was wondering if any of your little ones had this; we had a group called Infants & Toddlers come to our home today to evaluate Linda-Marie since she was born 5 weeks early. A nurse got down on the floor with her and played with some toys and said that for most of the things she was doing, she was rated at about a 5 month old level which is fine since she was early. She also said that her tone was decreased, when put in a sitting position, if her arms are in front of her she will sit for awhile but otherwise just bends at the waist until her head touches the floor. A physical therapist from this place is supposed to call us to come take a look at her. I've been reading about decreased tone and some of it sounds like her, her head will tip forward sometimes but she does not feel 'floppy' when picked up, and when held over the floor, she will 'stand up'. Guess I just need to know if this is something she has had since birth or did it happen afterwards?

I don't know anything about decreased tone. Just wanted to say how beautiful Linda-Marie is :-)

We deal with low muscle tone, but I've never heard about 'decreased' muscle tone before.

Janette; I supposed decreased and low tone are about the same thing. would you mind telling me how and what age your child was diagnosed with this and what steps you took to improve it. And do you know what caused it? one of the things i've read is children with this don't feed well, now Linda-Marie can suck down a bottle like a champ but when she was first born she took forever to eat, didn't quite have the suck & swallow thing down yet. Now, I don't know if thats because she was a bit early or what. sorry for all the questions, but I'm sure any light you can shed will be helpful.

I have no experience with this, Shanna, but I noticed your new ticker and I wanted to say CONGRATULATIONS on your pregnancy!

Alex has low tone also known as hypotonia. He wasn't diagnosed at birth either. His was first noticed at about 2 months when he was having difficulty raising his head etc. He did always feel floppy when you picked him up. There are differing severities of hypotonia. It can either be mild, moderate, severe or anywhere in between. Our neurologist explained that low tone can either come from muscle problems or from brain differences. In Alex's case he had his muscles checked with a muscle biopsy. The results were normal indicating that even though his muscles are normal, the brain's control over the muscles is different. From what I know, the good news is that low tone usually improves with time and I've seen that with Alex. A lot of low tone babies can have reflux because if their body is floppy on the outside, it can also be floppy on the inside and the muscles that are used for digestion aren't working properly.

This is a big message. Since Alex was diagnosed with hypononia we have been to a number of doctors and therapists. I think Alex had it since birth because when he came out he had a very weak cry and somewhat floppy limbs.

I believe that Shae-Lynne also had low muscle tone. But I don't know what they mean by that b/c she always seemed strong to me. She walked very young, so sorry I don't understand it either. I'll ask Roni about it.

James wasn't dx with his low muscle tone until about 9 months old, but it was there way before that. As some therapist explained it to us (putting it simply) is that a child can be strong, but have low muscle tone. Simply put is (in James' case) his muscles weren't reacting like they should. An example would be if you were to fall you would catch yourself, your muscles would react... well James' didn't. He would fall all the time, he couldn't sit up unless supported, and he was just a little floppy. But was he strong... there were times he would about come out of my arms trying to push away from me.

James started PT in January and was discharged by March. James was behind on crawling, sitting, and standing, but now at 15 months he is walking all over the place and now even trying to run after his sister.

Most of his low tone was his upper body and face. He still has a little in his face, but we have seen some improvement over the last couple of months. The therapists still have us doing lots of exercises to work on this. As for what causes it... we were told in James' case it was just one of those things. He just seemed to have a little neurological disconnect. As for your daughter, it may have been there since birth, but just not obvious. I know for us we didn't see it until James started moving around and getting more upright.

As for feeding, James never had a problem with sucking and has always nursed/taken a bottle just fine. He just tends to have more of just a droopy mouth (his mouth is always open and he is drooling...) Good luck with the PT evaluation and keep us posted.

