I came to an upsetting decision

I had to come to a decision over the weekend that has been kind of upsetting for me.  I have tried, up until now, to keep Monster Man off any medications for his Tourettes.  I know so many people have benefited from them, but the list of side effects and the whole process of finding which one will work best for my child just scares me.  I've heard horror stories about what the wrong medications can do (making symptoms worse instead of better, making kids seem like zombies, extreme weight gain...) and I didn't want to see Monster Man possibly go through those experiences.  I had debated at one time, trying to get him into a study before I'd heard these horror stories, and I felt like we'd dodged a bullet when the study didn't work out.  It was so upsetting for me to realize that I cannot help my son without the help of these medications.  I felt like I had failed my child, and it broke my heart to know that I couldn't help make him better on my own.

Friday, Monster Man had the worst rage episode he'd ever had.  This time, he got violent with it.  He'd never done more than an attempt to hit once or twice in his rage episodes previously, but this time he actually pinned down his little brother, grabbing his shoulders and shaking him until I pulled him off of Little Man.  When Little Man ran to my room to hide, and Angel Baby stepped between the two boys in an attempt to protect the youngest, Monster Man knocked her down and starting squeezing her as hard as he could with his hands.  I had to pull him off of her and have Angel Baby lock herself and Little Man in my room until I was able to get Monster Man calmed down.  For nearly 45 minutes, I watched as my son struggled to get himself under control, an evil look crossing over his face.  For nearly 45 minutes, I listened as my son yelled how much he hated us and how he felt like we hated him, too.  When it was all over, Monster Man cried along with me, scared of his own actions.  He wasn't even aware of everything that had transpired over the previous 45 minutes, and was terrified to learn that he'd tried to hurt his brother and sister.  "What if I'd hurt them really bad?" he cried.

Listening to my son sob as he came to the realization that he'd said and done such horrible things, as he repeated over and over how much he truly loves his family, was enough for me to finally give in and make that decision to finally get him on the medication he needs to hopefully put him in more control of his emotions, where he can finally fend off these horrible rage episodes.

So now I've begun this new journey... one filled with researching for the best doctors, the best medicines, the best therapies... one that I hope will finally bring my son some peace.

A Little Control

After a rage-filled night at the ball park on Friday night, I was beginning to get a little desperate to help Monster Man find a way to control the rage.  Since I coach his team, I have to be at the ball fields for every game.  Since my hubby is working long hours, Monster Man has to be at the fields with me.  And since softball is one of the few things he looks forward to all week, Monster Man does not sit out at the games.  There is no leaving him home when he's had a bad day, no having him 'sit one out'.  I knew I had to find a way to help him have a calmer day at the ball park on Saturday.

I think I've mentioned before that the kids' current insurance will not cover anything for Tourette Syndrome.  I cannot get him the additional testing he needs for school, the therapy he needs to help him learn to control certain behaviors, or the medications he needs to help with the anxiety.  His pediatrician had previously prescribed something very mild that is similar to a stronger form of Benadryl.  In fact, Angel Baby has the same prescription for when she has allergic reactions.  In Monster Man's case, the medicine is supposed to be used to help mellow him out when his anxiety starts up.  We had never given it to him before because I'd never seemed to have it with me in cases when he ended up needing it, and I've had to talk him through controlling his breathing to help calm him down when I couldn't easily remove him from the situation.  I wasn't really sure how well the medication worked, but I decided that if it was supposed to help calm him down when the anxiety attacked, maybe it would help with the rage.

Before heading to the fields on Saturday morning, I gave him a dose of the medicine.  Within 30 minutes, he actually seemed happier than he had in days.  He was laughing and telling jokes with his sister, rather than yelling at her every time she even looked his direction (the way he had been for over a week).  When we first got to the fields, he wanted to love on me and kept giving me hugs rather than glaring at me and yelling over every little thing that didn't go his way.  During his game, he only had two minor setbacks, nothing compared to the experiences he'd had a week earlier.  He was able to calm down much quicker and to get back under control.  In fact, he told me that he felt more in control of his emotions than he had in a long time.

This particular medicine is not going to be a daily thing for him.  It is still going to just be used on days when he needs more help controlling his rage.  It now has a home in my purse, where I can easily find it and distribute it when he's starting to have a meltdown (hopefully before he goes in full rage mode).  It isn't a long-term solution, but I know it's there if we need it.  It's comforting to know that we have finally found something to help Monster Man for now.

Possible treatment option - Update

So we went to find out about the medical research study, and so far it sounds like it might be a good thing. We went ahead and had the initial screening done yesterday, checking to make sure he qualifies. We're supposed to hear something back in about a week to get everything set up for Monster Man to start this study.

We're still researching a little before we make a definite decision, and that (of course) also depends on if he qualifies or not. We are asking around about the medicine being used in the study, trying to find out who has had experience using it, what kinds of side effects they have had, etc. We really want to make sure that this is the best thing for Monster Man. We don't want to head into this seeing free medication and a little extra cash, but instead want to know if this is the best solution for him. We want him to be happy, and we want him to stay healthy. We don't want to put our child at risk, and we're hoping to find a solution that puts his best interest first.

Like I said, we are really leaning toward giving it a try. The people that I've talked to with experience with this medication have all, for the most part, been positive. No one has complained of the side effects, and only one has said that they didn't really notice a difference. The feedback I've received thus far has been very helpful. The information I've been given, combined with prayer, will help me to make the best decision for my son.