Severe developmental delay. 18 month old boy

[sunset96]

Hi
I am looking for anybody with similar experiences with their toddler.
He is 18months old but he doesn’t look it as he is very small now but weighed 8Ib at birth. He spent a couple of weeks in nicu for newborn respiratory distress, feeding issues and sepsis.

At 18 months old he cannot pull to stand, crawl or walk. He has only recently started bum shuffling and started being able to chew some solid food. If you put him in a crawl position or try and get him to hold onto something and stand against something he screams in distress. If I hold his hands he can take some steps. He does both hands but favours his left and is much more coordinated with his left.

I am very concerned with his development as he is clearly very behind, we are on a waiting list to be seen but it is so long, he has been to physio but it makes no progress.

I am sick with worry, it’s all I can think about. Please could anybody share their experiences

That is really lovely to read and has instilled some hope! I am really not sure what is going on, I just want to help him. I really hope his case is similar to yours. Thankyou for sharing

My DC didn’t walk until around 23 months. They never crawled, only bum shuffled although were hitting all other milestones. No tests have ever shown any reason for the delay, they just walked when they wanted to. We went to physio through the health visitor and DC would generally just get upset/frustrated and didn’t really engage with the sessions. The physios are used to this and will give exercises to do at home which is helpful as you might find your child is more relaxed and you can pick times they’re in a good mood.

Are you sure your child is displaying distress or could it be more frustration when you try to get them to stand?

He screams instantly and gets hysterical everytime and always has done. I’m not sure what part is bothering him. Did your lo pull to stand? He has always been behind with other milestones too

My foster tot did end up with significant special needs, however- at around that age she saw the physio because she wasn’t weight bearing. A special pair of boots followed by splints and she made immediate progress. He may have poor muscle tone. There may be underlying reasons, there may not. The boots made all the difference.

we have been on the waitlist since May. They told us today he won’t be seen before February because their waitlist is 9 months, I have escalated and said it is urgent

Just had a call from paediatrics, they’ve expedited his case given the circumstances and he’ll be seen in November to see a complex neurodevelopment consultant

Well done on advocating for DS. That sounds patronising but it isn’t meant that way. It can be hard to advocate in those early days.

Lots find it helpful to make some notes beforehand. So you don’t forget anything. Things like developmental history, educational history at nursery, family history, anything important relating to your pregnancy, timeline of events.

Thats great news. Im shocked it took so long. Hopefully you will get some answers and reassurance.

Well done. Ask about referrals to SLT OT Physio
Portage etc
Local Drop in SEN groups

That’s great news. You were right to trust your gut and push things. Agree with others about making notes if that would help. We had a neurodisability paeds appointment and it was a long history of birth, when they reached milestones etc etc. Some people have a tendency to play things down when in front of medical professionals (or go the opposite way), so I’d say be factual and be clear about things you’re most concerned about.

It’s so difficult to know - our LO didn’t pull to stand until much closer to starting to walk and was never very happy weight bearing, which the physio assessed and suggested seemed to be due to sensory issues rather than the weight bearing itself. We got some shoes at her suggestion and they did help a little but the initial exercises we did just involved LO sitting on a stool and reaching for things (usually snacks!) so they were unintentionally starting to put weight on their feet as they shifted forward and back.
I’m glad to see your update though and you can get your DC seen soon, even where there are no apparent issues it’s reassuring to know you’re being proactive and helping them where you can. Hopefully you get some answers and whatever support is required.

Thankyou all for your help and comments, it has been really helpful. I definitely feel a slight relief that we have atleast have an appointment booked, especially given his birth history!

My brother didn’t walk until he was two not sure about the other milestones. He was basically very lazy. For some reason my Mother a teacher wasn’t bothered she knew he would do it in time. She was right nothing wrong with him. 68 now he was just a very laid back child.

So glad you will be seem next month.