Hi All I don't start threads here very often, but I thought I would post a quick update on my son in case it can help other mums out there!
My son was diagnosed with hypotonia (low muscle tone) and hypermobility when he was 11 months and not able to do much physically (no rolling/crawling, etc). He was also assessed for a speech delay because he was unable to make sounds (cooing, vowels, etc). He was again assessed by a developmental ped team + speech therapy at 18 months and began speech therapy a few months later. He did not require any physio because by 18 months he could walk. Anyway - he is 2 in a few weeks and doing SO fabulous! He is still not very swift on his feet (lots of tripping, can't run or jump, etc) but is doing great.
One of the biggest things that was troubling was his speech because we didn't know what was the cause. At 18 months he could still not say very many sounds (not words - just vocalizing sounds). He started speech therapy but I wasn't sure how much it was helping as he had good interaction, but would not vocalize at all. Anyway after our appointment with the dev.ped. again yesterday, they think the issue has been the hypotonia all along. They did a full analysis of different mouth motor skills aside from speech and found that he isn't able to do quite a few things. It is a big relief that we are getting somewhere with finding out why he is having trouble! They aren't 100% sure of course, but it seems to fit much better than just a general dev.delay.
So I thought I would post some of the symptoms for people who are concerned, googling, and perhaps freaking out. Especially if your LO has low muscle tone generally. It might be something to ask your doc or HV about - as it took a long time for them to look at this! Symptoms my son has or had:
- No speech
- Not chewing properly (I wasn't aware of this because he is my only LO and I had nothing to compare it to!)
- Mouth almost always open
- Took a long time to be able to blow bubbles or suck from a straw. He still can't blow raspberries.
- Communication and understanding are far more advanced than his ability to vocalize
- Now that my son can make some sounds/words they are not understandable to other people and he can only make a sound from one part of his mouth.
Obviously these symptoms could be lots of different things, but the therapy for helping a speech delay because of hypotonia is different from other therapies. It focuses much more on mouth structure and muscle strengthening. So it's worth an ask if what I wrote sounds familiar!
Also wanted to mention my LO is doing so well with his communication generally. I have taken a few courses for children with dev.delays and they have been so helpful in my every day life with him. They focus on communication and interaction with the kids rather than words, and once I understood how important that was it helped so much with our frustration. He can communicate with us now (combination of minimal words/sounds/gestures/pictures) and I feel like I am getting to know him in a whole new way! I was so focused on the words before that I wasn't paying attention to what he WAS saying.
Oops - hope I didn't make this too long! Just thought I would post.
Hopefully it will help someone!
Problems With My Daughter Were Caught At 4 Months Cause she was rushed into hospital because the doctors wern't sure if she was fitting.
She Has low Muscle tone,She's 9 1/2 months
Can't roll,Crawl,Sit Up On her Own,has Tight muscle in her neck,She can turn it fine to the right,But can't turn it fully to the left. She couldnt lher head fully till 6 months
It just seems to be affecting the top half of her body as You can tell she has strength in her legs.
All she wants to do is be on her feet all the time,Easily gets frustrated when she's on the floor or on her stomach.
She was reffered to speech therapy,She's just starting saying 'dada' but it's only when she's on her own and she whispers it.It's good she's doing it,but they reckn she is going too need speech therapy.
She can vocalize sounds,and she concentrates alot on your mouth,and her mouth will twitch abit but nothing comes out
Doctors havn't told me whats causing this,she went for an MRI and that came back clear,And she's under genetics for next 10 years.Because the doctors don't have an answer atm.
They don't have any reason for my son's hypotonia either, but once he could do some of the things you mentioned, he started improving much quicker! He was just starting to sit unaided at around 9-10months if we put him into a sitting position, but he would fall over after a while. For him, once he started rolling and crawling (13 months) he got alot more strength. I really found that the more they can do, the faster they improve! Your girl sounds like my LO with the standing - he only wanted to be on his feet too (we thought he would eventually walk without ever crawling) or in his jumperoo.
Is your LO in physio? I do wish we got in sooner as I think it would have made loads of difference. There is a really long waiting list for it here. He did start walking eventually on his own though! He still isn't the strongest walker and falls/trips alot but he gets around! And he is improving every day! xx Also do they have any ideas what could be causing the tightness in her neck?
Oh and about the speech - I have noticed that as he improves his muscle and motor control in his mouth/tongue he is also having an easier time eating things that require chewing! I don't know if your LO has issues eating, but I thought I would mention. He is also giving me a kiss with his mouth closed for the first time ever! He still can't do the actual kiss part, but I don't get the open-mouth face-butt anymore!
Been proping her up in the corner of the sofa alot,And we've noticed that even in just a week her posture has started improving,and she has now started putting her hands by her sides (That thing they do to stop themselves falling)
Yeah,She's Been Having Physio Since About 5 months,It's been 2 sessions a month,which tbh I didn't think was enough physio.She goes to 'spot' group now once a week where they do physiotherapy and different activity's to help stimilate and develop the skills of the children.
Lovely To Hear He's Improving!
If I remember,the reason for it could have been the position she was laying in before she was born,
Not sure about the eating problems,It's hard to feed her sometmes,you have to constantly keep her attention,She does have abit of a high palate,which has been mentioned to different Medical people.
She has quiet got the hang of chewing yet when it comes tto lumpy foods.
Awh That's Lovely
Thank You for responding your experiance with you'r son,it really does mean alot.
And I'm Glad he's improving every day
Hi, I have a son Evan who is 7 and he has Cerebral Palsy but he has high muscle tone, AndyyMay have you ever heard of Conductive Education? Evan has been going since he was 1 and it has really helped him, the push him so much harder than the physio's, have a look in your area if they have it I would highly recommend. Some places charge up to £50 a session but Evan attends a charity based one and it is free, but we do fundraising to help the charity. Also Evan does targeted training. Just a few things to look into as the younger the child the better it is to help them with various therapies. x
Hi, I stumbled across this thread in search of some info on low muscle tone. I hope you are still around?
Thank you for your post regarding your sons diagnosis. My son has all of your sons symptoms. He is 100% in every other regard. Happy, physically able, can hear, communicates very well without speaking. I started taking him for speech therapy but stopped as I wasn't sure it was working. Are you still taking your son? What has been your experience?
Some of the things we are supposed to focus on is teaching him how to blow, and suck through a straw, place food in the back of his mouth to assist with more awareness in his mouth, give him more textured food which makes him work harder. I then read an article that said that there is no scientific proof that any of this helps with speech. The only thing that helps is speaking.
It is heart breaking...and I know he is absolutely fine. He is one of the happiest children i know, but I don't want him to fall behind, not this early on in his life.
Hi, I've know it's been a while since you posted but I don't come on the SEN board much. My DS was two in October and has hemiplegia (cp) on his left side. He is low oral tone and difficulty forming sounds and words. We are seeing a great speech pathologist and are seeing improvements. It's slow going but steady. He is otherwise very well. Very physically active. He struggles to use his left hand a lot more but really tries and perseveres and does use it a lot as an assisting hand. Speech is his main issue now. I too have been told by the speech pathologist that oral motor exercises are not enough.
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