developmental delays

[sallymally14]

HI Im new to this site but feel I need some advice from somewhere as I am so worried.

My niece is 17 months and can only sit, a sweet little thing very quiet and not very demanding at all, she has always slept a lot. She has a terribly misshapen head which the HV and doctor apparently says will sort itself out as she gets older but it is very severe, I think she got it because she has hardly ever really moved much and slept so much. They weren't offered any treatment for it and were told that they didn't really advise the helmets as they didnt work and are very expensive so a waste of money so they didnt go down that route.

As a baby she was sort of soft to hold I can remember thinking she wasnt like my children. She was about 8 months when she sat on her own.

She eats well, can finger feed herself, has good eye contact, didnt smile much at first but smiles more readily now and laughs. She comes across as a very gentle little thing, no trouble at all. Too good really in some ways. She doesn't say much but does seem to understand what you say. She's interested in things in a quiet sort of way but is quite happy to just sit.

My main concern is that she doesnt move at all. She just sits, she can reach forward to grab things but if they are out of her reach she just cries. Its as if she doesnt want to use her legs. She can stand on her legs with support if encouraged but doesnt like it and wants to be picked up. She wont walk if you hold her hands. Shes sort of wobbly from the hips as if she hasnt the strength. She can lock her knees. She doesnt crawl or bum shuffle and doesnt pull herself up. She cant even get herself into a sitting position if she is lying down. She can roll onto her side but wont roll onto her front. If you put her on her front she rolls onto her back and then lays there.

I have tried to bring it up several times with my sister but she just says that she has been told by the HV that she will do it in her own time therefore shes not concerned. I think she is annoyed with me for mentioning it. Surely its time to have her checked out but its as if my sister is denying anything is wrong. Am I wrong to worry. I don't want to upset my sister, I think she thinks I am just comparing my children to her. Its so difficult. I do so hope that she is just taking her time but I find it so worrying. When will anyone be concerned? Shes not due to see anyone until she's about 2.

I have read that this flat head can cause developmental delays but my sister was told that that wasnt true by her doctor and HV so I dont like to say anything.

Has anyone else had these problems. How much should I say or should I just wait and leave it up to them? I cant understand why my sister isnt worried. She didnt seem worried about the head either I think because the medical profession seem to make light of everything. I suppose we all hear what we want to hear at times. Maybe the medical profession is right, I do hope so, as I feel they are wasting precious time, surely the earlier you get help the better. Do you think it is a matter of saving money in the NHS that they leave things so long. Do you have to push for help or is it just where you live in the country as to how much help you get?

Has anyone had a child like this at this age and then everything turned out OK?

[salondon]

Are you saying that the HV isnt worried that the child isnt meeting the developmental milestones? If yes, then your sister can take her to the GP and ask for referral to OT, dev Paed as well as Portage.

I think if nothing has happened as yet, then she certainly needs to push.

As for your sister feeling a bit unsure about talking to medical professionals, that can happen, however, just have an open chat with her about early intervention, without comparing to other children, KWIM?

[whenwilligetsomesleep]

I would encourage her to go to the gp My personal experience with health visitors was patchy. My family were really helpful with me by gently telling me my son wasn't reaching his milestones at 18 months. I think I was in a fair bit of denial. My mum ended up showing me a chart of what he should be able to do and he wasn't even close. The GP was brilliant and referred him to a developmental paediatrician.

[sallymally14]

The last time she saw her HV she told her that all babies develop at their own pace and they dont even start being concerned until they are over 18 months apparently.

I did try to suggest maybe she needed some physio but my sister just seems to think its better to wait, she thinks Im worrying too much,she is convinced that its just time. Maybe she is right. She did mention it to the GP when she went for something else but he just said go and see the HV if you are worried.

I could understand it if she was crawling, pulling herself up but just not walking but she doesnt move at all.

[sallymally14]

I think because my sister isnt saying she's worried no one else is. We have discussed milestones etc but she just keeps repeating that all babies are different.

What can it mean not moving at this age. Im finding it so worrying, the more I see her the more I worry. Its very stressful not being able to do anything. Could it really just be late development.

[willowthecat]

It's a difficult area but this sort of 'wait and see' , 'go and see someone else who is not interested either' really annoys me and brings back a lot of awful memories of being treated like that. Unfortunately it is standard practice to play down and ignore parental concerns - because they have their own timetable for when they want to identify the issues and they are not interested in having the schedule advanced by 'pushy parents'. Yes it is all about saving money and fits in with a prevailing belief that children either develop normally or they don't - and if they don't it's not cost effective to offer early intervention services. Having said that, it's hard to know from what you say whether there is a real issue or not but if I were your sister, I would look for a professional opinion privately to at least get some sort of indication one way or the other. If that's not an option, hammering the NHS routes until you get a paed referral could help but again they may not advance things much - at least that was my experience. I was repeatedly told to come back in 6 months, I was skeptical at the time, but after having a 2nd child who developed normally, I am really angry that I was fobbed off so easily as it was really 100% totally obvious that ds1 had missed nearly every milestone in the book - by several miles !!

