The sorrows of when a medication works....

Feeling a tad low right now.

DW was taking a new medication that works well in patients with TS. It was amazing and showed me my son again!!!

It has been years since I've seen his amazing, blue eyes, without the dark circles half way through the day and the exhaustion from the constant blinking. It's been ages since I've seen his beautiful smile without his face contorting from his blinking. It's been months and months since I've heard him be able to calmly finish a sentence, without chronically ticing. Even his the sniffing, that sounds so painful, like his nose may explode or a vein may rupture somewhere was so mild, that I might not even have noticed at all, except that I was looking for it. Every tic he had slowed to a crawl! A minute or more in between each one! It was like seeing him again for the first time....

Which was such a blessing, it gave me such hope a life for him, where he could function on a more normal level. As if having ADHD, OCD, SPD and hearing loss would really be "normal". Yet, if there could be a chance that he be accepted for just those things and no tics....

Well, true to any medication that seems to work for him, like Focalin for example. It was a great medication for his ADHD. It really worked well. Within a few weeks though, it aggravated his Functional Abdominal Pain. So, we switched out that med for something like his fourth ADHD medication. Every time something works and shows such promise, something in his body reacts.

When he came to me in the middle of the night the other night, and had wet his bed. I was shocked but, thought maybe the new medication had made him overly tired. When he woke the next morning and almost vomited, I knew that this could be a side effect but, he didn't actually do it. So, I thought we'll try again this morning. Late last night, he came out of his room and had not only had diarrhea but, he'd not been able to hold it til he got out of bed. He cried as we stripped his stinky clothes and redress him. This morning when he almost made it and slightly messed himself. I knew I'd have to stop the medication. Some the very rare side effects, where urinary and bowel incontinence, along with the vomitting and and dysphagia he'd told me he'd experienced before bed.

So, as he stood here shortly after lunch trying to tell me something about a toy, and he blinked, blinked, blinked, sniffed, hissed and upon exhale did his unhh unhh unhh, it was all I could do to not cry. It hurts to see him like that so very much, maybe more so because for a few days I saw him!! I saw my baby boy!!

Yet, despite how much it's disheartening, and as I type this now, the tears come down in droves, I remember that for a few days....a few days I saw my boy as he should be, without the struggles, exhaustion and pain that TS tics inflict on him. I saw able to sit still without the twitches. I saw him!! It gives me such hope to know that maybe there can be a new medication that is tolerable for him, that one day my sweet, little, angel boy will be able to have a life with less tics.