Hypotonia, or low muscle tone, & developmental issues in toddlers

[cozziecane]

Hi there,

Our little man is starting to see a team of specialists regarding his slow development with his gross and fine motor skills, low muscle tone (not sure if it's Hypotonia yet) and speech. Just wondering who else out there has been/is going through the same thing. I'm riding a roller-coaster of emotions at the moment about the whole ordeal, but we're getting him the best help he needs right now.

Thanks for listening...

[Miss.B]

Hi sweetie, first of all big hugs to you How old is your little man? We're doing similar ATM, my DS is 19 months and quite behind so it seems with most things. We have just had the 18 month check up and following that we've had a test done to assess his fine motor/gross motor skills, development and speech. He scored a bit low for what is should be for his age so we're off to see a developmental paed. I am so scared ands riding this emotional roller coaster too, because I'm scared what they will tell me. He isn't walking by himself yet, isn't pointing to things which apparently is a huge concern according to the MCHN, and basically not really following simple instructions. He completely ignored her during his assessment, yet when we got home he was very responsive to me and DF. I don't know what to think because we can engage him with pretend play, make him do a few things so he is able to follow instruction, and I think he understand a lot of what we say to him. Yet the MCHN said he seems to be living in his own little word

[CeCe]

Yes, yes, yes. DS started child care at 9 months and as they do, got cold after cold. We thought he'd be sitting soon but the colds were delaying him so at 12 months we finally 'gave-in' and acknowledged to ourselves that something else may be an issue. We went to the GP who referred us to speech therapy after doing a tick and flick of what DS was doing. He scored fairly low.
We were a little confused by this as our main concern was lack of wanting to sit up (DS would throw himself backwards even if were fully supporting him). Anyway, speech referred us to physio and a feeding clinic as you can access speech through the feeding clinic. We started to see a physio around 12 months, and with fortnightly sessions in the last 2 weeks DS has started to sit by himself. We still can't just put him down in the middle of the room as once he's had enough he'll still throw himself back, but it's progress.
Physio referred us to Occupational Therapy due to concerns with sensory issues and as DS may need assistance with things like rolled ankles etc when he does get mobile. DS hates tummy time and has always refused to put weight through his legs when held upright. He always has. Googling low muscle tone, this is one indication. If only I'd known...
My paed has examined DS and just said he has a large head in proportion to the rest of his body, but speaking with other people, they have pointed out there are plenty of other children with large heads and don't all have trouble sitting etc. As the paed seems to be just focusing on the big head, and at the prompting of the MCHN I'm changing paeds, but like Miss.B there is a long waiting list. I guess it's a good sign though as they one I'm currently seeing was only about a 6 week wait.
I do get overwhelmed by it all and sometimes I think I'm looking for issues when they may not really be there, especially when talking to other people who keep telling me "he'll do it in his own time", or my 'favourite' "don't rush him, you'll miss him being where you put him when he's walking". You know, if I felt confident that walking was a sure thing, and it would be an easy skill for DS to pick up, I'd be fine with that comment, but I'm not.
Sorry, I've gone on a tangent about myself, but you are not alone. It is a rollercoaster. I just have to remind myself to take a day or a step at a time. I hope some ladies who have come out the other side post here and offer some support.
xx

[skybie]

i will mention this to Razzberry,im pretty sure her little miss had hypotonia

[Razzberry]

Hi, Thanks Skye for letting me know bout this thread!!

Yes my dd had/has hypotonia (which is the fancy name for low muscle tone). My dd's was picked up at her 6 month health check and then a paediatrician agreed aswell and so went saw a physio for a year. She was always behind for gross motor stuff like rolling, sitting, standing and walking. However she has completely caught up now. I am not sure if it was the physio or it just took more time. The physio said many children have hypotonia they just aren't diagnosed, but are the later developers. At our last appointment (18 months) the physio said that noone would know now by looking at DD (only a physio and a paediatrician if they looked hard.

I was very scared about what this may and could have meant and it is so incredibly stressful being told your child is not doing the "norm".