[babiki]

SallyMally, she is not moving because something is preventing her. Unfortunately in UK preventative checks and kids Physio are atrocious. I feel very guilty I didn't take my son earlier for a physio etc - he was very similar to your niece, sitting happily on his own, not attempting to move. Now I know his poor balance, motor planning and coordination prevented him from doing so.
If HV and GP are both crap, the best way is to get private physio - she will not only do detailed assessment but will also create exercize programme. Most people do use private professionals to com

[babiki]

Sorry silly phone...
Basically there are many of us who have been fobbed off by HV, GP etc.
Our GP finally relented once I showed him the private physio report. Then it takes months on wait list to see NHS OT, Physio and Paedetrician - early intervention exists only on paper here.

[sallymally14]

Thanks babiki, so may I ask are your sons problems common in these cases and was it sorted out with physio. You say something is preventing her from moving. What is motor planning? What causes these problems?

I have suggested getting a private physio but I think shes in denial also the cost maybe a problem Im not sure, they have just moved house.

I think I just needed to speak to someone who recognized her symptoms because I have never known a child not to move.

I agree with what willowthecat said they do seem to have the attitude of wait and see and dont say anything to worry the parents.

[babiki]

My son's label at the moment is global development delay, he started crawling at 18 months, walking at 2 and a half years, now he is almost 3 and a half and in some things at the level of a 2 years old, some much lower ( self care). We don't know the cause, all genetics investigation etc came back clear: this is very common ( 50 % of delayed kids).
Most cases low muscle tone is common - this would be picked up by the Physio... Motor planning: for example we had to teach him step by step how to get off a chair, he couldn't do the sequence of movements on his own. He still can't walk on the stairs... We do lots of exercises.
I understand the denial bit - not sure how to approach it tbh, if it was my sister she listens to me as I'm more 'experienced' iyswim.. Maybe you could offer to pay for the assessment?
I do think my son will always have a disability, in most cases the global delay gets changed later on into learning disability or something else. But that doesn't mean your niece is the same!
Also, if Physio/OT identifies problems, she could be getting DLA, which can be used for therapies.
Is she your sister's first child?

[sallymally14]

Yes it is her first child, she is a dear little girl and my sister obviously adores her, I can understand that you dont want anyone to tell you something is wrong but then on the other hand if she was my child Id worry so much Id have to find out.

I hope, although not entirely sure, that her other milestones are still within normal limits but at times I think she looks and behaves like a lot younger child although that may be because she just sits. At first she wouldn't even take any weight on her legs she would just bring them up like a frog although now you can make her for a couple of minutes then she'll cry. Most babies want to walk, weightbare. Its almost as if she ignores her legs doesn't want to use them. She does kick in the bath and does seem to enjoy swimming but of course thats not weight baring is it.

Thank you for sharing with me your sons problems I do hope and pray that he continues to improve as he grows, some say that children can learn to overcome some disabilities.

I may offer to pay for the physio but am not sure how she would take it, I dont want to look as if im interferring or anything.

[babiki]

Thank you, he is great little lad!
I do think docs will pick up on her problems eventually, it's just such a pity to lose the valuable time for an early intervention...
The best would be to get her crawling, crawling is very beneficial movement... I just looked if I still had the first exercises we got ( when ds did not move at all, only sat) but can't find them - will have a l

[babiki]

... a look in the evening again and let you know. It's nothing difficult, perhaps if you tried you sister would see it's beneficial: they are all aimed at strengthening the core muscles - without it crawling is impossible.

[sallymally14]

Yes I can see that she may be lacking core strength, she can sit OK and her head/neck strength seems OK but when you stand her shes sort of wobbly around her middle/hips. When she is lying down she tries to roll onto her side which she can do but then cant seem to get the strength to pull her body up or get into a kneeling position so she just lays. If you put her on her front she can lift the top part of her body up and her legs like a boat shape but cant lift herself up on her hands and knees. I think she is lacking core strength as well as leg and arm strength. Exercises would be great to have but I will try again with the physio. Thank you so much. How old was you little boy when he was picked up?

[babiki]

She sounds very similar to my ds at that age! When he was 12 months I went to GP who fobbed me off with stories about Einstein... About 2 months afterwards I found private physio - the effects of exercises were quick and he crawled very fast by 18 months - should have done everything much earlier... When we finally got NHS physio, she was totally useless anyway - she never even touched him, they watch the child, call it assessment and give generic advice like take him swimming or to soft play and 'You are doing everything that can be done'... Rubbish. If I had the funds I would have got him a Bobath therapy as well and hydrotherapy. Cranial osteopath can be very good too.

