Prem baby (now 22 months) very delayed physically, any experiences?

[ShakkaKhan]

Hi there. My little boy was born at 30 weeks (no apparent reason for early arrival) and hasn't really had any health problems - the odd cold. So we've been very lucky. He's very bright (IMO ) and generally a very happy little soul. He is 22 months old (actual age).

The problem is his movement. He never crawled, has always hated being on his tummy. He can only just sit from laying down (he will sit happily if placed in that position, but struggles to sit up on his own), he only pull up to standing with lots of straining and encouragement and only then when there's something exactly the right height, he can just about sit down from standing. He is happiest cruising (has done this for about a year now) but has to be put in the position to do it. He took about 5 steps on his own before Christmas - he was very excited about something and just went for it. Nothing independent since. He cannot stand unaided, he needs to hold onto something. Can hold on to a wall. His balance is very poor and he will occasionally fall backwards (a couple of times a week, onto our hard wood floors )

He has been having sporadic physio over the last ten months (he's had 6 x once a month physio group clinic, 6 x weekly physio group clinic, and 5 x weekly hydrotherapy) but nothing seems to be strengthening his core. He has low muscle tone and his main problem I believe is his core. The exercises they showed me with him to help him sit up - turning him on his side, lifting his upper arm so he uses his bottom arm to push up - have had no effect at all and he has only ever pushed himself up to sitting about five or six times. I do this 5-10 times a day with him. He finds sitting up easier in his cot, as he can use the bars to help, but him sitting on the floor is virtually impossible for him to sit up.

The physio team have been ok but wanted to sign him off before Christmas, saying that as he was cruising, "he'll get there". I pushed for something else and got him on the hydro course which started in Feb, has finished now, which hasn't really done very much and I am feeling more and more frustrated for him and for myself. I am a SAHM and spend all day moving him around. I try and push him to do things for himself but he finds it physically very difficult and I don't know how far to push him - how much is him being 'lazy' (for want of a better word) and how much is him physically being incapable of doing.

I need to be more proactive about it, I am chasing the physio team but no one apparently wants to call me back .

Sorry this is long. I suppose my question is, has anyone had similar experiences? Are there any reliable online resources I can use, any good YouTube physio videos that I can access and help him more myself? The only real thing I took from the sessions before were to help him get into and out of a high kneel. He can just about do this if there's no other option. I encourage him to do this maybe 4-5 times a day, but no real improvement over some months now. I try and encourage him to 'side sit' but he hates it as he can't use both hands, he needs one hand to hold himself up as he doesn't have the strength in his core.

What else can I be doing? It breaks my heart seeing all his little friends running about and he just watches. He will 'run' after them holding my hands, is slightly more reluctant only holding one hand but will walk if the temptation is right. My friend's 9 month old baby is way more mobile than him.

Can anyone help? I'm in East London.

[feckitafeck]

My dd was born at 26 wks. We are very lucky that she has no health issues. We realised early on that it would take her longer for the physical stuff. She didn't sit unaided until she was 15 months, crawling came at 20 months and she finally walked aged 2.

She was never confident running until 3.5 years.

Even now aged 5 she doesn't have the leg strength to cycle a bike even with stabilisers but she uses her micro scooter to go lightning speed!

I don't know if that helps you much.

I've go to mention that my perfectly healthly full term ds (3) couldn't actually roll over until 4 months ago!

[ShakkaKhan]

Thanks fekitafeck. Did she have much physio and did you find it helped? Did you do any exercises with her at home? I know it'll take him longer but he's already at the 'late' end and I want to help him as much as possible

[ShakkaKhan]

[LongDivision]

Yes, my prem DS did not walk until 2 (and started shuffling around 15mo). I never found physio particularly helpful. I think it really was just a matter of waiting until he was physically ready to balance and walk. I understand how frustrating and isolating it is, though. Especially when certain well-meaning relatives try to 'help'. Or when it becomes too discouraging to go to the park or a playgroup. etc.

I noticed a little bit of progress whenever we went swimming - I'd zoom him around on his belly and let him splash around. The excitement of the freedom of movement meant that he wasn't paying attention to how hard he was working. Or maybe it helped his body learn new movements or positions. I don't know. But it did seem to help in our case. Also, in the later stages, a very short (2-3 step) staircase with something nice at the top seemed to encourage climbing, which then led to interest in standing/pulling up to standing.
Which reminds me, DS started walking before he learned how to stand. I think it is supposed to be the other way around.

