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Behaviour/development

Anyone a physiotherapist?

12 replies

Aria2015 · 11/03/2017 20:10

My son is 19 months. He walked on time (13-14 months) and is steady on his feet but he was late for learning to stand on his own and he only rolled over for the first time last week. He also can't get from the laying down position to sitting or standing. So he's never for example attempted to stand in his cot or been able to get up if he falls over.

Dh and I have been very worried and after various appointments with health visitors and my gp we paid for a private appointment with a paediatrician. He assessed lo and was concerned. I told him my fear was that lo had muscular dystrophy. He agreed it had crossed his mind and arranged for lo to have a blood test straight away and after a few horrific hours we got a call to say his levels were normal and there is nearly 0% chance lo has MD.

The paediatrician has said he can't rule out a rarer muscular issue but for now he has put it down to a 'quirk' in lo's development and he wants to leave him and see how he gets on. He will be referring lo to a physio but the waiting list is long (we can't afford to keep paying privately). He said he doesn't think there is any urgency which is fine but I was wondering if anyone could recommend some exercises or activities that might help lo on the meantime until we are seen? Just want to feel like we're doing something to help him.

Thanks in advance for any replies.

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TheFirie · 12/03/2017 07:46

Hi,
you might find a physic in one of the Health boards here www.mumsnet.com/Talk/general_health or here
www.mumsnet.com/Talk/childrens_health.

But maybe change the title to something more specific, adding at 20 month unable to sit

I think you are right to take this seriously and if I were you I would go back to my GP and push for further investigations.

What about the other milestones? On this website you can see the gross motor milestones your child should have reached, www.therapiesforkids.com.au/conditions/gross-motor-milestones/.
Document and educate yourself, so you can challenge a dismissive attitude. IF there is, and there might not be, because every child develops at a different pace, but if, there is , the sooner, the better to give appropriate care and/or therapies.

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Aria2015 · 12/03/2017 08:48

TheFirie - thanks for your tips! I'll repost and change the title.

He has been behind in rolling, getting to standing and getting to sitting. He never crawled (bum shuffled) and he sat on time and sturdily too. Like I said, he walked on time and his walking is fine. The only way I can describe it is like he's just missed a step somewhere. He's laying in his cot now - he's been awake 15 minutes and he's been singing, chatting and calling 'mummy' on and off. He's getting fed up (I can tell!) but he makes no attempt to sit up or stand up in his cot.

He's not a fast paced child. He is advanced in his language and communication and would rather chat away on my lap than run about. No concerns about him socially, he's loving, friendly and generally very bright.

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TheFirie · 12/03/2017 09:49

This is excellent news. What about tummy time, may I ask? A well hated position, but said to increase strength.
What if you put a loved toy slightly, like 10 cm out of reach and he has to stretch from his lying position to reach it?

Have you seen this website? The difficulty rising from a laying position is something that needs investigating.

www.childmuscleweakness.org. Maybe some of the videos will ring a bell for you and you could suggest the website (official medical one, not a blog) to your doctor and insist for a referral even for the sole sake of dismissing any neuromuscular issue.

I would become one of those pestering mother and if needed I would change doctor/ medical center.

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Aria2015 · 12/03/2017 12:08

Thanks for the reply. We did tummy time when he was smaller. He hated it and it never led to rolling or crawling. As he started sitting up at 6-7 months he loved being upright and would have a melt down while on his tummy so we did it less and less. At that point, apart from not rolling we weren't concerned as he seemed to be developing normally. It was only when he started walking at 13-14 months is struck me as odd that he could walk but that he couldn't get up if he fell over and that's when I first contacted the health visitor.

I haven't seen that website. I'll take a proper look tonight. Thanks again.

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TangerineTrees · 13/03/2017 07:12

Following with interest. We are - almost word for word - in the same situation as you, only our DS is 14months old. We're seeing a physio at the end of the month (privately for speed as our NHS referral hasn't even come through yet & it's been ages) - happy to let you know any outcomes or advice if you think it'd help?

