29 m/o still not walking—HELP!

[liveetah]

Hi everyone,

I will try to keep this as brief as possible. I’m desperate to hear any thoughts or advice, no matter how anecdotal.

Long story short, our 29 month old son isn’t walking unassisted yet. He was a preemie, but was doing great until he didn’t crawl until 18M. At that point, his pediatrician recommended Early Intervention, and he’s been getting PT 2x per week.

Some background: L is the youngest of 3. We also have a daughter and a son who walked at typical ages. He spent 2 weeks in the NICU, but had no complications (brain bleeds, seizures, etc.). The NICU saw no need to do any brain imaging during his time there.

His therapists have assured us he will walk because nothing seems “wrong”, except for L having low tone and a very cautious personality. He had an MRI done, which the neurologist deemed “inconclusive” and also said that L has low tone which he should be able to overcome. So far, all genetic testing has been normal.

When L turned 2.5 and still wasn’t walking, my husband and I got a second opinion from another neurologist at the closest large city to where we live. This neurologist diagnosed L with spastic diplegic cerebral palsy.

When we told L’s group of local providers about this diagnosis, they were in disbelief. They said L has no symptoms of CP (other than the delays, of course.) He has no spastically
/rigidity and he uses both sides of his body evenly. Essentially, they said this second neurologist—who works at a very well-regarded hospital—had no idea what he was doing.

What do you guys think? I’m panicking over this lack of consensus. Has anyone ever heard of an otherwise healthy child who didn’t walk until close to 3 years old?

tl;dr: 29 month old son isn’t walking. Doctors don’t agree on whether he has CP or is simply “low tone”.

 

[katrina2017]

@liveetah I think you need a third opinion. Somebody is misdiagnosing, but how are you supposed to know who?

I would be inclined to think that the people who have seen baby the most would understand him best. But we also hear stories about years of misdiagnosis.

If you can somehow manage to see someone else, it's worth it for moving forward with the correct treatment.

 

[liveetah]

@katrina2017 I was thinking the same thing about getting more opinions, and I really appreciate your reply.

This whole ordeal has eroded my trust in the profession to some extent. It’s hard to understand how two people trained in the same field can have such divergent takes

The only thing that would make sense at this point is if a rare genetic variant turns up, which is the one thing that both doctors conceded could be the case.

 

[katrina2017]

@liveetah I just had a (non-cancerous) tumour removed. But the doctor I was seeing waited a while to send me for MRI, and thought my problems were caused for other reasons. He was/is such a lovely guy. But the way he very casually decided to send me for the MRI, it really didn't sit well with me. Like it was on a whim. I think sometimes they get used to the same causes 99% of the time, that they don't go through the other possibilities as a standard.

At the end of the day, it's your family. You push as much as you can to get adequate answers. Good luck.

 

[liveetah]

@katrina2017 I’m so sorry you had to go through with that. It’s scary to think that the MRI was practically an afterthought for your doctor. I’ve always been generally trusting of doctors, but this has been a wake up call.
Wishing you a smooth recovery and continued good health!

 

[katrina2017]

@liveetah Thank you

 

[godfavorme]

@liveetah No, I haven't heard of any kid without some sort of disability taking this long to walk. I think it's safe to say there's something impairing his mobility, the question is what.

Does he seem stiff, or floppy? Spasticity means that there are tense muscles he has trouble relaxing, whereas hypotonia is overly relaxed muscles that he has trouble tensing. Kids with hypotonia have just that, kids with CP have spasticity or a mix of spasticity and hypotonia.

In any case, regardless of his diagnosis, physical therapy is going to be your best bet. I have known people with both of the suggested diagnoses who have learned to walk unaided, though in both conditions there's generally ongoing issues with coordination and endurance that can require using a mobility device part-time. I've also known people who can't walk, and I encourage you to not see that as a failure or a tragedy. None of them are "confined" to a wheelchair, they are freed by a wheelchair.

 

[liveetah]

@godfavorme Absolutely—we’re trying to get some clarity on what the hypotonia is actually symptomatic of. FWIW, I don’t think anyone would have characterized him as a “floppy” infant (he never had the “rag doll” appearance that I’ve read about.)

His being hypotonic only came up around age 18M-2years, as he fell behind on gross motor delays. I’m sure his body is much weaker than any kid who uses his muscles to walk/run, but even now, he doesn’t strike me as floppy, per se.

What’s most confusing is that he has no spasticity whatsoever, as far as I—or anyone else—has been able to tell. Just low tone without any stiffness or rigidity. Our original neurologist said “there is no such thing as ‘hypotonic CP’” fwiw.

