if I e-mailed the doctor a link to THIS article in advance of the Friday appointment? I don’t know if I can take any more of his “let’s try x, y and z for a couple of months and re-evaluate” suggestions. After 5.5 years I think the evidence is pretty strongly in favor of “THE KID DOESN’T SLEEP.” Maybe I’ll just cry. Again.
We know your sleep deprevation is ten fold. Unfortunately Drs don’t do anything about it until it is too late. Maybe if you relay how desperate you are by sending them a copy of this article and then end it with a great big HELP from all of you, just maybe they might do something?? Hopefully
you need to let him know, too, that it’s interferring with his education. let him know that other FXS experts have prescribed clonidine. but make sure the dosage is very small — punkin only took half of a .10mg tablet at first and then later 3/4 of the tablet.
We made it a point to ask his teacher to note on his daily reports when she noticed that he was tired, it was a common notation 🙁 The Dr. works closely with the FX clinic here, he’s aware…they’re just reluctant to medicate…which I can appreciate but at the same time…the other suggestions aren’t working.
When they prescribed Clonidine for Punkin, it helped with the ADHD symptoms as well, even though he took it at night. Reluctant to medicate???? They are SLEEPING AT NIGHT!!!
I worry so about this! Melatonin has helped to get Holly to fall asleep now, but its at 10:30 or later and some days she is up by 7:00 getting little more the 8 hours, when I know she needs 10-12 I can tell a difference on an 8 vs. 10 hour day.. So much more anxious and “cry over everything” on the 8 hour day. She can’t take Clonidine till 3ish but the melatonin already made a huge difference.
For every positive there can be a negative…that’s the company line and I do agree with them. I’m glad we tried other things I just wish we’d found a solution.
The melatonin made a HUGE difference in his falling asleep and we still use it but there is just something about that 12:30 – 4:30 stretch that he just can’t seem to get through. And the fact that he can’t seem to nap, no matter how little sleep he’s getting at night, is just awful. It makes him miserable!
we tried Clonidine but our boys seem to be some of the few it has the opposite effect on.. we where basically told to deal with the sleep issues ourselevs(meaning suck it up ) my 13 yr old STILL wanders the house thru the night
oops im the JOYful homemaker LOL
I think Duhdee and I are on board for trying the clonidine now. By opposite effect do you mean more distracted and getting less sleep??? I would just cry, lol.
We’re getting so close to having to start his “official” school career…he’s still in preschool now. We want him to have the best possible chance to succeed and we want the school to give him the opportunity to do it in an integrated setting. More focused in the classroom would buy us a lot of breathing room I think.