Ask any more questions..

[CeCe]

Thanks for coming in and sharing Razzberry.

I guess I'm in a state of confusion atm. The MCHN suggested I see a different paed as our current one is not looking past one thing, but I'm not sure what we need the paed for if the physio has diagnosed low muscle tone. Did your paed do any tests, or did they just confirm the low muscle tone diagnosis? Am I looking for issues by going to a paed? I guess my mind is telling me atm that going to a paed is looking for something more sinister than 'just' low muscle tone. How would a paed compliment the physio treatment we're already getting? Sorry for the barrage of questions. I'm just trying to get my head around all this and try to make wise, educated decisions.

The other thing I've been told is this is ongoing and DS will always have to deal with it. It sounds like your DD has done really well. Does she require ongoing treatment, or daily exercise to maintain where she is at now?

[cozziecane]

Wow, thank you for responding ladies. Nice to know we're not alone. My DS hasn't been officially diagnosed with low muscle tone (although our private OT has said it, she is not the specialist that we will continue with once in the public system) but after reading up on it, I'm sure he has it, even if it is just a very mild case. He seems to fit some of the profile of it.

We have our public system assessment this Friday, but because I don't want to wait to get things started we're consulting the afore mentioned private OT and Speech Therapist while we wait the 3-4 months to get into the public system. I'm not sure how long it will be actually, as I'm not sure if he's chronic enough to get in straight away. His delays have been labelled by one as "moderate", so somewhere in the middle.

He sat up at 8 months, crawled at 16 months, walked at 20 but has not so great balance and his gorss/fine motor skills need a lot of work and he only has 3 words - ma, dada and ta. He's 2 years and 2 months.

There is a 6 month wait to get into a renowned development paed privately, but hopefully we can get into one sooner than that. I had taken DS to my GP and my original paed but was unhappy with my paed's lack of concern when he was 17 months old....although hindsight is a wonderful thing.

We've made some toys and games and bought some as well and continue to spend at least 30 mins (not even sure if that is enough) a day doing these or until he gets bored. We are plugging away at the spoon feeding and cup drinking, he does it well sometimes but not so well other times. Trying to wean him off his bottles too.

He also needs more grommets and his tonsils out in a month....tough times ahead. But it will all be worth it.

Thanks for listening.

[Razzberry]

Hi Cece - no, we dont have to do any ongoing treatment, the paed always asks how she is going and watches her walk etc but so far (the last 7 months) hasn't been concerned so thats good.
He also sent us for a head ultrasound, Im not sure if this was related to her severe reflux, muscle tone and the fact she was high risk when I was pregnant as had high nuchal fluid but it all came back fine. I do feel that the paed always checks EVERY aspect of her development closely but he costs alot of money so Im glad things will be picked up early if need be. I am an early childhood teacher and really believe in early intervention. How old is your ds?

[CeCe]

DS is almost 15 months and we've getting this seen to for about 3 months now. Our paed did get a head ultrasound done, however at 13ish months his fontanelle had almost closed so they couldn't get a good view of everything. What they did see was fine though. At the review the paed did say to himself more than us I think, he should have got a head X-ray, but then dropped the subject.

It's good to know your DD doesn't need any ongoing treatment. I think that's the part that scares me. I'm guessing the physics etc are looking at worse case scenario but aren't tellng me where we sit on the scale of minor to major issues. I think that's what I need soi reason know what we're dealing with.

Thanks for that info and your support.

[Razzberry]

Is it just the muscle tone issues at the moment or is he behind in other milestones as well? I think it is important to see a paed you feel comfortable with. The first one we saw when she was born was awful and made me feel like the worst mother, I am so glad we changed and have found a caring one who really listens to my concerns.

[CeCe]

I think the main issue is muscle tone, along with some sensory issues. He's just had grommets after a few months of almost continuous ear infections, so if he's behind there we know why. Generally he is a happy and easy going little man - maybe a little too easy going because he doesn't push himself but I think that's part attitude, part muscle tone.