You are totally right from a functional standpoint, the diagnosis doesn’t matter, as long as he’s getting the PT that he needs. As a parent, I just have this innate need to know what’s going on, even if it’s ultimately irrelevant.

And thank you for your comment about the stigma that many people place on wheelchairs/walking aides. My original post likely came across as ableist, and I’m sure there are things I could have worded differently. We love L no matter what, and will do everything to give him the freedom to move, whatever that might involve.

 

[arwenn]

@liveetah Go get a third opinion even a 4th to make sure you feel comfortable
I wouldn’t just trust one person’s opinion especially since a second one’s is so different

The very best of luck - my heart does go out to you as this sounds like a stressful situation

 

[liveetah]

@arwenn Thank you so much. Many of these responses have shown me that getting at least one other opinion is crucial.

 

[cierrahopes]

@liveetah Yes! My Aunt didn’t walk until 3 years old. My mom (her sister) & my Grandmother used to joke that maybe she was just lazy and wanted to walk when she was ready. She is #3 out of 6 kids and everyone else started walking around 1 or 2 yrs old. Nothing wrong with her, she’s in her 60s now enjoying her life.

I hope this helps a bit!

 

[liveetah]

@cierrahopes This is the kind of thing I was hoping to hear (a lot) of!! Whenever I try to “research” it, the concept of any healthy child not walking beyond the age of 2 seems unheard of.

I’m trying to hold out hope that L is just lazy. Thank you so much for this!!

 

[godfavorme]

@liveetah Keep in mind that there are many older folks with mild congenital disabilities that have gone undiagnosed their whole lives. Hypotonia in particular is a condition that I've seen get missed in older generations a lot.

 

[cierrahopes]

@liveetah I hope little buddy is interested in walking on his own soon! Maybe he’ll find something enticing enough to want to walk to get. I believe my Grandmother said this about my Aunt. She started walking on her own when she was interested in something she wanted to get. Excited to see your post/happiness once he walks on his own.

 

[liveetah]

@cierrahopes Thank you so much All of us tend to just cater to him as the “baby”, so he hasn’t had a ton of incentive so far!

 

[bukiemm]

@liveetah Hi!

This was our daughter! She didn’t walk until well after she was 2 and a half. We did weekly occupational therapy and physical therapy with her, and her therapists said nothing was wrong because like yours, aside from her low tone due to not using those muscles, etc there was nothing wrong with her. We saw a pediatric neurologist at a very large hospital system and her MRI checked out fine, and the neurologist essentially said she’s fine and just being stubborn lol!

It truly seemed like she was just content crawling, rolling, or being carried everywhere and was being stubborn with walking lol! Eventually she just came around on her own and started walking. There was a chunk of time after she started walking she was super awkward and like a baby deer especially trying to run, and being honest she is still a bit clumsy .

I would get more opinions about the CP diagnosis, just in case but our daughter was the same as yours.

Side note, how is he doing cognitively? Is he advanced for his age by chance?

 

[liveetah]

@bukiemm Aww I’m so glad that your daughter ended up being ok! She sounds a lot like my son at this point. He crawls everywhere, and can do it so fast and efficiently that I don’t blame him for not wanting to walk! We’ll definitely be getting more opinions.

Cognitively, I can’t say in good faith that he’s “advanced” (I wish I could say that the reason he’s not walking is because he’s been reading novels all day instead, ha.) He’s about average as far as I can tell.

 

[cosmic6942]

@liveetah I do think that the local providers may be inclined to think the second doctor is wrong for two reasons (and it may not even be conscious): one, they don’t want to have misdiagnosed your son because they’re afraid you’d pursue some type of legal or professional consequences for them. That’s a fear that providers generally have to manage in most interactions. Second, it’s just hard to see things differently once you’ve decided in your mind that one thing is true. It’s very hard to be convinced you could have been very wrong about a patient for a long time.

Now I don’t mean that the newer doctor is necessarily correct, but the older providers do have incentives to view him as incorrect and I don’t see him as having any incentives for his diagnosis. He is coming in with no preconceived ideas formed. Most second opinions do wind up confirming the initial diagnosis. But he saw something that for whatever reason made him think differently, and I’d take that seriously.

 

[liveetah]

@cosmic6942 This is a really good point. I’m going to seek out other opinions ASAP.

 

[figgs]

@liveetah Maybe I can offer some thoughts as my daughter has very mild cerebral palsy. She fully walked closer to two yo. She is now 3 and a half and isn’t considered delayed anymore (although she is stronger on one side). It’s just to tell you how mild it is. Still, multiple doctors, PT and OT can see that she had and still has hypotonia and spasticity. I would consult another doctor to confirm. It seems strange to me that two doctors could have such different views.