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

How are other aspects of his development, OP? Does he seem to have normal understanding, some speech etc?

That’s very stressful for you. My DD didn’t walk till about 22 months and never crawled, only bum shuffled. She did physio but she hated it and cried the whole time. I would also be curious about your son’s speech and other milestones. Is he generally happy?

For my DD we did all kinds of blood tests (though no genetic testing) but no particular diagnosis or syndrome came up. I still suspect there must be something underlying as she never really caught up with gross motor, but intellectually she’s been on track or advanced.

That sounds so stressful OP. Is your health visitor involved? Do you have a partner/support?

You are right to worry and it’s aweful that you have to fight for help. Don’t give up. If he’s screaming in distress then something is definitely wrong, there’s a reason he can’t do things he should be doing don’t let him get further behind x

It may not be possible but if it is I’d go private. The early tears are so important and I hate that NHS waiting lists are a barrier to targeted early intervention

You need to get off that waiting list and somehow find a way to have him seen privately asap.

Isn’t he seeing a doctor or specialist?

I think you need to pay up and go private. I wouldn't wait years for a diagnosis.

His speech is behind, He says mama sometimes but he is now very vocal. He is a very happy boy, he laughs, he smiles, he waves at every person that walks past him. He can clap, wave and point. He was slow with eating solid foods and has only recently been able to move off of mashed foods and can chew soft foods like bread etc. I just don’t understand what could be going on with him, I don’t know if there’s a link between him now being small and being behind. He’s also had surgery on his kidney but the specialist said there should not be a link to his development.

His speech is behind, He says mama sometimes but he is now very vocal. He is a very happy boy, he laughs, he smiles, he waves at every person that walks past him. He can clap, wave and point. He was slow with eating solid foods and has only recently been able to move off of mashed foods and can chew soft foods like bread etc. I just don’t understand what could be going on with him, I don’t know if there’s a link between him now being small and being behind. He’s also had surgery on his kidney but the specialist said there should not be a link to his development.

We paid to see a private physio aswell as the NHS and they just said the same thing. He gets so distressed they can’t really work with him

We are on a waiting list

My DS didn’t start crawling until 14 months. Didn’t walk until just over 2 years . Gross motor was severely delayed as was speech. He didn’t start waving and pointing until just after 2 years. Lots of sensory issues. I spoke to HV at 14 months as he’s a twin and there was a stark difference between the two. Same with food, solids wasn’t established until 14 months. Has behavioural insomnia as diagnosed by paediatrics. They didn’t refer to physio until 22 months.and he is under speech and language. He’s now in the process of paediatric and autism assessment. He’s come on loads now so there was some delay, but he’s getting there.hope this helps

Is it a waiting list for paeds you are on? If so, was the referral marked urgent? If not, I would ask the GP to do an urgent referral. I would also call the hospital and ask about cancellations and make it known you can do short notice.

Has DS been referred to SALT? What about OT?

As well as the normal SALT/OT/physio services, some areas have drop in sessions for young children. It is worth looking if your area does.

If your area has a Portage service, has DS been referred to them?

Some HV services have specialist HVs for DC with significant delays, check if your area does if DS is not already known to them.

Is DS in nursery?

Have you applied for DLA for DS?

Depending on where you are there may be organisations who can provide more support. For example, Paces in Sheffield, the Rainbow centre in Hampshire and Ingfield Manor School in West Sussex offer free sessions for young DC. There are other places who offer sessions as well, some free, some charge, but I can’t remember them off the top of my head.

Hi Thankyou. This is really helpful! I think the referral was for community paediatrics. He is under OT etc but have only been seen a couple of times. The physio he hates and screams. He is in nursery and I thought maybe this would but he doesn’t even attempt to pull up to stand or go on his hands and knees. If you put him in that position he gets hysterical. I’m not sure what portage is I will have a look into this and check on Monday if the referral is urgent. Thankyou !

It sounds similar but he won’t even go on his hands and knees he will just scream if you try and put him in that position

Get referral to paed / keep calling for a cancellation appt

An issue eg kidney may be part of the picture. You could image search a photo of his face in case it matches typical features for certain syndromes . You can search xxx kidney issue + developmental delay . Then take a list to paed. Could it be xxxx .

I would chase OT. DS needs more than a couple of sessions.

If DS hasn’t been referred to SALT, I would sort that too.

What support is the nursery providing?

Portage is a service who supports developmentally delayed young children. Not all areas have a portage services and some call them other things. However, in some areas, they don’t support DC already in nursery.

The nursery aren’t really providing any additional support. I feel like he’s just going under the radar because he’s so happy everybody thinks he’ll just do it when he does. But I’m worried sick

Are you wondering about Cerebral Palsy? Or a genetic condition? DS has mild spastic diplegic Cerebral Palsy and that doesn't sound very like your son, but favouring one side is sometimes an indicator of the hemiplegic type. You can also have swallowing issues.

Edited to add if you do suspect CP you need to ask for a brain MRI.

What has your health visitor said? They see children like this all the time.

Request a meeting with the nursery. They should be providing support. If they need advice on how to support DS, they can ask the Area SENCO for advice. If your area still has them, they could also ask for advice from the specialist teaching service. They could also request an EHCNA (you could also do this).

It has crossed my mind multiple times, I have done a lot of reading and there are things that to and don’t align to cerebral palsy that he has shown

They made the referral to physio and OT but she has a wait and see attitude