Very premmie babies - how quickly do they catch up?

[suejonezisdanielsmummy]

Daniel was born at 27 weeks and was less than a kilo. He's now nealry 14 months and is doing very well. I'm going to try to persuade my GP to refer him to a consultant as I doubt he had any of the normal checks.

But I'd like to know how I can expect his development to progress - I know that I need assess him according to his due date not actual birth date but presumably not forever! How quickly should he be catching up?

He is currently pulling himself up on furniture and sitting down again on his own, commando crawling quite fast but not with his belly off the floor, walking with me holding both hands and a bit wobbly hlding one hand only. No obvious medical problems.

I have no experience of premmies so I'd love to know if anyone has any words of advice for me prior to tackling the GP.

(In case you don't know I adopted him at 11 months - hence no check ups from consultant)

Thanks mmm - how/when did you first notice the cp and how does it manifest itself now. I think thats the main risk for Daniel (apart from learning difficulties which will obviously take some time to show) and I'm told we won;t know definitely until he's about 2 probably but if he deos have CP that it is likely to be mild also.

I need the GP to check his ears - he keeps scratching them and had an ear infection when I first met him - so possibly he might have glue ear too. Or it may just be his hair tickling his ear!

he always had gross motor skill delays, had difficulty holding his head up, rolling over, sitting etc & was a very floppy baby.
he has generalised low muscle tone so his wrist joints etc are still very floppy but his CP effects mainly his legs, so he has a tightness in his muscles particularly the calf, knees & ankles & joints are stiffer.
I don't think I would have picked up the CP as he is mildly effected although I new he wasn't progressing as he should, but put it down to prem delays.
It was his physio & development paed that made the dx based on examination & reflex tests etc.

It is worth asking for Paed physio referal if only to monitor his progress. If Daniel had been born in the UK he would be refered as routine.

It is definatly worth getting his ears checked & an early referal if needed, both Audiology & Speech therapy tend to ahve long waiting lists..
Hopefuly the hairdressers can fit him in sooner

Now he is older he is walking although tires easily & wears ankle splints (DAFO) to maintain a good foot position otherwise he walks very tip toe with bent knees & is very unstable. But since wearing the DAFO's his walking has improved hugely & he really can do everything his big brother does.

Daniel wasn't sitting up (even supported) at 11 months but he progressed so fast with one to one care that I think that was due to institutional delays rather than being premmie.

Have a doctors appointment on Friday.

have also been told he is missing some immunisations - is there any advice on premmies and vaccinations - do you go by their due date or actual DOB and are any not recommended - I ask becasue I know that their immune system is weaker but I'm not sure how long that lasts for. He does pick up colds easily but hasn't had anything else in the past 3 months.

Older daughters CP diagnosed at around 18ths. When crawling her right foot would be out at an angle because she couldn't put it out behind her and as I said previously she walked relatively late (22mths). Her right foot movement felt 'tight' and I used to give her physio (as per instructions)bending and stretching her foot. This problem was not something that was noticeable to many others though!
We were lucky in that she had good physio support until 7 and improved dramatically. All the things they said would be difficult she has managed to do and in some cases do well (swimming, cycling, playing an instrument) but PE is not her favourite subject!
Immunisations given after she came here were all given at actual age with no adjustment made.

Sue, I recommend you start a new thread seeking the advice of jimjams. She a fabulous for advice on vaccines.

Hi

I would also get in touch with your health visitor.Depending area where you live she should be able to refer you to community paed for assessment.

A HV can refer to a specialist? Really? I would have thought GP was required for that.

hi uwila

Certainly in my area we do.A big part of a health visitor's role is development.we refer dirctly to community paed for assessment.However if a child needs referred to hospital paed if there are medical concerns then a Gp would refer

Sue
The fact that Daniel has made such good progress since having the support is such a good sign.
Vaccinations are a personal parental choice but IME they don't adjust the babys age.
In fact DS2 had his jabs while still in special care, first lot at 2 months, so a month before his due date.
I'm not sure if this was the right choice but as his immune system was so week consultant advised us to vaccinate.
I did really debate the MMR with the GP though & ds2 ended up having it although much later than advised.

Just another thought about vacs - and not sure if you've started another thread Sue -not sure whether you are having to readopt here but have a feeling you might be. It is of course an option for most to not vaccinate at all or to make some choice about when and how (eg triple or sep vacs) but not for those of us who haven't yet adopted in UK or so I was told!

Hadn't htought about that beemail. Yes I have to readopt him.

Sue you may already know this but re-adopting is only necessary to get a UK birth cert. You can apply for UK citizenship now, and after that get Daniel a UK passport. If you want to know how get in touch privately with me.

Good luck!

Hi beemail,
I have a daughter adopted from Kaz who has not been re-adopted, and even before I had received her citizenship I discussed her vaccs with our local nurse and then decided which ones to give her. The issue of whether she had been re-adopted was never even mentioned and I'm surprised this is seen as an issue.

Don;t think vaccs will be an issue for me either - I think it is down to how involved your council get in post placement supervision. Just had my first visit which lasted about 15 minutes and consisted of her asking me if I wanted a buddy.

I asked her about vaccinations and she said she would ask for a buddy who had knowledge of vaccinations! Not exactly what I meant but get the impression that she wasn;t going to get involved.

M - the citizenship is different if you have gone through the UK system as we are registered in teh system that Daniel is in my private foster care until he is readopted. I have already been told that he will not be issued a UK passport until he has been readopted in the UK.

You adopted form one non-hague country into another where they recognise the adoption order. Because Uk is Hague and Kaz is non-hague Uk will no recognise the Kaz adoption. it wasn't relevant to you because she has a US passport, the adoption was irrelevant as the US recognised it.

Does that make sense? Anyway getting off the point a bit. HAve doctors appt first thing tomorrow so will talk to them about various things ans see how they think he is doing.

Yes Sue that does make sense in the odd circuitous UK way. Makes me glad once again that I went via the US. so you basically have to wait a year at least until re-adoption is complete just to get him a UK passport? Insane!
Wishing you lots of luck with the doctors.

Thanks will let you know if they say anything interesting...

and we must plan a visit to the beach in the summer

God Sue I hope we can see you both before then!!! Though it will probably take you another 3 months to recover from the drama of Kaz

Sounds like you have one of the "light touch" variety of sws. One of ours was very thorough and got quite involved in the health aspects. As you say we were technically foster carers and our daughter in the care of the LA. The other thing we were told was that we couldn't leave her with anyone who wasn't police checked.
We got through though - didn't need to leave her that often and knew plenty of people who were. The only other thing was that until we got her UK passport we had to get visa to take her out of the UK (even for day trip to France)
If this affects you worth looking at Schengen visa. Fortunately we didn't feel like leaving these shores for quite some time (unsurprisingly!!)
Digressing again!

Luckily don;t feel the urge to travel eitehr - have done my share for a while. I asked about leaving him with people and CRB checks and she had no idea! Think Richmond see it very much as a formality, don't get involved in Health visitor stuff or anything like other friends of mine did. I will get my mum CRB checked as realistically she's the only person I'd leave him with on their own for some time. (other than childminder who is of course CRB checked anyway)