9 month old boy - big delay in development

[Moonshine160]

Hi. I’m not sure if I’m writing on the correct section but I feel lost and don’t know where to turn to. Our gorgeous little boy is 9.5 months old. As a bit of background... Up until he was 3 months old he would only ever look to the right when lay on his back, this is now resolved and his neck movements are now fine but it was picked up that he has a curved spine. X rays were done and we were told that there is no abnormality, just a slight curve that won’t impact his development and he won’t need to be seen again. We were happy that there was nothing wrong. But now at 9 months old he still cannot sit unsupported not even for a few seconds, he cannot roll, no signs of crawling and his legs buckle if we try to get him to bear his own weight while holding him. If he’s in his high chair he just slumps to one side and can’t hold himself up. I have phoned the health visitors who have told me I need to wait for the 10 month review, but their next availability isn’t going to be until near 11 months. I have phoned the GP in the hope for another appointment to get re-referred to hospital but they have said I need to wait to speak to the health visitor. My instincts tell me there is something wrong with my little boy but nobody seems to want to help. It seems that he has no core strength whatsoever, we try lots of tummy time etc but nothing ever progresses. Anyone in a similar situation or know what this might mean? I’ve been reading so much online and there’s mention of cerebral palsy amongst other things and I’m so worried.

Anyone? :(

These boards tend to be a bit quiet over the holidays, particularly Christmas. Hopefully someone will come along soon.

I agree, it doesn’t sound right given his age. I hope you can see the HV soon.

Sorry I don't have any experience with this but I agree this doesn't seem right for a baby of 9 months.

The only advice I can give you is to keep making a nuisance of yourself so somebody eventually listens even if it means taking your baby down to the GP surgery /health clinic and refusing to leave until somebody sees him.

I would also get back in touch with whoever it was who told you you don't need to be seen again. That seems unusual - Paediatricians usually like to see a dc 6 months or a year later to ensure everything is going well.

It must be a worry. I'd make a GP appointment, there's no reason the peadiatric referral should be conditional on seeing the HV first.

Being discharged straight away is quite standard in my area now. It used to be you stayed under the paediatrician when DS1 was a baby (he's now 14) but more recent experience with DS3 who is 6, is being discharged as soon as the immediate issues have been addressed and told to get a referral back if really needed. Community paediatrician is now basically a diagnosis screening and sign-posting service. Unless there's ongoing medication such as for ADHD, even a DX will usually be accompanied by being discharged.

Hiya,
I didn't want to read and run, although I can't help loads, I am the mum of a little girl who does have cerebral palsy and all I can say is that what you have described could be early indication of cerebral palsy but it could also just be that he's abit a delayed but will catch up.

With CP weak core and hypotonia are common in the first year and then often stiffness/spasticity can be detected in some or all of the limbs.

I do feel that you are being let down by the health visitor and GP. I would absolutely expect the HV to have offered you a 6 month review, and if they are too busy to see you and until 11 months I don't see why the GP can't do an assessment and refer to community paediatrician who will be able to do a thorough examination. I really would push this because if there is something going on then early intervention is crucial! Physio, occupational therapy etc as early as possible can make a huge difference. If the GP still says they can't help I would look at seeing a paediatric physio privately for an opinion and they may also be able to advice you on some at home physio you can do to help him come along in his gross motor development.

How is his development outside of gross motor? Is he making lots of eye contact? Laughing? Babbling? Bringing toys to his mouth? Can he track an object across the midline (e.g from left side right across to the right)? Clapping? Waving?

I know this must be a really worrying time for you right now and I really hope that in a few months time he's caught up and you wonder why you let you let your self get so worried, but if (and it's a big IF) that doesn't turn out to the case I just want to say having a child with physical delays or disabilities really isn't as awful as it seems at first. I was devastated when I learned of my daughters brain Injury and subsequent CP diagnosis but she's just so wonderful, so funny, so happy and she's achieving amazing things despite the very bleak predications of her doctors.

