizures. The boys are now both adjusting to taking seizure medications, a transition that has been a little easier for Monster Man (who is used to taking medication for the TS; Little Man does not require medication for his TS at this time) than for Little Man. I think Little Man is finally adjusting, though, and we're already seeing a huge improvement in the amount of seizures we were previously seeing.

Not a spiritual thing

I have seen and heard many comments - on websites, in emails, and out in public - about Tourette Syndrome being a spiritual thing.  Some of those that are not informed think that people with Tourette Syndrome are vulnerable in their spiritual connections with God.  They either aren't strong enough to stand up against the demonic forces that are causing them to tic, have a spiritual battle going on in them, are possessed by the devil, or even worship Satan.  Yes, those are all comments that I have seen or heard.  So, for day 4 of Tourette Syndrome Awareness Month, I want to take the time to address these comments.

In researching information about Tourette Syndrome online, I ran across a forum where people were discussing those who struggle daily with TS.  In this forum, I saw some of the comments I mentioned above.  I also saw comments that stated that people with Tourette Syndrome should not be allowed to date, let alone marry and procreate.  In fact, I saw one comment that referred to children of parents with TS as being the spawn of Satan.  How sad to think that this whole group of people is so uninformed!

I saw one person, in an email, back up his comment of Tourettes being a 'spiritual thing' by stating that people with Tourette Syndrome use obscene words or gestures.  As I've mentioned previously, coprolalia (the use of such obscenities) only occurs in somewhere around 10% of all cases of Tourette Syndrome.

The truth is, Tourette Syndrome is not a spiritual thing at all.  Instead, it is a neurological disorder.  It is not caused by demons, but instead by brain impulses.  It can, in many cases, be hereditary, though this isn't always the case.  Some theories on cause (since no cause is known) show that brain abnormalities, caused by chemicals in the brain such as dopamine and serotonin.

If you hear or see someone make a comment about the spiritual well-being of a person living with Tourette Syndrome, please take the time to explain to them the truth.  Tourette Syndrome is NOT a spiritual thing, and it can be very hurtful to those who suffer from it to hear it even suggested.

Made an Appointment... and more

I know it's been a while since I've posted here.  The truth is, I didn't want to feel like I was complaining since the majority of the time lately we've been dealing with severe rage episodes.  The rage has got to be the worst thing that any of us, including Monster Man, has been dealing with in our journey through life with Tourette Syndrome.  I do want to take a few moments to catch you up on the positives, though, and to give you an update on how he's doing.

Last weekend, Monster Man took a trip with some friends from school to Tybee Island and Savannah for a competition with their school.  I was very nervous about letting him go, especially since his rage has been so bad and I wouldn't be there to control him if he got upset.  I talked with his teacher and with a father that was chaperoning, though, and they assured me that they would help make sure that his temper stayed in check.  I gave him some of his medication before the car ride down, and he took more right before the competition, just to be safe.  He did really well, and they didn't have a single problem with him during the trip.  His team came in third place, so he was very excited about how well they did.

Softball season is back in full-force.  This is Monster Man's last season on his division, and he'll be moving up to join Angel Baby on the next division in the fall.  He is so excited to be back at the fields, where he can see many of the friends he has made over the past few seasons.  Being a Christian softball league, the atmosphere at the ball fields is usually very positive, so it's a wonderful place to have all my kids, especially Monster Man, spend their time.

As I mentioned previously, his rage has gotten out of hand, and he's actually starting to become violent on top of saying horrible things, throwing things, attempting to break or actually breaking objects, and slamming doors so hard that they've come off their hinges.  He's also been having issues with short-term memory again. He'll start saying something and stop mid-sentence, forgetting that he was even talking to begin with.  We originally associated it with his head-shaking tic, since it was only around when his head-shaking tic was around, but he's been having short-term memory loss all week without the head-shaking tic being present.  He seems to be developing more tics daily, and they haven't always gone over well at school (most of his teachers are starting to be understanding, but the school still hasn't gotten his IEP or 504 in place and many teachers don't want to acknowledge the TS without the IEP).

I finally broke down today and called the neurologist to make another appointment.  I've been putting it off since we'd decided we wanted to try to avoid medication if possible.  He's reached a point, though, that we've had to come to realize that he needs more help than we can give him on our own.  His appointment isn't until June 25, but it's better than the original wait we had to see the neurologist the first time for the initial diagnosis.  I'll be counting down the days!

Fish Oil

I think I've mentioned before that my hubby has epilepsy.  About six months ago, we got to noticing that he has had an improvement even in the number of little 'spasms' he has when he first wakes up, and that the improvements have seemed to have started since he began taking fish oil pills to help lower his cholesterol.  We thought it was a coincidence, but we kind of questioned whether or not it really could've played a role in his improvements.

While I was reading "Against Medical Advice", I happened to look at the back at the list of medications and vitamins that Cory Friedman had tried in an effort to improve his tics.  I notice that one of the items on the list was fish oil.  This really sparked my curiosity.  I mean, we'd already noticed that my hubby had improved.  Was it really possible that fish oil could improve the symptoms of neurological disorders?

I got to researching online, and it looks like it really is a possibility.  The DHA from the omega-3 fatty acids are linked both to brain and eye function.  I'd known that it was recommended for women to take during pregnancy to benefit the unborn baby, but I hadn't realized that adults could just as easily benefit from it.  From what I've read, it is possible that the DHA levels - required for brain and eye function - are lower in those with neurological disorders.  Since the levels are lower, and the small amount is being split between brain and eye function, there can symptoms such as the 'spasms' my hubby has been experiencing and the tics that Monster Man experiences on a daily basis.

I picked up a bottle of gummy vitamins today.  These are supposed to be mainly the omega-3 fatty acids from fish oil.  I'm going to have Monster Man start taking them every day to see if they help him like they have his dad.  Right now, anything that won't harm him is worth a shot.