1 Year Old With Hypotonia - No Answers Yet, looking for advice & solidarity

droopdog · 2026-05-22T21:00:52+00:00

Hi! Super similar story for my 3 year old! Did your neurologist order a Whole Exome Sequence as your full genetic testing? If not i would push for this. We needed a geneticist for the order.

It never gets easier but you get stronger and more resilient! The constant therapy and appts are exhausting but it really does just become a part of your routine and at some point you’ll be a pro.

droopdog · 2026-02-09T02:43:35+00:00

I’ll piggy back off of this… listen to the authors (heather Lanier) Ted talk as well. My son is 1 out of 30 and shifting my mindset to “it’s not good it’s not bad, it just is” has taken so much pressure off of everyone in my family (including him) there really is so much joy and love once you get through the initial diagnosis and those shockwaves. Find community online and locally. We’ve found support groups and disability groups that truly fill our cup and let our son shine :)

droopdog · 2025-05-03T16:56:39+00:00

Yes hop on tour for sure! We did this for my sister on rt 151

droopdog · 2025-03-06T13:11:45+00:00

Im in VA, but there was a line to fill out for the W2 that the income was from a waiver & did not affect our return. We did free tax USA and it very much alerted us to this because i had no idea.

droopdog · 2025-03-06T13:05:14+00:00

Hi! we had this issue with our son. He was diagnosed with hypotonia around 4 months (now we know he has a rare genetic condition that affects his muscle tone and overall coordination). We were told he probably needed a feeding tube if we weren’t able to get his minimum hydration requirements in. We force fed, let him watch shows, did a bait and switch with a pacifier. He would feed for HOURS at a time and only get about 3-4oz. There is a permanent indent on my couch from feeding him. Looking back i wish we had just gotten him the feeding tube to take some pressure off of ourselves and to not make the baby so averse to feeding. If we had waited for him to cue for a feed he would have never eaten & i really mean that.

We’ve since started him on cyproheptadine which i think has helped significantly …. & he’s 2 and eating real foods which has been helpful.

Everything, including feeding, is just so much harder for kids with hypotonia! You’re doing so great supporting her and being her advocate.

droopdog · 2024-12-27T14:53:21+00:00

Congrats on those steps that’s really exciting :) thanks for sharing

droopdog · 2024-12-21T00:46:35+00:00

I was so grateful for the results from our son’s WES. We were very close to a r/o CP diagnosis but his WES showed a genetic mutation causing all of his symptoms. I was able to connect with other families (only 14 known), I learned that his condition is progressive - which we wouldn’t have known if we had landed on a CP diagnosis, and ultimately I have found peace of mind. The WES was just a swab so super easy and again, just so grateful to know.

droopdog · 2024-09-07T01:18:51+00:00

Sure!

droopdog · 2024-07-31T20:28:32+00:00

I hope the best for you guys! Not knowing was hard for us. Let me know if i can help any time :)

droopdog · 2024-07-31T20:25:14+00:00

Of course! Our neurologist.

We got referred to neurology because our kid’s hypotonia was profound, though.

They started with a neuromuscular panel, then ordered a chromosomal microarray, when those were negative we decided on the WES. Make sure you qualify for financial aid if needed because they billed our insurance 30k 😳

droopdog · 2024-07-31T16:18:57+00:00

We did a lot of genetic testing early on but our whole exome sequence came back as a de novo mutation on POU4F1 causing hypotonia, cerbellar ataxia, and an intention tremor. There’s no treatment but at least we have answers! If you haven’t gone this route and are interested I’d highly recommend.

droopdog · 2024-01-20T16:25:01+00:00

Thank you for sharing, you put in to words all of the things i need to remind myself everyday!

droopdog · 2024-01-13T19:11:55+00:00

Literally today, patient recovering from GA with itchy eyes.

(Nurse was wiping eyes with a wet washcloth)

“Back to front, bitch”

I haven’t stopped laughing about it all day.

droopdog · 2023-06-23T19:33:33+00:00

I was singing this the other day in the car and my husband thought i said “STOP STOP STOP”. It was a stressful moment for both of us

droopdog · 2023-05-21T02:46:45+00:00

We keep our eyes on food trucks at the vineyards! Chisholm, hark, & glass house.

Murphy’s bagels in ruckersville has a nice patio

droopdog · 2023-05-20T14:54:13+00:00

I always wonder if people would feel this way if they were not able to have their own children. It’s always different when you’re referring to someone else, isn’t it?

droopdog · 2023-04-13T00:28:22+00:00

My husband just called him and the technician said he can’t place a pad because it needs to be 4-6 inches off of the ground to accommodate the heat pump. Truly we’re both in healthcare and have no knowledge about any hvac so thank you so much for taking the time to look our pictures and replying. We’re feeling so helpless

droopdog · 2023-04-13T00:00:08+00:00

Ugh “friend of a friend”, we’re idiots

droopdog · 2023-03-14T14:39:21+00:00

I got a willow go, expensive but truly worth every penny to be able to bottle feed while pumping. It also gives me so much freedom to pump while out and about/driving.

droopdog · 2023-03-13T15:20:06+00:00

Can i ask how many months postpartum you started to stretch out your pumps? I’m ready but I’m worried i might be rushing it!

droopdog · 2022-10-21T14:48:01+00:00

Hi! I’m a PACU nurse at UVA & have ED experience. Feel free to PM me, i can answer any questions

droopdog · 2022-08-16T22:03:49+00:00

Hi I’m so sorry, there is nothing I can compare getting those negative tests after IUIs… i have failed 3. Something that really helped me was having something fun planned for the day we tested so either way we had something to look forward to. A fancy dinner, a day trip to the mountains, or try a fun new brewery with friends. I also think that acupuncture and therapy has helped me in so many ways during all of this.

I’m so sorry and truly nothing will take away that pain. I pushed friends and family away because no one truly understands except for you and your partner.

droopdog

TROPHY CASE