A little disappointed/A little relieved

Monster Man apparently didn't qualify for the medical research study we were trying to get him into. Since we went into the screening with mixed emotions, I guess that ended up being a good thing. As parents, we really wanted to get him the help that he needs, but we also didn't want to turn our son into a 'human guinea pig'. We were kind of afraid of what side effects he might experience, and that was our biggest concern with it. Monster Man himself had such mixed emotions. On one hand, he wanted to get rid of the anxiety; on the other hand, he was afraid that he'd lose the tics that help to make him who he is. Of course, the money involved in doing the research (he was going to get some to spend and the rest was going to go into savings for him) had dollar signs in his eyes, making him a little more willing to take part in the study than we were. Once he got through the initial upset of his first blood test, he pointed to the vein on his arm, saying "this is my money maker", and asked when he could go back. I told him he needed to think about it more, just like we did. The decision was made for us, instead, and we never received a call to go in for the first treatment.

Knowing now that he isn't getting called back has given us some mixed feelings, just as the initial screening did. Now, we're a little disappointed that we weren't able to get him the treatment that could possibly have helped him. We're also a little relieved to know that we won't have to turn him into a 'human guinea pig' in order to get the treatment.

What makes him special

I think that Monster Man benefited from the several months that passed between the time that we first started to suspect Tourette Syndrome and the time that he was actually diagnosed. It gave him a lot of time to learn about TS and to get comfortable with the diagnosis. By the time that the doctor looked at me and said "He does have Tourette Syndrome", Monster Man and I were both able to just reply with "okay." There was no shock, no upset. In fact, we were more relieved. We were relieved to have an official diagnosis, to know that we were for sure dealing with what we'd thought we were dealing with. We were prepared, and we could face this challenge head-on.

Over the past few days, we've been discussing the medical research study that Monster Man may have the opportunity to become involved in. We talked about the benefits, as well as the risks. Believe it or not, Monster Man actually expressed that he was concerned that he'd lose his tics. He has told us, on more than one occasion, that the tics are part of what makes him special. He likes being different, having something that sets him apart from the other kids. His biggest concern, as is ours, is the level of anxiety he deals with on pretty much a daily basis. He wants something that will help take the anxiety away from him, and he's okay if the medication limits the number of tics, but he wants to keep on tic-ing.

I'm really impressed with how well Monster Man has faced this challenge!

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.

Possible treatment option

Since the kids' current insurance will not cover Tourette Syndrome, I have been looking for an alternative to help us get Monster Man the help that he needs. I recently ran across a medical research study that is being done that will give him the medication he needs, the therapy he needs, and will pay us for time and travel. I'm not completely convinced that I want to go the medication route with him, but we go tomorrow to discuss the study further and to find out if he qualifies. I know we will be asked a list of questions, but I am going in with a list of my own. I want to make sure that the medication is not going to end up causing him further problem, and that this is really the best solution for him.

At first, I was very relieved to find that we might possibly have found a solution to the problems with getting him treatment. However, I am really starting to get nervous about the whole thing. Is this really what is best for him? Is this going to harm him in any way? Is this going to help him at least get back a portion of the happiness that he had before, when he wasn't plagued by anxiety? I am praying to God that I will know what is the best answer this tomorrow.