Is there a chance your child is hypermobile? I've only recently heard that there can be a link between premature rupture of membrane and hypermobility (in the sense that if you are hypermobile, you might be more prone to PROM, and the hypermobility is genetic, so you'd pass it on). This might suggest a link in some cases between prematurity and late walking...

Oh, the falling backwards: mine did this too - rather than bend his legs, he'd tip over backwards like a tree. I didn't think he'd ever learn how to fall properly. it seems to have been only since he started walking that he's learned that skill. I'm quite proud that he is now able to fall and then quickly get up again without any tears!

I hope your child gets there soon. I could never find much information about late walking - most of the concerns seemed to be about 14- or 18-month-olds, so I hope some of this is helpful.

[hotdog74]

My DD was born at 33+6. She didn't sit until 9.5 months, crawled at 13.5, stood supported at 15.5 and finally walked at 22.5 months.

She was referred to developmental team at the hospital, but only had monitoring, no treatment, and they said as long as she made progress, and didn't actually regress in any way it was just a question of waiting for her strength to mature.

She is nearly 3 and a half now, and has no problems. Can ride a scooter well, but is less adept at climbing playground equipment than her peers.

Hope all goes well for your little one.

[physiomaz]

Hi, I am a children's physio and have worked with babies born prematurely for many years. Delays in gross motor development are fairly common and physio can be useful to identify if there is anything abnormal to worry about (which I would assume, if your physio's are happy to discharge they have checked this) and also to help you learn to facilitate and encourage your son's gross motor development.

It does sound like your little boy is getting there and has lots of lovely emerging skills. The time taken to practice and consolidate these skills so he is more independent in his movements can take time.

Have the physio's ever visited you at home? It can be useful to practice techniques to help encourage and facilitate his gross motor skills in a home environment. This can make them easier to continue with and they can also give you a few different suitable options. I would be very happy to chat about it with you if this would help. My contact details are available at www.greenwichchildrensphysio.co.uk

[ShakkaKhan]

Thank you everyone has replied, in particular thank you physiomaz (I may well be in touch). No one has visited us at home, I can see how that would be really useful though. Yes I was initially encouraged that they wanted to sign him off but I'm not sure I am doing enough with him to encourage him further. At least with a weekly physio course there was designated time every week and new exercises and things to do with him.

He was standing up in his cot for the first time ever when I got up him up yesterday morning! Small victories.

[Monisilva]

Hi Shakkakhan,

I am a paediatric therapist also and although my working experience is working in hospitals I am aware of how different the support from childrens services can be depending on the area where you live. It sounds like you have been doing an amazing job in supporting your little bubba and the reality of NHS is that sometimes the services offered are just not enough to meet children's needs. I don't know your physio team and it might be that they are absolutely great but if it was my child I would maybe get a wider team to review your little one if they haven't done so already eg a paediatrician, which should have happened really if your baby was born prematurely. That way you can be reassured that there is nothing else impairing your childs development and if it is just a gross motor problem with physio support your bubba should get there.
Good luck

[feckitafeck]

Sorry just came back to this thread. We only had a couple of appts with the physio. Even though my dd was clearly delayed, they were happy she was improving and what she was capable of. I was quite comfortable to keep encouraging her at home.

I also put her to a nursery one day per week before she started walking just to give her a little push. I swear it worked a treat for her.

[ShakkaKhan]

Quick update. I managed to get a consultation about a month ago and saw the physio, she spent an hour and a half with him and agreed to put him on a six week one to one physio. It's not due up start for a fortnight, but hope it helps when it starts.

DS is now at a childminder three days a week as I've just gone back to work, it seems his movements are getting slightly easier but still not balancing or walking. I have to say I have more patience with him now we are not together 24/7 so am helping him a bit more when I'm with him. I've also shown the childminder what exercises etc to help him and she seems to be doing them.

The physio recommended we encourage him to crawl by tempting him with something, putting him on all fours and manipulating his hips and thighs to crawl, this is very very difficult to do and he hates it. I can't imagine him ever walking and I feel like I've failed him in some way