[ens]

Hi,

I'm new to posting but have been reading this wonderful site for a few weeks now. What a great group of mothers!

I have a 9 month old son with a never been seen genetic condition. He has a duplication on his 4th chromosome and we are just now to the point of feeling like we have a good picture of what his "issues" are. One of the issues we deal with day-to-day is his low-tone. He receives therapy once a week and is now rolling and sitting for a few seconds unassisted. His arms and legs are strong, his trunk is the last area to make improvements. We just took him to a neurologist this week to get a better understanding of his tone and to make sure there are not any additional health concerns. We received good news at the visit but I'm left a bit confused...

This neurologist said he thinks my son's muscles are strong and quick to respond and not low-tone. He said he is developmentally at about 5 months and that is consistent with what we've seen from the beginning- he's always been about two to three months delayed. This doctor believes he is simply developmentally delayed and will get the sitting and crawling when he's mature enough to put it all together.

I guess my question is- does this mean he does not have hypotonia? Can he be delayed with nothing wrong with the muscles?

Sorry for such a long note. If anyone has any thoughts, I'd greatly appreciate it. We see his PT tomorrow so I'll talk to her also.

Thank you in advance!

- Erica

 

[sbgrace]

Welcome Erica! That would be confusing to me too.

Does he seem low tone to you? Does he feel floppy when you pick him up? Has the low tone assessment been made on things apart from the missed milestones? I guess a neuro should know. But if you can ID an infant as low tone it seems to me you could correctly ID your child as low tone (or not) even if he is at a five month dev. level.

I guess I'm saying that my son was low tone regardless of his age. A child dev. delayed to a five month level and a child with low tone at a five month level would look different I assume. My kids had clearly different muscle tone at the same ages. My low tone kiddo is also dev. delayed by a 3-6 months but his tone was apparent apart from that. He never matured into a less floppy baby or a kid with good truck control.

Whether the neuro is right or not I don't know of course. But it seems like it can be determined.

Side note: hippotherapy was wonderful for my son's trunk control and strength. If that is available near you consider taking advantage.

 

[lil_stinkyfeet]

I agree with Rachelle the nuero should know but I am assuming that since he is getting PT that his PT thinks he has low tone??

Low muscle tone is actually (the amount of tension or resistance to movement in a muscle) It isn't actual muscle strength, but can often reduce the strength of a muscle.

So just saying that your son's muscles are strong doesn't necessarily mean that he does not have hypotonia.

I would call the neuro's office and ask for clarification from them as to if he is saying that he does not have hypotonia. In my experience a PT can pick up on hypotonia right away and if your pt says he has it and your neuro says he doesn't I would want to maybe get a 3rd opinion for clarification.

My son is 4 and has hypotonia that was diagnosed offically at about 9mos.
He sat at 12mos, crawled at 12mos and walked at 22mos.

Good luck to you.

 

[2bluefish]

Hmmm... I don't understand it all, but my PT told me that tone to a PT and tone to a neurologist are not the same thing. I guess to the neurologist it is a lasting diagnosis while to the PT it can be a day to day assessment. Juju has days of being tight and days of being floppy. His trunk is the hardest thing for him to control as well. I don't think it is just an issue of muscles, but of neurological processing of how to hold the body. Mood can change the situation too - when Juju cries, he can sit tall and stand for long periods of time, when he is relaxed it is more difficult.

 

[bri276]

My daughter has a rare chromosome disorder too. Did you join CDO?

http://www.chromodisorder.org/CDO/

My DD has hypotonia. She's just always been sort of floppy. It doesn't have much to do with strength. She could become a bodybuilder and would still have low tone because with her condition, it's neurological. It was always easy to see if you had her next to a typical baby- she just didn't have those springy movements, her legs would frog out a bit and she'd rather lay there than kick and punch- if I held another baby, it would feel so different. Now she's 3.5 and has a lot of gross motor delays that make it obvious.

A neurologist should really be able to instantly tell hypotonia or not. It's not a difficult diagnosis! Unless this guy doesn't usually work with infants or is really inexperienced, I would tend to believe him if he said there's no hypotonia. PTs can really vary in their credibility and qualifications.

What does the pediatrician think?

 

[LaffNowCryLater]

My ds was dx'd with hypotonia but a few years later was re-dx'd with hypertonia AKA Cerebral Palsy.