Happy to chat more or answer any questions about cerebral palsy if you have any xxx

Thanks everyone. I have been into our GP surgery this morning and I have an appointment for Thursday. @Poppywood when was your daughter diagnosed if you don’t mind me asking? I am so, so scared. And if it is CP I’m terrified about what it might mean for his future. In fairness, I probably have used too many things like bouncy chairs, jumperoos etc to entertain him but he has always despised tummy time so I’ve probably not done that enough with him to build up his strength. But even now that we’re trying all these things were still getting nowhere. Other than his gross motor skills he seems ok, can put things in his mouth, uses both arms and legs, very sociable always smiling and giggling, can pick up small items and pass them from hand to hand. He doesn’t clap or wave though yet. Over the last couple of days he can hold himself up for a few seconds if he holds onto the coffee table. It’s mainly the fact that he can’t sit or roll and seems to have no core or upper body strength. I am just so scared, I feel permanently sick. Xx

That's great news that you've got an appointment for this week OP.

Hi OP Your post really resonates with me. You sound like you are in the position I was in 16 months ago.

My dd is just over 2 now. But when she was 9 months we were almost exactly in your position. My dd couldn't sit for long certainly wasn't standing. I couldn't even have her sit in the shopping trolley I always had to put her in the lying down baby ones even though she was close to the weight limit. She hated tummy time with a passion. I remember feeling that guilt too that I didn't make her do it enough. But when your child HATES it it's almost impossible to make them do it.

She started physio at about 9 months and it made all the difference. She could sit confidently by 1 year (although she would get tired). She started to crawl at 14 months. She (finally) took some independent steps at 25 months (not really walking yet though but can do about 7 steps at a time).

We have no diagnosis yet but I wanted to say when you get help it makes all the difference so push for it as much as you can.

It's bloody hard but you're doing your best for your little boy. Sounds like he's charming and lovely. happy new year xx

@greatandpowerfulozma thank you, it’s nice to know that I’m not alone and someone else was in this position. I am definitely going to push for physio, but with him already being 9.5 months I’m a bit worried now about how long we will be waiting for appointments. I feel guilty for not pursuing this sooner, I think I’ve buried my head in the sand and listened to too many family and friends telling me he will do things in his own time. But my instinct tells me something isn’t right. I am glad that things improved for your daughter. Was it just her gross motor skills that she was delayed with or have you had concerns about other areas too? X

Please don't feel bad. Your pursuing it now that's what matters. Sounds to me like you're a lovely dedicated mum. It's so hard to know what is "normal" when it's your first baby. And you're right everyone around you is keen to explain away problems to reassure you. I know this comes from a good place but it makes you feel like "that mother" making a fuss over nothing.

My wake up call came when I took dd to a friends to use her paddling pool with a few others. The other babies were sitting and staring to stand and splash and have a feast time. Dd had to sit in a bath seat and she couldn't support her head so we had to go home. I started being more pushy after that.

Big hugs to you. It's hard when your baby is different but he sounds like a charming really lovely little boy and they can and do make brilliant progress some just need more help. Xxx

Sorry to answer your other question it has been mainly gross motor but yes there have been other general delays. Things like clapping hands and pointing came quite late (but in the normal range the late side of normal though).

Her speech is coming on fantastically now still not as advanced as some 2 year olds but going in the right direction. She's very social and makes good eye contact etc. Every paediatrician we've seen so far has said it appears to be a more physical than mental issue but time will tell.

Thank you. That’s made me feel a little more positive. We’ve been to the GP this morning who was absolutely useless. I actually cried in there. He said that this is something for the health visitor to deal with and not a GP and that I shouldn’t be worrying until he’s 1. I tried to stand my ground and told him that my instincts is that something is wrong, but he said he looks totally fine, his arms and legs seem strong and he will do things in his own time! I’m going to speak to the health visitor again but no one seems interested.

What a useless waste of space that GP is! So now keep ringing the HV and making a nuisance of yourself until she agrees to see you.

I'm sorry I don't know what HVs do these days but do they still run baby clinic sessions which you could go along to?

I'm so sorry that you have had such a negative experience at the GP. While it's true that lots of babies do things 'in their own time' that's not much use when you are so worried! My DD is now nearly 4 but she needed a lot of physio when she was younger - poor muscle tone and hypermobility meant she hated tummy time and didn't support herself on her legs until she was about 14 months. The physio was brilliant for her (although she hated it too!) Is there any way to refer her directly to the physiotherapy service without waiting for the HV? Or go privately if that's possible for you?

