29 m/o still not walking—HELP!

[liveetah]

@figgs Your daughter sounds amazing. I realize that CP- especially in its milder forms- is by no means a horrible thing, and I hope I didn’t say anything to imply otherwise My worry isn’t CP per se, but the confusion of not knowing what’s going on.

We’ll definitely be getting more opinions.

 

[figgs]

@liveetah No problem, you didn’t say anything wrong, don’t worry.

 

[topten20082008]

@liveetah Cerebral palsy isn’t straight forward to diagnosis. It’s not usually done in one visit and often kids are labeled “high risk for cerebral palsy” for a bit while being monitored. Do you have any pediatric physical medicine and rehabilitation (PM&R) specialists in your area? Often peds PM&R manage cerebral palsy rather than neurology. Might be worth another evaluation by PM&R to see what they think.

 

[liveetah]

@topten20082008 Interesting! I’m not sure and will look into that. We might not have any that are very close by because it’s never been mentioned to me before. Appreciate the advice!

 

[chefmarybeth]

@liveetah My sister took a long time to walk (I can’t remember exact time but certainly more than 18mo, which is the time they start to suspect something is up). Turns out she has spina bifida occulta. I think it turned up on a hip X-ray, where they were trying to see if there were any hip abnormalities preventing her from walking

 

[liveetah]

@chefmarybeth I hope your sister is doing ok. They’ve “checked” L’s hips, but only in a superficial way (no x-rays, as far I know). I will ask that further-thank you!

 

[chefmarybeth]

@liveetah Oh yep, she’s all grown and doing good! She eventually learned to walk, though balance and coordination aren’t her strength. Definitely ask for an X-ray! My own kiddo had hip dysplasia, and has had plenty of hip X-rays as a result. While I’m sure you kiddo will walk eventually on their own timeline, having some answers to explain the delay will help you target solutions and give some peace of mind. Hope you get answers soon!

 

[scottbes]

@liveetah My 32 weeker was a bottom shuffler and was also diagnosed with low tone. All gross motor skills were delayed. Didn’t pull to stand until 18 months and didn’t take first steps until 2 years - full walking with confidence took another good few weeks. He needed orthopedic little boots that supported his ankles, they made a big difference, that and physio. What does your physio think about the second opinion of CP, out of interest? I was also a little concerned about it but it was the physio that reassured me as they see so many kids. I would also seek another couple of opinions OP. It’s such a stressful time

 

[liveetah]

@scottbes Yes! I should have mentioned that L has been wearing SMO’s for the last couple months. While they haven’t caused any miracles, he definitely seems more stable and confident when he has them on.

I think that PT’s are reluctant to question doctors’ diagnoses because it’s “way above their pay grade.” But I had asked both of them about the possibility of CP before the diagnosis. They both said they’ve worked with tons of kids with CP, and that L definitely doesn’t have it/is not manifesting any clinical signs of it. It really is crazy!!

Fortunately, the PTs would be doing the same exercises regardless of what the diagnosis is, so it doesn’t really “matter” in any practical sense.

 

[sinunderfoot]

@liveetah Hello! My daughter isn’t walking yet at 25 months. She can walk if we hold her hand but not on her own.

We do lots of PT. Like 4x a week.

She does have a rare condition. Have you done WES or WGS genetic testing? Does your kid have any other delays?

-from a mom that gets it

 

[scottbrandon505]

@liveetah Wow im so glad i found your post! Our daughter is 2 in a couple of weeks and she still isnt walking. She wasnt prem, but she aspirated meconium at birth and had to be on oxygen for 7 weeks.

She has only started crawling, pulling to stand, and cruising furniture within the last 2 months. She sees a Neurodevelopmental Therapist (who has been AMAZING) and we have done a number of tests, all of which so far have come back clear, we are awaiting an MRI on her spine, brain, and central airway (she has a minor airway issue). The MRI was actually ordered by a Sleep Specialist she saw as she was concerned about just how far behind she is with gross motor skills (thank goodness for her).

As i mentioned, her therapist has been so amazing, she has really improved since we started seeing her. She can't see that there would be any neurological problem as she is right on track with her speech and fine motor skills. She believes it is due to low tone, for what reason? We are yet to figure that out. We think she still has a way to go before she starts walking, but her confidence is growing every day. She has a walking frame (which she still isnt sure about), and we have been referred to have her fitted for ankle splints.

Reading all of these comments has given me a lot of reassurance, so i thank you for your post! It has been such a stressful time, and i think i am very much in the same boat as you, both me and my husband agree there has to be SOMETHING causing this, we dont accept that she is simply lazy, we can see how determined she is to move and play with her sister, we just have to figure out how to get her there.

Sorry to unload on your post! That ended up being much more than i intended. I hope your little one makes some great progress in the near future, how ever that may be!