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 sounds very stressful OP. I have a toddler boy who has been developmentally behind at various points and still is in some ways. Born very prematurely so different background. At 18 months, he couldn’t walk and was saying very very little so we went to the GP and got referred quickly into a multi disciplinary paeds setting. He saw audiology and had hearing loss diagnosed (explained the lack of speech and corrected with grommets, now he’s flying on that front), had physio and OT. Started walking shortly after the appointment but remains behind on gross motor (can’t run or jump at 27 months). Cerebral palsy is in the background for us - also favours his left side and as another poster said, that can indicate one type. I’m not sure if any of that is helpful as he wasn’t quite like your son at 18 months, but I do think that kind of multi disciplinary overview would really assist your son too. How long have you been waiting? I thought with developmental stuff they move quite quickly because they’re such critical years and that was our NHS experience. Maybe go back to the Dr and reiterate your concerns and see if you can get a referral to audiology to rule out or in heating? Just ideas. Oh and how small is he? My son is very small too (2nd centile height, maybe 15th weight), but again prematurity and genes means that’s not a super concern for us, he’s healthy.

Thankyou for your message, that does sound similar! I’m definitely going to contact HV and doctors on Monday to see if I can push things along as I am so worried. Like you said these years are so important. He is 18 months tomorrow he is not on the chart for his length and his weight is around 9th. When he was born he was around the 50th

I would ask the GP/HV to write to ask for the referral to be expedited. If he hasn't been referred to SALT and Audiology, he needs those referrals too. Nursery should be involving the area SENDCO, he doesn't have to have a diagnosis to have his needs supported.

That sounds like a good idea. Sometimes you have to be a bit pushy. And if you haven’t been referred into a broad developmental assessment, then there’s no harm in pushing for a hearing test while you wait. It’s helpful if different bits of the puzzle get solved - the hearing issue being resolved was massive for us. Have a look at the 18 months ages and stages questionnaire and score your son on that and bring it to the Dr and HV. We had an extra HV appointment around 18 months and we did this. But really my GP was the most helpful and the portal to all the other assessments. Best of luck OP

Thankyou so much! I will look into the hearing test!

Just to ask about the speech, you've mentioned that he says 'mama' occasionally. Does he say anything else? DD didn't manage mama until 22 months, but was saying other words (including dada) before that. By 3 her speech was advanced, and she's currently on track for 8/9's at GCSE, so being a little slow to start speaking hasn't hampered her academically.

Have you been to the GP? Health Visitors are the first point of call for development issues but with there being issues with growth I'd go to the GP, they may be able to make an urgent referral to paediatrics.
My DS was referred to the child development center by HV for development delay but for medical issues (not growth) he was referred to paediatrics at the hospital by the GP. If you've been referred to the peads at the child development centre they may not get able to address his needs and you could end up on another waiting list.

No he does not say any other words just a lot of noise

We have been to the gp a while ago and between the doctor and HV they made a referral to community paediatrics. I am unsure if he would need a referral now to a different paediatric service

My niece had this. She was diagnosed with CP. She’s now about 16 months. She was referred at six months.

What were the main signs of you don’t mind me asking ?

This must be so distressing for you OP. When my foster DS came to me at 5 with diagnosis of Developmental delay, Feotal Alcohol Syndrome and autism. He was in lowest 2 percentile for weight and 3rd percentage for height. He was in 18 months to 2 years clothes. He was very far behind his peers. He didn't know any colours or animals except for a dog. His eyesight was very poor too. His speech was hard to understand and he only knew a few words and phrases. The optician put a patch over what they called his good eye, even though this eye was +6, to make his lazy eye which was +30 to work. It was very very slow progress. It was also frustrating because he should have been starting school but he went to a SEN nursery for a year instead then started school, reception year, a year late at 6. He was in a special school until 16. From 14 he made rapid progress. Then he went to college at 16 and bloomed. He stayed at college for 3 years instead of 2 because he had to do his level 2 exams first then move on to level 3. He's 20 now and at uni. Expect the long haul but don't give up because developmental delay means just that. It will take him longer to do things but don't give up he will eventually do things. The thing I found weird was that he didn't lose his first milk tooth until he was 10. Most DC lose them at 6 or 7.

Thankyou for sharing your story! It sounds like your son lives a wonderful happy life and has made such great progress!

Main sign at 6 months was only using one hand. Couldn’t roll. Now at 16 months, she can’t crawl or cruise or walk. CP also affects her leg on the same side.

He couldn’t roll at 6 months, he was late with rolling. It took him a really long time to reach for toys when he was small too. That was when I first raised a concern with the HV he wouldn’t reach up to toys on his baby gym. He can’t crawl, cruise or walk. I can’t say I have ever really noticed a difference in his use of one hand only that he favours his left and is much more coordinated but he does grab things with his right hand too. Did your little one get upset when you tried to get her to crawl etc?

Can you google and see if you can access portage - it’s really helpful and also can you self refer for paediatric OT and SALT.

The fact that his speech is behind along with his motor skills, I would want some genetic testing done.

Good luck, he's very lucky to have you in his corner.

Do you have a date for the paediatric appointment? I think I only had a 3 month wait between Dr appt at 18 months and seeing the community paediatric team. Hopefully you have an appointment even if it’s not very soon - I’d follow up if not. Not all children crawl before walking (I’m sure you know that) so not crawling doesn’t wave a red flag to me but not cruising and the pain that seems to be experienced on standing and in certain positions does. 18 months is also the point at which services start to take you seriously if you’re child isn’t walking (although there are children who walk later for various reasons, hypermobility etc). All to say that I’d be going back to the GP, calling HV this week, chasing up the appointment and hopefully you get seen soon.

Thankyou! We have been waiting a while so I chased this morning and they are going to come back to me so I’ll give them a couple of days and then chase again! I tried to reassure myself before about the not crawling but like you said he is 18 months now so you’d expect to see him pulling to stand etc

It doesn’t seem like it’s available in Essex

If you are in Essex, you need a referral to the Early Years Team - Pathways of Support.

Thankyou! I will look this up

I have a story which may give you some hope, although my ds2 never had any feeding problems and was born at term. We were referred to physio when he was 12 months because he wouldn’t weight bear at all and wasn’t crawling. He could sit up but was very unsteady and needed support well beyond what was average. It was a big shock in comparison to ds1 who crawled at 7 months and walked at 14 months! The physio mainly kept an eye on him and gave us exercises. He was tested for muscular dystrophy.

like your DS, he bum shuffled instead. Apparently it takes bum shufflers longer to walk anyway even without problems because they can carry things in their hands unlike crawling, so there’s less incentive to walk.

He’s 8 now, doesn’t have a diagnosis of anything except hypermobility, his teachers all tell me what a pleasure he is to teach, he even won 3 out of 4 races at sports day last year! (Not that I care about things like that, but it’s hard to believe it considering I used to worry he’d never sit up or walk!) He walked at age 2, but was unsteady on his feet for awhile and for a few years he was always behind his peers physically. Learnt to ride a bike at age 5. I think he MAY be dyslexic but that’s really the only concern I have.

Just looked back at photos on my phone to give you an exact timeline

Ds2 first could weight bear at 18 months if you put him in a standing position holding onto something (but was bent over/couldn’t stand up straight)
Pulled himself up to stand at 19 months
Cruised at 20 months
Walked supported at 21 months
Unsupported at 23 months