Can anyone give me some hope?

[vixies]

Does anyone have experience of having a child that was very late walking and talking, but it suddenly just all came together? Ds is 20 months, says mumma and will stand but no more. He has poor muscle tone and flails around a fair bit.

Most days it's fine, but every now and then, like today, I just wish I could know what to expect in the future.

DS1 didn't walk until 17 months and could only weight bear on his legs for a short time before that. He could say a few single words at 20 months but didn't really 'take off' with talking until he was 3.

He is 7 now and still behind his peers in motor skills but improving all the time. He is very articulate for his age though his speech is a bit garbled at times.

So yes - I can give you huge amounts of hope - but I think you should flag up your concerns with the GP (if you haven't done so already). I think if DS1 had had some OT at an early age it would have helped him enormously.

I know of a little girl who was just over 24 months before she started walking. Her parents were about to see if there were any underlying reasons when she started walking.
I don't think there's any harm with you having a word with your GP though, especially as you've noticed his poor muscle control.

Thank you. We are getting all sorts of input and help, but maybe you know how it is - sometimes you feel you're never going to progress beyond the current stage.

with this type of issue, the early the intervention the better, so it's good that your DS is already in the system. In terms of the late walking - have you been advised to try any signing with your DS - it's meant to be good for kids with physical problems with speech, as it's easier to do the hand movements than the mouth movements for words.

We're just trying some makaton. Not sure if he has the co-ordination to make it work though.

Vixie,persevere with the Makaton. Sooooo worth it (I am a salt).You don't want a child who is frustrated at inability to communicate as well.

DS2 didn't walk till 20 months, but since he turned 2 last week has finally and almost overnight become steady and is running all over, climbing on everything and has really developed some toddler 'tude and started doing things like stacking and pushing cars. We're still waiting for some speech, mind, but he now pats his chest when he sees pictures of other toddlers or himself, which is brilliant progress, to me. I should really step up my efforts to teach him to sign, which have been pretty half assed so far, since he doesn't actually watch me.

He's in the system, mind, on a SLT and now an OT waiting list as well as waiting to be seen by the local ASD team.

I would say definitely persevere with the Makaton (after signing for nearly a year with DD, 22 months, she has just signed back 'hello'!) BUT have you had hearing checked--glue ear is very common and can cause speech delay. You might think hearing is OK if there is a response to loud sounds eg car door slamming, but your LO might not be hearing conversational speech properly & this can cause delay.

my little fella is 22 months and isnt walking yet. he stands leaning on furniture and has low tone but he is getting stronger. speak to your gp and see if you can get referred for physio. its done ollie the world of good. he wasnt even weightbearing or holding his own head up 8 months ago. we're just starting makaton and its hard to remember to sign allthe time but its startig to get routing now so im remebering ot do it more. ds is certainly starting to watch me more when i speak but hes not making any attempt to sign back yet but im going to stick to it and see how it goes.
i agree with arabica that getting his hearing tested is well worth while and if you can, get his vision tested too to see if its something sensory thats the problem

DD2 made enormous developmental strides between 2 and 3. Her muscle tone is ummm... variable. She used a standing frame from a year old and later a walker, but walked unaided from about 2 1/2... couldn't stand unaided until past 3 though . We started with makaton too - most excellent, but beware of rap versions of Goldilocks and the 3 bears... DD version of makaton like trying to read scribble (due to fine motor issues), but it made so much difference to her social life (!) she could join in nursery rhymes and ask for what she wanted without resorting to meltdown - a year after starting, she sacked it herself and is now entirely verbal. Make the most of the system and give whatever's offered a go!

Romy7, that is such an encouraging story. Your DD sounds very impressive! May I ask if she has a diagnosis?

THIs is one of my main fears, as most of u all know, my DS1 Jack, nearly 15 mnths....has severe epilepsy as result of malformation of left n right temperal lobes, he cannot sit up at all unaided, very floppy, altho started crawling now, but with his belly not his handsbut we have bn told from paed that he thinks he will walk but can't say for certain....and I worry like mad that he won't walk, he is such a beautiful happy little darling....despite everything, but bn refered t physio, on waiting list , n OT and SALT waiting t hear from Salt, ot coming out next week, so would love some reassurance too , as way I see it, if Jack is not able t sit unaided then how the hell will he be able to pull himself up t be able to walk? xxxxx

Arabica - she 'now' has athetoid cp - we've been around a few dx but are sticking with this one... Off to mainstream in september - all v excited! Paed said at six months - 'that determination is going to come in very handy' and boy, has it... (and I think she's very impressive too thanks!

hi cj mummy. Every child is different but I think sometimes our babies decide which areas they're going to concentrate on developing, and which can wait a while--especially when they have been ill and had loads to deal with like Jack. DD didn't look like crawling at age 10 months as she was 'busy' fighting off lots of infections and getting enough food into her tummy, which all exhausted her. But once the physio got involved, she learned to crawl really quickly, in time for her first birthday.

That;s great Romy 7. DD also v determined!

DS2 is 18 months old. He learnt to sit at 10 months, and started crawling when he was between 15 and 16 months old. Just before he started to crawl the physio told us he may skip crawling and go straight to walking. Proved him wrong there...

He started cruising at around 15 months old, but seems to be a fair way off independent walking.

He has had vision and hearing problems - the vision is resolving itself, and he had grommets inserted in November. There was almost an immediate improvement in his interest level. Now he is into everything.

We did an intensive two week Bobath course at the start of January, and now we go once a week. They have concentrated on gross motor skills, but now the emphasis seems to be towards "meaningful" play.

We feel that what is holding him back is a weak area of his back - his legs have always been stronger than his arms, and he still can't push himself up on his arms very well. We got a Jenx monkey frame today so hopefully that will give him a push in terms of head control, so one day he will walk.

We don't have a dx, but we have learnt from recent tests that he is borderline low on growth hormone, but it seems the drs are reluctant to run the full gamut of tests (till they "know more about him", whatever that means).

We also learnt today that his cerebral/spinal fluid tests have come back normal, so now we are waiting on the results of the muscle biopsy.

He improved a lot over the last couple of months but now he seems to have reached a plateau again, hopefully the standing frame will help, but it is frustrating.

We are trying to be cautiously optimistic, but it's hard to be positive some days with all the running around for tests, appointments, work at home, etc....and seeing what so many NT kids his age and younger are doing...

All the best,

My daughter has a genetic disorder (Prader-Willi Syndrome) and has very low tone (hypotonia). The paed said that when she (DD2) was a baby she had the lowest tone she had ever seen in her 22 years of being a paediatrician. She thought it would be many many years before she could walk, if at all.

Well DD sat at 12 months (albeit very squidged up!), crawled at about 20 mths, used a standing frame from 18 months, then walked at 2 yrs 4 mths. The paed was gobsmacked!

I never ever could imagine her moving, let alone walking as her tone was so low. Now she walks independently (she is 4 yrs 3 mths) but she is rather weak and wobbly and rather dyspraxic; she trips and falls a lot.

We did benefit from Portage, physio and hydrotherapy, and I am convinced that DD2 being such a stubborn bugger meant she was so determined to get going

She still can't talk but we use Makaton which is fab and opened up the world to her in that she can 'talk' to us. Her wrists are very weak so her signs to all tend to look the same, but in context we normally work out what she wants. We also use assistive technology out of the house, she has a computer machine that "says" her words for her when she touches the screen. She is just waiting for her new machine to take to school, which she starts in September.

If you haven't got it already I would ask for physio, hydrotherapy and Portage, and make sure you are seen by an experienced paediatrician who has experience in children with developmental delays.