Tuesday, August 5, 2008

Stuff Again

Betsy asked if Avery was still potty trained. Very good question. Well, no more poops in the potty since the big one. And, a day or so after I did my bragging to ya'll, she wet THREE TIMES in her panties. What's up with that? She must have been having an emotional day that day. Since then, she's still doing good with the pee part. School starts for her the last week of this month. I'm just gonna pray she doesn't have to poop while she's there. I guess I'll find out the true meaning of potty trained from her teachers!

Avery saying: I was going to get on the treadmill this morning and Avery was going to fingerpaint. She asked me if I was going to work-out. I said, yes (but quickly changed my mind when I felt how sweltering hot it was!). She grabbed her fingerpaints and said proudly, "I'm going to work out my fingerpaints."

I can't believe Ian's ESY is almost over. His last day is this Thursday. I have to say, his time there has way exceeded my expectations! I've been very pleased. He'll start his last year in his PPCD program the end of this month. I don't want to think about the future.

That brings up another stress point time. Drugs. I know you've all dealt with them or the thought of them. Ian will turn 5 this year, and I know that reality says he can't concentrate or sit still unless he's sleeping....even then, it's debatable. When he was diagnosed and I started learning more about it, I was absolutely against him ever being on drugs (other than the ones that help with his sleep). I saw too many kids, FX or otherwise, who just totally lost their personality once on drugs. I can't stand the thought of this for Ian. He has such a great personality. It makes me cry to think of him any other way. However, it also makes me cry to think of him having to go through life as hyper as he is. It's like his brain just never stops being on overload. He's beyond HDHD. It hurts to think of how he must feel having to live with it. Anyway, our neurologist is a great guy, but not very knowledgeable about FX. We're going to see another one that has been recommended. I don't want him medicated by anyone who doesn't really understand his diagnoses. Truth be told as well, I don't know how long the rest of the household would stay sane if Ian doesn't get help. He's only getting bigger and stronger. Anybody have any words of wisdom for me?

Can't they just stay young?


SB said...

1. cartoon undies potty trained my kids. ALL of them. They didn't want to get the cartoon guys icky. Worth a try.

2. Don't totally rule out meds. I was in that spot when my oldest, Jonathan was a mere 3 years old. I was NO WAY, Ain't gonna happen- stubborn. The doctor calmly explained to me that it was MEDICALLY NECESSARY. He told me to look at the effects of FX as I wouild any medical issues (diabetes, heart condition...) and ask myself if I would resist meds then. It changed how I thought of it for sure. Now, Jonathan is 20 and has been on meds since he was 3. But without meds, he has no life. He cannot function at all. He hates that feeling of ickiness when he cannot control himself. All I am saying is don't rule it out. And you're right, find a doctor who knows his stuff. Dr. Mike just started doing ONLINE consultation!! You can't get a doctor who knows more than a Psych who has 2 FX kids of his own.

Betsy said...

When you see a child that has lost their personality or is too sleepy, their dose of medication is just too high. I know a lot of people are against medicating, but if it is done correctly, it can greatly improve their quality of life. Getting the right dose takes some trial and error, too, but when you hit on the right combination, it can be so wonderful!

We'll keep hoping and praying Avery as the potty training continues! Don't get discouraged...they all have relapses! :)

FXSmom said...

Matty is 12 and was on Ritalin for about 2 months when he was 4. It took away my son. BUT my pediatrician is amazing and that was all I had to tell him. We decided a different approach sans meds to see how he would do. His issues ended up just being a behavioral phase. We aren't ruling out meds though. Just like Suzanne said...it's just like diabetes or anything like that. If his FX got in the way of him being able to live then we would start working on finding a way for him to have a life. With him in the throes of puberty we know that his FX could cause us to have to medicate him. We just take it one day at a time.

Jen said...

It such a tough call. I got the same speech from a doctor when Kyle was three (the speech about treating it just like you would diabetes or heart disease---they must all go to the same school), but the thing was, Kyle wasn't hyperactive...still isn't. I felt like the doctor just wasn't listening, and he then tried to make me feel guilty for not medicating him. It was like, Fragile X, give that boy some Ritalin! I'm fortunate in that neither of the boys are hyper, and they can focus on something when it's of interest to them. I will consider something for anxiety as they get older, but I think they're doing alright as things are now. About 4 years ago, I asked Matt's teacher if she thought meds would be helpful for him. She, without hesitation, said, "Why would you want to do that?" She definitely didn't think it was something that was necessary.

Even though I don't think it is right for my kids now, I'm not trying to persuade one way or the other. Like I said, my boys aren't hyper, so medicating for that was never an issue.

Paula Fasciano said...

It's one of those milestones you hate to arrive at!
It's such a personal thing. My older one has taken various meds for focus, but now that he's 11, we're moving toward the anti-anxiety since we think that's the bigger issue now, and he's going to a new private school, and I really want him to be successful.