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Any physiotherapists? 19 can't get from laying down to sitting still

(10 Posts)
Aria2015 Sun 12-Mar-17 08:57:58

I posted in the development board but was recommended to try this board...

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.

Itsnothingoriginal Sun 12-Mar-17 09:40:19

Do they think it is a weakness in his core muscles? My dd has low muscle tone and was delayed in learning to transition from lying down to sitting etc. We saw physio for quite a few years and did a lot of activity to develop her core muscles.

If this is the case with your lo - you could try this site which we used to make doing physio more fun! I searched on core strengthening exercises

Aria2015 Sun 12-Mar-17 11:04:00

They haven't said. We went to the appointment and he was examined thoroughly (for an hour) and he said he was concerned. He said it could be a quirk in his development or it could be a muscular issue and that's when the muscular dystrophy was discussed. As that can be indicated via a blood test that was arranged straight away and he kindly had the results rushed through so we found out a few hours later that his level were normal. He then just said about physio and just said again that it was now likely to just be an oddity in how he has developed.

We might pay for a one off physio appointment just to get an initial opinion. Just want to be proactive and help him as much as I can.

yomellamoHelly Sun 12-Mar-17 11:10:38

I would find a decent physio.

In the meantime I'd be doing lots of tummy time. On a wedge or over a bolster to start with if he can't cope with that. And making sure he does some time every hour and gradually building up how much time he spends in that position and also playing with removing support as he gets used to it.

I'd also be thinking about practising rolling with him (arms over head, moving leg over etc.. etc - try doing it yourself first to understand how your own body moves).

You could then develop these into commando crawling and pushing up into side sitting (and a whole host of things along the way).

I learnt an awful lot very quickly when ds was little and a good physio can be an invaluable teaching resource.

Aria2015 Sun 12-Mar-17 13:40:47

Thanks for the reply and tips, I'll give them a try. His rolling is pretty good now, if I put him on his back on the floor he will roll quickly onto his front bit from there he gets stuck. If he's On a very grippy surface he can sometimes struggle into getting up. Weirdly he doesn't use his knees. He goes into a push up and his body in the plank position and then walks his legs up to his hands. The way he does it is way harder and takes more strength in a lot of ways. It's like it doesn't occur to him to bring his knees in? So strange to watch. I'm hopeful we'll sget the an improvement though physio.

cestlavielife Mon 13-Mar-17 13:07:09

It s called the Gowers sign and if bloods are negative for muscular dystrophy he could still have other muscular issue e.g. myopathy or just low muscle tone.
Get referral to community physio via gp or hv. Ask for referral to his paed and then to neuromuscular clinic at nearest children's hospital for full assessment. This will take time but push the community physio for now. How is he otherwise e.g. play development speech ?

cestlavielife Mon 13-Mar-17 13:10:52'_sign

Also call the m d association they list many different conditions and maybe can advise where your nearest neuromuscular clinic is for assessment and how to get referred. Get the test report from private paedt and make copies to take with you.

Aria2015 Mon 13-Mar-17 15:07:19

Thanks for your reply cestlavielife. His other development is fine, in fact his language and communication are advanced for his age. The paediatrician's approach is to leave further testing for now and see how he gets on with physio. I'm not sure if this is because we are limited where we live? There are no children's hospitals, we'd have to fly to the UK for those kind of tests I think. Anyway I composing all my thoughts together and I think we'll pay to see the paediatrician again to make a next steps plan. Hoping physio also is good.

cestlavielife Tue 14-Mar-17 09:22:46

A good physio will assess . tell you how he is presenting . offer you a program of exercises you can do.
They won't diagnose underlying cause but you could ask if physio thinks you should get more testing done.
Take videos eg 1st of every month so you can track and monitor . Good way to track progress.
If there is any loss of skills you will need to get seen by a specialist asap.

Aria2015 Tue 14-Mar-17 20:13:56

Thanks for taking the time to reply. Yes, I've been taking lots of videos. I watched the Gowers sign video and he gets up exactly like the 19 month old in the video. He definitely has a weakness that I hope physio will help. The fact that MD has been ruled out is a relief though as the Dr did say that was the most common cause and anything else is much rarer so hoping it's just how he's developed and can be recipient with the right exercises. He's already come on loads in the last fortnight with just things we've been doing at home so I am hopeful.

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