The last few nights, Quinn's sleep has been awful: multiple wake-ups between midnight and five am, loud screaming and crying. It's been very hard. His clonidine and melatonin regime, which was working quite well for a few months, seems to have become ineffective. We're calling the doctor toady. Perhaps we need to increase the dosages. We've read some pretty discouraging statistics on Fragile X Syndrome and sleep disorders. They go together at a very high rate.
On the brighter side of things, Quinn is talking a lot! He can say "watch" (as in wristwatch), both spontaneously and on demand. He also said "box" several times this morning while grabbing a cardboard box that was on the kitchen table. We also cut his hair last night and it looks much better.
Onward we go.
Bob Dylan show June 14 2026, Greek Theatre, Berkeley CA USA
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Set list:
(from: https://www.boblinks.com/061426s.html, and
https://www.setlist.fm/setlist/bob-dylan/2026/william-randolph-hearst-greek-theatre-berkele...
2 months ago
5 comments:
Maybe have him checked for an ear infection. My son does this from reflux (and also when he has an ear infection or sometimes just a stuffy nose). He's woken up most nights for the last 2 years but usually goes back to sleep on my shoulder pretty quickly. Lately mylanta before bedtime seems to be helping sleep through. I don't think this is a classic Fragile X sleep issue - usually they are just wide awake in the middle of the night.
We finally broke down and gave my son a low dose of Risperdal, after he just quit sleeping altogether. He is still not a heavy sleeper, but he does get a good night's rest on minimal medication. Good luck!
I am so excited to hear Quinn is talking more. Though I am sorry he is not sleeping well. Good Luck with his dosages.
Great to hear about all the new words! I don't think you'd get a good reaction calling the doctor toady, though.
Developmental leaps (like, say a language burst...) often coincide with sleep issues too. Hopefully it will settle down again, a lack of sleep is just MISERABLE.
FWIW, our bump up to 6mg of melatonin (from 3mg) has worked :-)
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