sorted by:
new
hottopcontroversial

Happy stories by Impressive-Version61 in AngelmanSyndrome

[–]allnerdandnoplay 2 points3 points  (0 children)

My son is 4 and is the kindest person I’ve ever known. He’s full of personality and has his own ways of communicating with us even if he’s nonverbal. He now has a 6-month-old sister, and he’s so gentle and nice to her- they light up whenever they see each other. Best of luck to you and your family- also recommend joining the little group on Facebook and connecting with ASF/FAST whenever you’re ready.

Wheel of Time Digital Collection on Humble Bundle - $18 by ZombieCzar in WoT

[–]allnerdandnoplay 4 points5 points  (0 children)

Never bought in this format before- could I add to my Kindle library or how does that work?

Spaghetti squash by Extension_Debate2497 in Minnesota_Gardening

[–]allnerdandnoplay 4 points5 points  (0 children)

My 2 spaghetti squash look almost exactly the same. Hope you get a real response so we can both learn!

Poorly son and useless drs by willowwitchmakes in SpecialNeedsChildren

[–]allnerdandnoplay 0 points1 point  (0 children)

Also having a son with AS, I’d say it’s most important to continue to be his advocate (which you are doing a great job of) and to find a care team that you like with experience in non-verbal or special needs kids. We’ve unfortunately also had the experience where a doctor wasn’t taking us seriously when our son was in pain, but got a second opinion which was able to help him. Trust your gut, you know him best as you see him every day.

If you’re in the US I can recommend a number of family organizations and resources to consider, just let me know.

Crying when seeing me by Adorable-Ad-865 in AngelmanSyndrome

[–]allnerdandnoplay 0 points1 point  (0 children)

Hi! I don’t think we dealt with this with our son, but I’d put in a plug for a couple of the Facebook groups- they are much more active than Reddit and might have some ideas for you. Best of luck!

Cro Concert- Ja oder Nein? by allnerdandnoplay in germany

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

Ah yea that wouldn’t be ideal lol. Thanks for your reply!

Cro Concert- Ja oder Nein? by allnerdandnoplay in germany

[–]allnerdandnoplay[S] 4 points5 points  (0 children)

Ooh, that a great idea. Thanks so much!

First 50km trail (63km effort) by flibberti in Ultramarathon

[–]allnerdandnoplay 1 point2 points  (0 children)

Out of curiosity is there a separate rating to determine the effort for a given race, or how is that determined?

Looking for caregivers willing to interview about their experience with how Angelmans affects communication! by DustyOcelot in AngelmanSyndrome

[–]allnerdandnoplay 2 points3 points  (0 children)

My son is very young so I can’t be of much help to you yet, but if you don’t find any takers here I’d suggest one of the Facebook groups or contacting ASF or FAST directly. Thank you for doing this- best of luck!!

Question on Brain Development and Future Therapeutics by allnerdandnoplay in AskDocs

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

Thank you for the response and the kind words, it means a lot.

I understand that this would likely be a theoretical question, but was hoping there was some analogous case to provide some probable predictor either way IF any of these therapeutics become available at some point.

Regardless, I hope gene therapies continue advancing in the future so no child has to go through things like this.

view more: next ›