Low Tone- those with kids with low tone, come in!

[carolinagirl831]

I'm asking about this for my nephew-

My mom watches my 16 month old and my nephew (19 months), daily. She recently brought up some concerns with my nephew, and I  wonder if it's low tone?
He didn't walk until 16 months, now at 19 months, he still walks  like a new walker. He can't seem to run normally. His walking looks like he is the  giant marshmallow from ghost busters, he walks side to side not forward. I don't  know if you can picture what i mean by this description?
My dd runs, fast, and he can't seem to keep up.
His hips seem really floppy. My mom mentioned to me when she  changes his diapers, his hips just seem to flop, they don't seem tight?
Does any of this seem like low tone?
I ask because my Brother and Sister in law are pretty defensive when it comes to stuff, and he  has a doctor appointment coming up. My mom wants to know if she should  make it  a  thing that they should mention to the Dr just to look at?   He is their first and i don't think they realize anything is off, if it is...

[karinothing]

Don't pediatricians check hips? I know mine does.

[raangoli]

Aug 19, 2016 10:20:11 GMT -5 karinothing said:

Don't pediatricians check hips? I know mine does.

I was going to say the same. But there was some concern with BB and hip dysplasia, so I wasn't sure if it was standard.

I am surprised their pedi hasn't said anything. (Or maybe s/he has, but based on what you've said, they are being defensive?)

[kath16]

Honestly... I would let the dr run through their usual checks. If there is a concern, he/she will either notice it from an exam or from asking questions about milestones. My pediatrician always checks hips, watches him stand, sit, and interact.

If they are defensive anyway, and the drs appointment is soon, I would MMOB

[notlurkingatyou]

If they're defensive, it's likely because they know something is off. My son has experienced a number of developmental delays (didn't walk until 19 months and didn't really start running well or jumping until recently, he'll be 3 in November). It's been painful (at times) to see how much more advanced kids younger than my son is (like your daughter is with their son), which is probably why they aren't approachable on the matter. By seeing your daughter, it's in their face on a daily basis and I'm sure they have discussed how (or if) they want to deal with it. I'd mind your own business and encourage your mother to do the same. The only thing that has made dealing with my son's delays worse is when family has inserted themselves into the discussion, as if my husband and I were not caring, observant, and taking measures to remedy them. 

FWIW, my son has a number of symptoms of low tone (low oral motor tone resulting in delayed eating, needed ankle braces to prevent his ankles from rolling in, and has low core strength that results in him being generally pretty clumsy) and yet the neurologist did not feel like he was diagnostically hypotonic. His occupational therapist has thrown around low tone a lot, but as far as I know, a diagnosis of low tone doesn't really make much of a difference, we're still just treating the symptoms. They'll need to decide for themselves (with their child's doctor) whether he's reached a threshold where the symptoms should be treated or not. 

[mrssandro]

This is a tough one. Maybe they are defensive or maybe they don't see a issue. At least he is walking so maybe they think he will grow out of it. So how do you subtly suggest being evaluated by a physical therapist? You just can't unless you are close like that. In this scenario I would hope that Dr is making sure things are okay.

My daughter is mixed tone but has a ton of trouble with balance and coordination. It's more obvious because she is nearly two and probably won't start walking for at least a year maybe two from now. It's not really about her tone at this point. It's a sensitive subject for me. I had a lot of people in the beginning trying to give me advice. I am a lot more accepting now but some days I still cringe a little if someone even looks at my child with concern or worry.

[kitty]

DD ended up with years of PT for similar issues but it sounds like her issues were more severe than your nephew's. It took several months of PT for her to even crawl. She had to wear special bike shorts that were sewed together almost to the knee to keep her legs from just going into splits when crawling since her hips were so loose. She walked around 18 months which is technically normal but this was only after 8 months of weekly PT and she was not a confident walker for a long, long time after that. She still has worse balance and coordination than most kids her age but finally stopped falling frequently at age 4.5.

Our awesome-in-every-other-way pedi was NOT the one to catch this. It was actually her infant room teachers who pulled me aside with concerns. I asked pedi about it and she said it was up to me if I wanted her to refer to EI or just wait and see. As hard as it was to hear at the time, I am grateful to those teachers because as a FTM I had no clue. I'm fairly certain I would have picked up on it as time went on without adequate progress but I think intervening early helped us to get to where we are today where most people meeting DD for the first time would have no idea how much she struggled for years.

I think if you are at the pedi exclusively for well visits, they see the child for so little time and in such limited situations (on the exam table vs on the floor actively playing) that it is not a sure thing that they will be the first to notice these kinds of issues. I imagine it going more like: Pedi "Is nephew walking?" Parents: "Yes." Pedi "Ok great." I would have your mom mention something delicately so it is in their heads when they go to the pedi. I think since she watches nephew daily, she is in a more authoritative position to mention her concerns from a DCP perspective than just being a plain old "meddling" MIL/mom.

[krisim]

We had a great pediatrician, but I don't know if she would have caught DD1's low tone, had I not brought up a related concern that I had noticed when she was about 6 months old. Our pediatrician referred us to EI and we went through 3 years of PT and OT, though no one but her therapists probably could tell that she had low tone (very mild).  It was our OT/PT that actually gave us the diagnosis and explained the issues to us. We are so glad that we treated it early, DD now wears orthotics, but will likely outgrow the need and will never have any long-lasting issues since she was treated so early. My personal opinion is that the earlier this is caught the better!   I think the issue should be brought up delicately, but I wouldn't feel right about not saying something if this could impact a child's life. 

[abs]

DD has low tone. Our pediatrician didn't catch it. She wasn't a typical floppy baby and while DD was on the late side of meeting her milestones she was within normal range. So it just wasn't on our Pedi's radar and we didn't catch until she was 2.5 and struggling with speech.

IMO since your mom is the primary caregiver during the week it's okay that she says something. It's no different than daycare of school bringing up a developmental concern. It doesn't sound super severe and I bet PT/OT will work wonders quickly.

[Gato]

It sounds like he is stiffening his gait in order to feel more solid while walking, which IS a sign of low tone.

My DD1 didn't walk until 22 months, and that was with physical therapy since 11 months. I get not wanting to label your child as "different," but there's nothing wrong with being different. What I wouldn't want is to permanently saddle my kid with difficulties he didn't need to have just because I was too proud to seek help. I am so glad that DD1 got EI, because now she can do all the things her friends can do. She had that ability within her; it just needed a little extra nurturing.

[carolinagirl831]

We are all close, we would definitely know if there were anything going on, or if they had him checked out. They aren't just defensive about just their son, just mainly anything- it's just their personalities.
My mom said he has an Dr. appointment next week- I'm honestly not sure his pediatrician would would pick up on it unless they mentioned it. His hips are floppy but not severe. And the pediatrician may not see the way he walks or runs. To my mom, it's very obvious that he struggles  compared to my DD. So  i think it's better to have it checked out and make sure there it is something he could get help for.  
Thanks for your perspectives, I honestly think they are clueless to realize it could be an issue, so I think my mom is going to mention that they should just ask the pediatrician about his hips and his walking and running. Hopefully they will bring it up.

Thanks!

[stephm0188]

One of the biggest things we noticed at that age was how heavy he was when you held him because he didn't support his own weight at all. It was like carrying around dead weight. He also had a funny gait when walking and running, as well as speech delay.

It took a long time to get a hypotonia diagnosis for him, but PT and OT helped a lot. He's 8 now and still struggles with things like jumping rope and monkey bars, but he is pretty typical in most other areas.