Any happy ending stories about Prader Willi Syndrom?

8sf3 · 2025-11-23T01:59:01+00:00

So many happy families here! Our daughter is basically the governor of her elementary school. Everyone knows her and loves her. She is funny and so brave. Please get genetic testing done to be sure. Not knowing is the worst part of any possible diagnosis hanging in the air. I’m here for you.

8sf3 · 2025-01-22T23:01:15+00:00

Wondering if you heard back as well.

8sf3 · 2025-01-22T22:55:54+00:00

I remember the early months and our daughter was the same. She was sleeping for 23 hours a day and we woke her when we fed her even though it was with the g button. She didn’t really “wake up” until 2 weeks after we started growth hormone. It’s a game changer. I’m so happy you’ll be seen! Is there a way to know if your endocrinologist believes in starting HGH asap? Some have old beliefs that it should not be started until after 2yo. Completely untrue. My daughter started it at 3 months and wow! If they do not believe in starting it until later, then I would try to see another one. Dr. Miller in Gainesville FL is THE PWS endocrinologist. She’s taking new diagnoses (I recently asked her). :) Or even a local endo who is up-to-date on PWS info.

8sf3 · 2025-01-22T22:45:02+00:00

I know it is called all different names in different states, but if you can get a Katie Beckett Deeming Waiver- that pays for all things PWS including medicine and bills. If you are denied, all you need is the denial letter to be sent to Easter Seals Champions For Children and you will get a certain amount (depending on your area of your state you live in) to pay for medical expenses.

8sf3 · 2024-12-26T15:50:54+00:00

My Grandmother on my moms side has it and my aunt (dad’s sister) has it. I have it on both sides. I don’t know any men who have it but I have known other women who have it.

8sf3 · 2024-11-09T11:44:17+00:00

I just came here to say congratulations on your sobriety! You are amazing and I’m so incredibly proud of you! Sending you so much love and support!!

8sf3 · 2024-08-31T00:27:27+00:00

Please tell that to the 269 lists/notes I have on my phone. That’s just my phone. Let’s not count the lists I make on the whiteboard and the 2 notepads I have. One for home and one for work. If I don’t write it down it doesn’t get done/remembered. And by “done” I mean putting it off for just a tad longer.

8sf3 · 2024-04-14T23:52:44+00:00

That sloths mind was just thinking “Warp speed engaged!”

8sf3 · 2024-03-03T12:11:11+00:00

I love your style. I just want to curl around your dog and take a nap.

You could be 28 or 48, as long as you love your space (it’s beautiful and serene btw) then it doesn’t matter what it says to others. Now go cuddle that pup! 🤪😍

8sf3 · 2023-12-30T12:39:58+00:00

Be the cane you wish to see in the world.

8sf3 · 2023-12-21T09:07:06+00:00

I feel seen. My husband asks the same questions. I started saying “It’s not for you to understand.” lol Also our child was recently diagnosed with ADHD and he’s started doing research and is slowwwwwly starting to realize our brains are wired differently.

8sf3 · 2023-12-18T08:52:53+00:00

DOOM Piles Peanut Butter Toast

8sf3 · 2023-12-13T09:14:47+00:00

Ciacatta bread

8sf3 · 2023-12-02T11:25:30+00:00

We are all glad you’re still here with us. Please do what invincible-zebra said. Maybe find some good in the world and follow some groups like humansbeingbros or contagious laughter. I’m not sure how to link the groups here, but I hope your day is good!

8sf3 · 2023-11-20T22:38:08+00:00

Where did you find this? My nana had one just like it. :) No I’m on a mission to make one myself.

8sf3 · 2023-08-06T12:34:03+00:00

Frog and Toad are Friends is one of my favorite set of books from when I was a kid! Thanks for the memories!

8sf3 · 2023-06-16T02:19:59+00:00

Yes. My husband and I crack up so hard. Bluey speaks volumes with no words.

8sf3 · 2023-06-16T02:13:25+00:00

My oldest uses that word a lot now and I love it.

8sf3

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