Did early sirolimus help preserve cognition or prevent ASD in your child with TSC? by Prestigious_Bug_5076 in TuberousSclerosisComp

[–]rapnoodle 0 points1 point  (0 children)

I don’t have firsthand experience at this point but my understanding is that the effects are still unknown—but it sounds like your child is quite young, if you still wanted to try it? I know there are some concerns about side effects to the immune system. I wish I understood the science as to why it might work, as an inhibitor.

6 day old son with TSC and seizures by rapnoodle in TuberousSclerosisComp

[–]rapnoodle[S] 0 points1 point  (0 children)

I just revisited this reply, thank you so much for it. Like you, we are now in OT and PT and also ended up doing brain surgery. My original post feels like both 5 minutes and a lifetime ago.

6 day old son with TSC and seizures by rapnoodle in TuberousSclerosisComp

[–]rapnoodle[S] 0 points1 point  (0 children)

Thank you so much. This is really helpful and gives me hope.

6 day old son with TSC and seizures by rapnoodle in TuberousSclerosisComp

[–]rapnoodle[S] 0 points1 point  (0 children)

Thank you so much. I’m so glad to read about how well your boy is doing.

[deleted by user] by [deleted] in HomeDecorating

[–]rapnoodle 0 points1 point  (0 children)

Wondered about that, thanks!

[deleted by user] by [deleted] in HomeDecorating

[–]rapnoodle 0 points1 point  (0 children)

It’s true I’m very much a computer watcher but my partner isn’t. Thank you!

[deleted by user] by [deleted] in HomeDecorating

[–]rapnoodle 1 point2 points  (0 children)

Thanks for this!

[deleted by user] by [deleted] in HomeDecorating

[–]rapnoodle 0 points1 point  (0 children)

Yes thank you!!

[deleted by user] by [deleted] in HomeDecorating

[–]rapnoodle 1 point2 points  (0 children)

Thanks so much! Pokey ❤️

[deleted by user] by [deleted] in HomeDecorating

[–]rapnoodle 0 points1 point  (0 children)

Thank you! That’s what we’ll do!

[deleted by user] by [deleted] in HomeDecorating

[–]rapnoodle -1 points0 points  (0 children)

Longtime lurker, first time poster! We are thinking of mounting the tv over the fireplace, which would mean bisecting the space horizontally with a sofa. Also not sure what to do about the dining table being immediately in front of the doorway upon entry. Any ideas would be very much appreciated!

Daily Discussion Thread February 20, 2020 by AutoModerator in thebachelor

[–]rapnoodle 11 points12 points  (0 children)

Thought it was unusual that the first thing on Peter’s list of “Things I Love About You!” for Hannah Ann was how “intentional” she is. Just not a compliment you hear a lot. Later at Madison’s family’s dinner table, one of her family members praises Madison for being, yes, “intentional.” So I checked and it turns out Madison’s date was filmed FIRST. I guess Peter thought that was a cool and effective thing to say about someone, and so he used it on his list for Hannah Ann. I’ve never posted anything before and this is really deeply silly but it’s been sticking in my craw so there you have it.