[babiki]

I looked at your first post again - I thought she is 11 months, not 17:( At this age she is very delayed, if there is no movement at all - even GP should be worried now!

[MareeyaDolores]

Physio is good but not a substitute for the GP.
Not moving at nearly 1 1/2 means needs vitamin D checked. And maybe iron.

[MareeyaDolores]

If your sister isn't very pushy, you could always go along to 'help' her with the baby at the GP and HV appointments

[babiki]

Good idea mareeya, at this age they should start all the investigations asap..

[sallymally14]

I think she is waiting until she is 18 months before taking her back. Shes been recently for a minor problem but I dont think brought the subject up and I suspect wasnt asked.

Thanks so much for all your advice I was starting to think that it was me worrying too much, I just didnt know who to discuss it with I dont like to talk to friends behind her back. I will definitely try and get her to go back and ask for a referral as you say she is getting near the 18 months now. I do hope and pray that she is OK. Its funny I have always had this feeling that something was not quite right from the first time I saw her.

I did talk to her about Vitamin D deficiency because I saw an article about it but she just dismissed it. I don't know how common it is or whether it causes problems at this early age.

[babiki]

Sorry don't have the exercises anymore :(
You are really lovely for being concerned btw.
Once the GP is on board, he should refer to developmental paediatrician, who can start proper investigation. Just for you to have an idea, my ds was referred to geneticist, neurologist... He had MRI done, lumbar puncture, nerve conduction studies, see OT and SALT regularly.
If the GP is reluctant, it does help to show him report from physio detailing the delays.

[MareeyaDolores]

Occupational therapists are almost always lovely, well-connected to other service and usually very on the ball. And in a lot of areas parents can self-refer

[sallymally14]

Thank you for looking anyway Babiki it was very kind of you. I spoke to my sister yesterday evening (after hearing all you advice) for quite a long time and think she will try and get referred now.

I worried all night about her and how she must be feeling. Im sure she realizes that there could be a problem she probably just doesnt want to be told that there is, I can understand that but as you say the earlier its addressed the better. Although now I feel concerned that we are so late, Ive been thinking lately that her little legs are quite thin as if there is very little muscle but I suppose if she is not using them the muscle will waste but then I dont think she was ever very muscular.

Ive been trying gently, maybe too gently, to get her to do something since well before Christmas but when she had her 12 month check they said everything was fine and that she`d do it in her own time! I was amazed at the time I thought they would have at least kept a check on her but they didnt they said theyd see her again at 2 years. I cant believe how unconcerned they were I had had worries for months by then and Im not medical!

Do you think she may need the other support services as well as physio and if so does it make a difference if you go privately first for physio?

I must admit I have always focused on the not moving problem, she is much quieter than my children were and she doesnt have as many words but I try not to compare too much because Im aware there is such a variation. Is it just routine that they refer to all the services? I think my mind is working overtime now!

[JoinTheDots]

Hi there,

my DD was almost exactly on this timeline - she sat at 8 months, and that is all she did for ages! Everyone said she would get there in her own time, but at 15 months when she still was not doing anything, I took her to the GP. She was referred for physio and to see a developmental paed as well.

She was diagnosed with hypermobility syndrome, and was a very floopy baby, just as you said. One difference is she was never much of a sleeper! And has a pretty normal looking head (although its a bit big, her summer hat this year is for age 5, and she is not even 3 yet).

After the physio, she was walking before her 2nd birthday. We had to go back to the beginning with her - lots of tummy time, getting her to learn to roll, then helping her learn to crawl and finally walk.

The developmental Paed said DD was overall delayed by about 6 months at first assessment, but felt she had caught up by age 2 (albeit only just, and i still see her as behind her peers especially with speech and language)

We had all NHS services, and they were great.

Not all situations are the same, but just an example that overall ours was a positive experience, and my DD sounds almost exactly the same as your DN

[sallymally14]

Thank you JoinTheDots, its so nice to hear that someone with similar problems worked out OK in the end with help. I hadn't ever come across a child who just didn't move. Did your little one start her physio at 15 months then or later? Was she diagnosed with this hypotonia as well that I keep reading about? It sounds as if they often go together, you said she was a floppy baby.

I do hope your little one continues to improve, it sounds as if all will be OK
Thanks again you have reassured me a little. I keep reading things on the internet and it gets quite frightening.

[JoinTheDots]

Hi there, yes DD started her physio at 15 months, she was not even holding her own weight at that point, no rolling, nothing. She was not diagnosed with hypertonia, but obviously had very little muscle due to little to no use.

She still needs help with stairs, Cannot do as much for herself as other children (getting on the loo, helping get herself dressed etc) as other kids her age and won't play on the big ride on cars because her legs are not strong enough to propel herself but she is million miles closer to catching up than she was before.

The Internet can be both reassuring and scary and I won't play down that your DN needs a referral, but at least you know there are good news stories too.