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CradleCrapNap · 14/03/2017 10:34

I'm a physio but not in paediatrics. It sounds a bit like you've skipped a stage by maybe putting him into a sitting or standing position because he was happier there than say on his tummy. So he has developed the ability to stay in this position but not gained the ability to move between laying and sitting or sitting and standing. I think the person who mentioned tummy time has a great idea. He needs to go back to basics, and learn to strengthen all those muscles. Start with lots of tummy time. Get down with him, use toys he likes, make a game out of it, maybe even let him watch a bit of a cartoon or something on an iPad? Find your local sensory room (childrens centre/soft play?) and get him laying and looking up at the lights, distracting him by talking about the colours/bubble tubes etc. At home, use a pillow or a wedge underneath him so his face isn't so close to the ground. Start with just a few minutes of tummy time and build up. Also games on his back trying to reach across for a toy on the opposite side to encourage rolling. Give him praise for trying and don't push it if he gets upset. Just try again later. I'd be trying to aim for doing this 3-4 times a day to be honest but if you only manage a little don't worry. Hopefully the paediatric physio will then be able to give you a more specific assessment of which muscles are weak and the right exercises. But you won't go far wrong going back to basics on the floor.

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CradleCrapNap · 14/03/2017 10:39

Or what about a gym ball? Lay him on his tummy and encourage him to use his back and neck muscles to look up? Another good one and doesn't feel so much like tummy time to them. That and laying them on your thighs with you sat on the floor, knees bent, them looking over the top of your knees to your feet, and pretending to be superman or something.

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TheFirie · 14/03/2017 19:04

Good to see a physic coming forward. What about the arms and hands? He never crawled, can't lift himself to stand, nor can't go into sitting position from laying down and that's what baby and toddler use.
I would say it is more than skipping a step. And rolling at 18 months? What happens if you put him on his hands and knees? Toddlers use furniture, wall, rail to lift themselves or push the floor to stand up.

DS2 hated tummy time and would despair, so we gave up and it didn't make any difference in his development.

I like the idea of a soft play centre more for observation. There are tons of climbing activities and I would go there and film him on my phone.

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Aria2015 · 14/03/2017 20:21

Thanks cradlecrapnap! I've been practising everyday with him for the last week or so. I take his bottoms and socks off and on a mat lie him on his back and he will roll over with ease and then get up. I've watched videos of gowers sign and he gets up just like the children in the video. He always pushes up with his hand on his thigh as he raises. So he definitely as a weakness but hoping now MD has been ruled out that it's something exercise can help with.

He can get from sitting to standing. He walked at 13-14 months but didn't learn to stand until 16/17 months. Again he skipped a step as most kids start by pulling themselves up to standing and then doing it independently but he never pulled up, he just went straight to doing it on his own?

We're going to pay for a few physio sessions if the waiting list is too long. At least then we'll have some examples of exactly what to do with him.

In the meantime will try your suggestions. Thanks again!

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Aria2015 · 14/03/2017 20:28

TheFirie - thanks for your reply. I did tell the paediatrician that we did little tummy time from 6-7 months but he said he didn't think that was the issue so that made me feel a bit better. I'm sure that tummy time exercises now though will be helpful to improve his strength.

He never seems to think to draw his knees up. I've tried doing it for him but he doesn't like it and starts to get upset and then topples over.

If you saw him walking around you'd have no clue there was anything wrong. It's just when he falls over or say goes down a slide and ends up on his back that you can tell something is a miss as he just gets upset and doesn't try to get up.

In the last week he's started to stand if I lay him on his back and encourage him to roll into his inky. He will then clamber up (without bottoms or socks) but if an hour later he falls over and lands face down he just starts crying and thrashing about. I can't get him calm enough to realise that he got up from that very position earlier and that he can do it. Maybe he's developed a bit of a fear of falling down as he's been unable to get up for so long? I'm hoping he'll get more confident as we practise more.

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CradleCrapNap · 15/03/2017 10:13

Maybe he has tightness or discomfort that is aggravated by certain positions, so he avoids them, and compensates with other muscle groups? Did you have a normal pregnancy and delivery?
Arms and legs need a strong core to function properly. So if the core is weak, he'll struggle to push up with his arms or legs.
It's so hard to diagnose over the internet. You do need a paediatric physio assessment. They will look at his range of movement in all his joints, assess his muscle length, muscle tone and much more. They will also feedback to the paediatrician if they feel other tests are needed. Good luck!

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Aria2015 · 15/03/2017 13:51

Thanks cradlecrapnap. Yes normal pregnancy and delivery. Having said that, I barely felt him move while I was pregnant, even towards the end when he was fully grown. I didn't have an anterior placenta and I'm not overweight. I went to the hospital so many times worried about the lack of movement but every time they did stress tests everything came back fine. When he was born he was healthy but very still, he didn't kick about and so I just put that down to how he was.

Anyway had a letter from the paediatrician today documenting our appointment and stating that he's referred us to a paediatric physiotherapist so hopefully an appointment will come through soon. I'm going to enquire about a private appointment also.

Thanks for taking the time to reply to my posts. I appreciate it Smile.

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