I'm sorry you encountered such an unhelpful utter prick "professional". There really is nothing you can do to reason with that type. It's utter nonsense, you don't even have to have a HV so he's talking out his arse. You'd be well within your rights to make a formal complaint, but I can totally understand if you'd rather not.

Like pp have said keep, pushing for a HV appointment asap.

Can you go to a weigh in clinic and chat to a hv there maybe? There might be a sticker in your red boom telling you where / when they're on.

It's so different in each area. I had the opposite issue I went to the hv first but was told only a gp can make a referral.

I'm sorry they didn't help you. Sounds like you'll have to push for help elsewhere and maybe ask to see someone else at the gps if the hv is no help. Don't panic you're doing all you can.

Thanks all. Unfortunately the area where we live don’t run weigh in clinics anymore, they stopped them in October 2018. The only group in my area where HVs drop in is a breastfeeding group which is only open to mums breastfeeding or mixed feeding, I stopped when DS was 7 months so I’m not sure if I’d be able to go! I’ve left yet another answer phone message with the health visitor and in the meantime booked for DS to go back to the osteopath on 9th Jan. she’s quite good and it was her that originally picked up on his curved spine when he was 5 months old so I want to see if she can help. It’s private so quite expensive but worth a try.

Quite honestly if services are so dire in your area, I'd drop in at the breast feeding group regardless, but wait until all the breastfeeding mums have seen the HV.

Your DS sounds very similar to my DD. She’s 7 months and can’t roll, hold her head up very well, definitely can’t sit. She can’t hold toys in her hands. Physically she’s not dissimilar to a giant newborn!
I’m sorry you are hitting so many brick walls getting your DS seen by anyone. In our case, I took DD to A&E at 4 months as thought she was having seizures (still not 100% sure whether she was or not, tests are inconclusive) so they admitted her and it was the consultants in the hospital who noted her low muscle tone, at 4 months I hadn’t really been worried.
Since then she’s had two EEGs (for the possible seizures) an MRI scan and blood tests for genetic and metabolic conditions. Nothing has come back positive as yet but still waiting on some bloods and the MRI.

I completely get the sick feeling you have, this is how I have felt on and off for the past 3 months but my DD is such a happy smiley girl and I’m trying hard not to dwell on things. Her consultant said his gut instinct is that she has some kind of genetic syndrome but what that actually could be is anyone’s guess at the moment.

To give you an idea of timescale, she was referred to physio at the end of October and her first appointment will be mid February so it has been quite a long wait but the previous responses on this thread make me hopeful that it will be useful once we actually get going with it.

Hiya sorry for late reply.
My daughters story is abit different, she was born at 31 weeks and a routine cranial ultrasound picked up significant brain damage at just two weeks old. From that moment we knew she was very high risk for having cerebral palsy, she wasn't officially diagnosed until about 18 months, but we knew for sure from about 9 months that she had some kind of CP. they really don't like diagnose it early unless it's severe and overwhelmingly obvious or like my daughter they have a brain scan which clearly shows brain damage linked with CP. this is because so many children do catch up! A diagnosis before age 2 is rare.

The bonus of us knowing very early on that she would most likely have CP was that we could start therapy straight away! She's had weekly physio since she was a couple of months. We now do weekly physio, hydro, brain plasticity programme as well as lots of at home therapy. Her predication from the doctors from her brain scan was severe quadriplegic CP, but she actually has moderate/mild spastic diplegia (affecting just her legs) - she's just starting to take steps with a kaye Walker at 30 months, And she's bright cognitively - talks better then some three year olds, can count to twenty, knows colours, shapes etc so think it's just a physical disability.

It's a really positive sign that he's social and meeting his cognitive and social milestones and possibly means his delays aren't linked to ASD (which can cause motor delays too).

Your GP really is failing you, I hate the 'wait and see' attitude when it's been proven that if something is wrong early intervention is key! It doesn't surprise me though, even with my DD having significant brain damage and being told she will most likely have CP there was still no proactive therapy given - we were just sent home and told to wait and see! We had to do it all privately until she was around 1 when NHS and children's services started to help more - but even now we have to pay for most of it, until they get to school age provision is just really poor in some areas.

I really hope the HV is more helpful and they don't keep you waiting. In the meantime you tube has lots of good paediatric physio videos you can watch. If he's not rolling yet start with some assisted rolling - start with his legs and get his body to follow through the movement. Side lieing and using hands to play whilst lieing on their side is good for building core strength too if he's not tolerating tummy time. Have you got a tummy time pillow too? He might prefer it with that. Swimming is also great!