Thinking back on her, I believe this is something she had since birth; shes always been very thin, especially her arms and legs although her legs have begun to get thicker and she is feeling a bit heavier. She did have reflux after she was born, I figured it was just because she came early. Despite this, she is a strong baby, she will push up to a standing position while being held, she reaches for everything, rolls like crazy, babbles a lot and blows raspberries. so in her case, I'm thinking its only moderate, I just wonder why and if her doctor will want her to go for more tests for this; I hope not, shes been to several specialists already and has to have blood work done every 3 months. I've been wondering if its somehow my fault, if its something I did during her pregnancy (never smoke or drink), I mean no one else in the family has this that I can think of and what if the new baby has it?

would you mind telling me how and what age your child was diagnosed with this
We first heard that term in relation to Evan from his physiotherapist, which would have been when he was a year old and still not doing much of anything physically.

and what steps you took to improve it.
Physiotherapy, occupational therapy, speech therapy and feeding therapy in order to meet all of his needs.

And do you know what caused it?
Absolutely no clue. He's even an enigma to the neurologist and to the geneticist. I'm sure that the poor nutrition from lack of eating and from constant vomiting for the first 2 years of his life didn't help though.

one of the things i've read is children with this don't feed well, now Linda-Marie can suck down a bottle like a champ but when she was first born she took forever to eat, didn't quite have the suck & swallow thing down yet. Now, I don't know if thats because she was a bit early or what. sorry for all the questions, but I'm sure any light you can shed will be helpful.
Evan was born full term, and still couldn't suck. He has low muscle tone in his mouth area, which also affects his eating and his speech.

Sam had mild hypotonia as well. The ped, and neurologist believe that it is from his lack of eating. If he isn't getting enough nutrition he won't want to move about and thus won't get good muscle tone. With the help of OT and PT we have seen a huge improvement. In fact he has graduated from both now. He was also born early so this may be part of it, but I am not sure.

Popping in after a long absence, joining the conversation late! My doctor has used the terms low tone and hypotonia interchangably. My little one was diagnosed as low tone/hyptonic at about 6 weeks. Her tone is still poorbut I am hopeful. It sounds to me like your little one is just catching up because of her preemie status. As long as there are no other conditions diagnosed it will probably resolve on it's own.

Hope this helps a bit! Julie

Low tone is not necessarily a bad thing or something to be concerned with. In mild cases, it isnt always very obvious--and mild cases generally are not a big deal at all. They may be floppier or take longer to aquire physical skill but they do aquire the skill if no other conditions exist with it.

My son Gavin has tone in the normal range, but on the lower side of normal. He feels very floppy, and feels like he will drop through my hands if I dont hold on tightly. He is bendy and flexible and well....floppy!

He took a little while to hold up his big head all by himself (it is very heavy in his defense--his head size is in the 90th percentile!) but he rolled over for the first time at 10 days old, was sitting by 5 months, crawling by 7 months and walking by 10 months. He is now 15 months and can almost jump getting both feet off the ground and can run and walk up one stair holding on to the rail all by himself. He is strong even though he is floppy and flexible. Clearly, it has not posed a problem for him in terms of physical development!

He struggled a bit with fine motor due to the floppiness but we didnt do anything for it but allow him to pratice those skills through play. He nursed just fine, but as he started to have feeding problems caused by pain, he stopped eating and drinking normally. Then we noticed his mouth developing low tone from not using those muscles enough. For that, we give him things that are hard but chewy to bite on to work out the muscles.

Low tone can affect their GI tract because the whole GI tract is a muscle. If that muscle has low tone, it can cause them to reflux because their LES muscle wont hold down food well. It can cause a delay in emptying from the stomach because the stomach muscles wont contract hard enough to send food through at an efficient rate. It can cause constipation because the intestines wont contract hard enough to send food through. As they get older though, it usually improves because their muscles get stronger through use.

Thanks ladies, the physical therapist came by again last week, stretched out her legs and arms, feeling how her muscles reacted and all, picked her up, sat her up and kinda pushed her forward to see if she would catch herself and she said she looked fine and did not qualify for the program. She did show me a few things to do to help with her sitting up, she does not do this yet which has me a bit worried. She is strong though. Whenever I pull her up, her head does not fall backwards, she immediately holds it up and kinda pulls herself up and she is pulling her knees under her chest so she looks almost ready to crawl, just thought babies sat before they crawled?

my baby came at 34 weeks ,she layed there with absolutely no flexion.. legs straight out.. arms very floppy.. later we found out she had turner syndrome..but at first had no idea. the doctors just kept saying that she had "low tone" but now at ten months she is sooo much better . she sits unsupported, she's leans forward and catches her self with her hands..it does improve over time :)