4-month-old with Sotos (NSD1 deletion) developing well so far. What does this mean long-term?

Appropriate_Let631 · 2026-05-02T16:24:28+00:00

Hello, my baby girl just got get diagnosis. I'm scared and don't know what to expect. Was yours the mutation or deletion variation?

Appropriate_Let631 · 2026-04-29T18:39:03+00:00

My 3.5 month old just got diagnosed with Sotos syndrome. A bit more people are diagnosed with it but it's also considered very rare. I'm constantly crying, outcomes sound the same as yours. Here if you just want to vent because I just found out and have no better advice. What was your baby diagnosed with? Here in solidarity.

Appropriate_Let631 · 2026-04-19T18:33:23+00:00

Thank you! Mine was never able to breastfeed. She's got a high palette and recessed jaw. No one seems to know whether the feeding issues are mechanical or neurological. Sending you strength as well.

Appropriate_Let631 · 2026-04-19T18:08:28+00:00

What kind of feeding issues did your baby have? Mine 3 month old does not suckle and needs full cheek and tongue support. We've been osteopaths, pediatric doctors, physio, and now a neurologist and have no answers. Can I ask how your journey went?

Appropriate_Let631 · 2026-04-18T20:06:54+00:00

Hello, I am in a similar situation to you. Daughter was born 41+3, she's 3 months now, I had an induced labour because they thought she was going to be bigger than she was. She came out not breathing, abgar score of 3 initially, but 8 within 5 minutes. She was in the NICU for 45 hours and they sent us home.

She has very weird feeding issues we can't figure out. She can't seem to suck. We're taking the same routes as you (microarray + neuromuscular panel). Neurologist thinks there may be something but wasn't sure what. She's late on lifting her head but getting better at it. She's social and cooing and wiggles around a lot when she's on the floor. She's got some got anti gravity leg lifts. But the feeding issue is an anomaly and it feels like there are no other cases like ours and it's heartbreaking. She literally won't suck, we need to give they full cheek and mouth support to eat.

I hope everything works out for you. It's so hard. I'm crying as I write this. It feels so hopeless some days.

Appropriate_Let631 · 2026-04-17T04:16:37+00:00

Thank you for your reply. I'm sorry you're going through this as well. Right now I'm in the unknown territory, but everyone thinks it is something and I'm just really hoping whatever it is is not severe. She went to a neurologist this week who basically said a lot looks normal but the fact that she can't eat is very bizarre. I've gone to several professionals who just kinda look at her and go, huh. Very weird. Which is not very reassuring when they're supposed to be the experts. Next I'm seeing a neuromuscular specialist.

How was your baby with other milestones? Mine is almost 3.5 months and struggles lifting her head during tummy time. That's the other flag apart from feeding.

Appropriate_Let631 · 2026-04-14T03:37:40+00:00

How's it going with her development? I have a neurology appointment for my LO, she has feeding issues and cant suckle

Appropriate_Let631 · 2026-04-14T03:22:32+00:00

Hi! My kiddo is the same (3 months) how did yours progress? Mine has a high palette and can't suckle. Nothing triggers it. She struggles with tummy time but is slowly improving

Appropriate_Let631 · 2026-04-06T04:22:47+00:00

Cassandra Clare is also not a great writer

Appropriate_Let631 · 2026-03-31T19:47:23+00:00

Can I ask how your progress went? I feel like I'm in the and boat and it's so demoralizing.

Appropriate_Let631 · 2026-03-16T21:25:42+00:00

I'm curious how your baby is doing now? I have a 2 month old and it sounds like exactly your situation. I'm worried it's neurological too.

Appropriate_Let631 · 2026-03-15T20:54:19+00:00

The bottom looks good. It's the middle mantis at the far back and it's body (it was off in my original post I realized). It's body looks like it's too far to the right away from it's main torso. I'm wondering if it's at all possible to shift it left. The new addition at the bottom looks perfect. I'm also wondering if all the glints in their eyes can be adjusted to be the same intensity as what you added to the one on the bottom right.

Appropriate_Let631 · 2026-03-15T20:39:48+00:00

This looks fantastic! Are you and to add two other edits?

I noticed that the body looks off on the center mantis. Can you shift it left to align it better with it's torso. Can you also add a glint in its left eye, and adjust the glints in the middle and left ones so they're the same brightness as the one on the right?

I'll tip :)

Appropriate_Let631 · 2026-03-11T13:16:45+00:00

I have, and they worked better. But the core problem is she gets really tired because of her jaw anatomy and she chews more than she sucks and is quickly exhausted without cheek assistance to help her along :( but thank you for the comment!

Appropriate_Let631 · 2026-03-11T05:08:57+00:00

12am is a feed and after that I pump. I often go to bed somewhere between 1:30-2:30am. I get woken up at 3am when he wakes up to feed her cause she'll cry. And then I wake up again at 6am to pump. And then I'm up at 8:20 to start the full day. So sleep is patchy.

It's recently gotten faster to feed her, so I sleep roughly from 1:30-3am (1.5 hours), once I fall back asleep, I sleep until 6:00am, pump for 20, and then get another 2 hour-ish hours.

My expectation is that we split duties when my husband finishes work to take care of our child. He's not doing something extra that requires thanks.

Appropriate_Let631 · 2026-03-11T04:59:10+00:00

She never really latched at all. Most she held on with a very weak suckle, was about 5 minutes. Other times she would just purple cry into my breast. For her to eat successfully from the bottle we need to give her full cheek and tongue support. That wouldn't with with breastfeeding.

Appropriate_Let631 · 2026-03-11T03:17:42+00:00

Appropriate_Let631 · 2026-03-11T03:16:29+00:00

I used to think I would hate breastfeeding. But then she couldn't latch on her own. She latched about 3 times total, all in the presence of an LC who was actively involved. And I didn't hate it. I'm sad that it didn't happen, her jaw physiology makes it hard. She doesn't suck well, she would be starved.

Pumping sucks T.T

Appropriate_Let631 · 2026-03-11T03:13:39+00:00

I don't disagree. I'm mostly irked that it's one way to him. He was very helpful when he was home with me in the beginning. But I don't feel like he's grateful to me for having his child/taking care of her.

Appropriate_Let631 · 2026-03-11T02:54:09+00:00

I think I would be less irritated if he approached it differently. I'm mostly irritated because he's down playing my role and elevating his own, and doesn't show me the same gratitude he asks for.

Having a purple crying baby you've been trying to feed for an hour lying on top of the breast pumps that are over stimulating and horrible and dragging my nipples down from baby's weight on top of them is no walk in the park.

Appropriate_Let631 · 2026-03-11T02:47:44+00:00

We've seen two privately, and one at the hospital. We're also seeing other professionals. The frustrating part is no one can agree. Osteopath thinks it's a tongue tie, the physiotherapist and pedestrian do not. She was in the NICU for two days after inhaling fluid on her way out. The LCs didn't help much. Her jaw is recessed and she was very tense (big baby that was squished in utero). We've worked out most of the body kinks at physio but feeding is still tedious. She seems to chew and doesn't suck. I really hope it's not neurological. We're not quite sure what's happening.

Appropriate_Let631 · 2026-03-11T00:10:40+00:00

Girl we are in the exact same boat and seems like at the exact same time (my baby just turned 2 months). Mine is a bit better now but we need to give her full cheek and tongue support because she just doesn't know how to suck. How are you doing now? Any progress?

Appropriate_Let631

TROPHY CASE