Keep strong mumma, I promise you reality is never as bad as what you are envisaging in your head. Even if something isn't quite right, it won't change him, he's still your gorgeous little baby and you will both grow and adapt and it will be ok! Xxx

In our are we can make HV appointments like GP appointments, can you do that?
I agree late sitting is worrying but it may be within normal limits IYSWIM.

@AdamantEve thank you for sharing, it is really reassuring to know I’m not alone. That’s quite a big timescale for the physio isn’t it! I’ve only heard good things about the physio though so hopefully things will massively improve for you from then on. I’m going to keep pushing for a referral for my DS.

@Poppywood thanks so much for this, it sounds like you’re doing so amazingly well! I do think it’s so poor though that you had to go private for anything to be done quickly, but then again I’m also in the same boat as we are going to a private osteopath on Thursday that specialises in babies. She probably won’t be able to help in the same way as a physio but she’s very experienced and I’m hoping she will give me an opinion that I can at least feed back to both the GP and HV and keep pushing for something to be done. I never even considered the YouTube videos, I’m going to do that today. Thanks so much!

@drspouse yes I believe we can, because when DS was 3 months and I was having breastfeeding issues a health visitor came out to my house for an appointment the following morning! I’m just getting nowhere this time and I’ve been told I’ll just have to wait for his 10 month review. He’s 10 months in less than two weeks and I haven’t even had the appointment letter through yet. I rang them a third time to chase this up and they said it could be between anywhere and 12 months

Thanks for all your reassuring messages, I will update after the osteopath on Thursday x

Sounds like your area is cutting services so this is probably a long shot, but in my area the physiotherapy service has drop in clinics you can go to. Often there's a bit of a wait if lots of people turn up, but they do see everybody. If you Google your local authority name plus "Local Offer" you should get a page with all the services/support groups etc. for special needs, and then search in that page to see if you can find anything for physiotherapy or any more general child development services or parent groups that might be helpful for identifying resources and how you can get into them. Worth a shot.

Our DD was behind physically on gross motor and for her in retrospect it was a mix of hypermobility and sensory issues (eventually Dx'ed with autism but I want to emphasise that although at the time that would have seemed like a terrible outcome now I know more about it it really isn't - she is just DD and is brilliant and a very happy kid and largely caught up physically, other than taking after her parents general lack of sportiness). Having been totally unwilling to put weight through her legs as a baby and being a very late walker and never crawling, she now loves climbing frames and soft play and all that stuff and will run around with her friends and play chase or superheroes or robots or whatever they are playing. She had a block of 10 physio sessions between about 20 months and 24 months or something like that I think (I remember it covered the period when she was taking her first few steps, but still holding on) and I think they did help. DD also hated tummy time and I felt guilty for not doing it but in retrospect I think it wouldn't actually have helped: she hated it because she was too weak to even lift her head in that position, and it just would have traumatised her. What I found she could tolerate was being inclined forwards a little bit on my chest (so I'd cuddle her to my chest and then lean backwards myself, so she was leaning forwards a little bit). From that position she could lift her head and she didn't love it but it also didn't send her into a panic, and I think she did strengthen quite a bit that way. After a while she would do tummy time with her chest propped up with a small firm pillow (I think it was supposed to be a neck support for an adult).

The thing our physio emphasised was that any activity is good. So find whatever activity your child likes to do and can do and focus on encouraging more of that, or make it a tiny tiny bit harder for them to provide a bit of challenge: you can't base yourself around milestones of what your child "should" be doing. It has to be something they basically enjoy and can do (with a bit of effort) or they'll just get discouraged and not be engaged in wanting to do more.

I hope you get some useful feedback from your osteopath later in the week.

Push push push on is all I can say! No one else is going to fight for your babies corner so do it. Don’t take wait it out for an answer.. ask to be referred they know early intervention is crucial regardless of age. And for your dr and HV where is the passion and care in these professionals :( sorry they haven’t been helpful .. my dr was similar when I addressed my concerns about my dd’s development but HV is somewhat helpful and coming out to see us next week despite our checks are not till 9-12m and my girls only 6m. Take care X