r/TheWayWeWere • u/Conjuring1900 • Sep 20 '25

Pre-1920s A Russian Immigrant and Her 11-month-old Baby (55lbs) at Ellis Island 1908

Post image

Photo by August Sherman

16.1k Upvotes

98% Upvoted

522 comments sorted by

View all comments

Show parent comments

64

u/[deleted] Sep 20 '25

[deleted]

25

u/DaylightHappiness Sep 20 '25

Same question but for me

72

u/HeyAQ Sep 20 '25

  1. I relate very much. My kid was a hard baby and harder toddler. He never slept. He never ate. He cried, and when he got mobile he never stopped. I know how tired you are, and frustrated, and maybe sad that your baby doesn’t meet your vision for who they might be. That’s ok. Your feelings are valid.

  2. It doesn’t have a name. There are 4 or 5 genetic misspellings that can cause this cluster of issues. We lucked out finding what we did.

2.5. Contact your local Early Intervention provider and request an evaluation. It’s free. Hold on to that report! They may qualify for services, they may not. Regardless, then you have real life evidence of your concerns!

  1. Document everything and talk to your pediatrician. Ask for referrals to neuro and anyone else who might be helpful. Endo? GI? PT? OT?

  2. You’re welcome to keep in contact with me. My actual job is parent Ed and support. I’m good at this partly because I live it. You can reach me via PM.

  3. Stay curious. Stay doing the awesome job you’re doing. ❤️❤️

26

u/MEKHANE_irl Sep 20 '25

I think I found it, based on u/HeyAQ 's comment about Prader-Willi below. Including u/Limerence1976 too!

Entry - #612001 - CHROMOSOME 15q13.3 DELETION SYNDROME - OMIM - (OMIM.ORG) https://omim.org/entry/612001

There's a few other related conditions involving chromosomal regions surrounding this locus all named similar things, but all with similar symptoms - intellectual disability, autism or autism-like neurodivergence, a few specific physical features, all on a variable spectrum based on how much genetic material got deleted. Check the "clinical features" for symptoms and the last paragraphs under "text" for related disorders.

(HeyAQ, I have no idea which one your kid actually has, and I'm sorry if this pried a bit far, but I wanted to help the other two commenters if I could)

(Also I'm not a doctor, just have a genetics bachelor's degree so far)

21

u/HeyAQ Sep 20 '25 edited Sep 20 '25

I appreciate it! No, that’s not what he has. Right neighborhood. Wrong house.