dd may have cerebral palsy and I am struggling [sad]

[ladylush]

Not sure if I am posting this in the right section. dd was born 10 weeks early. She passed all her screening tests and did well in scbu. Her locomotor skills were delayed but we expected that because of her prematurity. At 14 months she was seen by a pead (I requested referral) because she wasn't supporting well when sitting. The paed said she was fine - slightly delayed but not when taking into account the prematurity. She was seen again at 18 months (couple of weeks ago)as standing on tip toes and not walking. Paed said her achilles tendon was tight and referred her to physio. Otherwise no concerns. We didn't want to wait so took her to a private physio. Physio immediately seemed concerned when she examined dd and eventually (after much probing from me) admitted that she thinks dd has diplegia (legs). Unfortunately this news came at the end of the session and there was only time to ask what end of the spectrum she thinks dd is and what her prognosis is in terms of walking etc. Today I can't seem to stop crying. It is just so hard to accept - particularly as dd seemed to cope so well with her early arrival and all that it entailed. I know we don't have a diagnosis yet but I'd really like to hear from anyone whose dc has CP (particularly diplegia of the legs) who may have some advice about what we do now and what we can expect. TIA

Our consultant said that there is no real need of portage is the children have other play/social intervention with mild moderate cp, espeically with the very young babies and in DS case she reckons nursery will do the same. We worried about putting DS into nursery but it seems to have been a really good decision as its a really good nursery (and they are so much more patient than me) The consultant can't believe they got the funding for the 1 to 1 either. I'm sure it helps to have been in the system already (DS is not 1 but already has 3 consultants and the nursery sent all the medical reports to the SEN team)

I would really keep trying though, as it seems the NHS is playing a blinder for us and not so much for you. Also I am sure that it helps that DH is really persistent and they have both of us to deal with.

As for sporty, I am sure your DD will find something she loves and can join in with you and your DH. I have now heard of many CP children who are very active (so far I have people playing netball, swimming, riding, and judo within the range of friends of friends, and your DD will i am sure find what she likes). My DH used to run away from balls so cycling and swimming is really all we ever thought about.

As for the cold, I can still feed DS to sleep again even through a cold so I still do most of the nights!

I'm pretty assertive and my letter writing seems to be working I think sometimes it's just the luck of the draw in terms of what area you're in.

dd2 had portage - not sure where the 'only lds' comes into it - it's far too early to know if ld's are present if portage is introduced in a timely manner! portage was useful for dd2 because her cp affected her whole body, so the range of sn adapted toys that portage accessed on our behalf were very useful. i suspect it's a money saving measure!

on that note, as a parent of an sn child, you can usually borrow sn toys from your nearest toy library free of charge. as a tiny it wasn't so bad to find something suitable, but as she got a little more able the toy library and portage were really useful to 'test out' whether an item would help/ be worth purchasing. we borrowed some amazing stuff that is only available through sn outlets.

dd2 had an adapted bike from about 3 with a full pelvic and chest support/ foot plates etc. around 5she switched to just pelvic support, now she's got the coolest low rider with no adaptations (like a go-kart lol) that she can get on and off without assistance. i have no idea whether she'll ever have the balance to ride anything other than a three wheeler, but she loves it. at the moment the c of g of a regular bike is too high. but everyone thinks her bike is way cool and wants one anyway they are blardy expensive though...

Hi,

My son has CP - hemiplegia. he's four and a half now and he's gorgeous. He's walking but we didn't know if he would. We found out at Great Ormond Street that he had CP when he was four days old. I can still recall the pain incredibly easily of those early days.

We pushed for physio from an early age and we pushed for a walker as soon as he became ready for one. We took our son horseriding and this really helped make him think about balance, I cannot stress strongly enough how much I think this helped.

I hope that you feel stronger soon and that you enjoy your child, that might sound a bit strange but sometimes I wish I had thought less about what the future held and spent more time thinking about enjoying being with him.

Take care x

Hi Charlie
Thanks for your message. No it doesn't sound silly at all. Actually, I really do enjoy dd - far more than I did ds at this age. She is a very happy, gregarious little thing - and sleeps well most of the time. The latter is a big reason why I enjoy her quite as much as I do (ds was a terrrrrrible sleeper and I felt like a zombie much of the time). He sleeps very well now thankfully
I like the idea of hippotherapy very much and dd is on the waiting list - though it seems she won't start til she is about 4 years old. I'm glad your dd is doing well
Madwoman - thanks for the tip about the toy library. I've seen one in the area actually. I think I will check out the portage to see if the cons. is right.

Can anyone recommend a good toddler chair with arms/sides? I was thinking about the silvercross doodle play chair but not sure if it's right for dd.

I've come back to have a moan about services. The cons paed who saw dd said dd would be eligible for funded daycare from the age of 2. This also meant that we'd get some input from the inclusion team who provide support when a child with SN is in a setting. However when I asked about this I discovered that dd is not eligible because we do not claim benefits. So dd will have no educational support at all and will start pre-school at the same time as her NT peers. All she is getting at the moment is private PT. The NHS PT will see her soon but it's very unlikely she'll get much from them. The OT referral has been made but waiting list is months and months. I feel hacked off and very down about it.

Oh I am so sorry to hear that. No suggestions I am afraid but it seems so unfair when I get 10 hours 1 to 1 funded from the SEN budget in my private nursery, and nhs physio about fortnightly, i hope for your sake that's just because your dd is not thought to need intervention, but I don't believe that's likely yo be true.

hopefully someone else has some better suggestions. How's you dd doing. Ds has almost stopped wobbling now he sits so we feel a bit like we are progressing

Thanks hilda - nice to get a sympathetic ear
ds is doing well isn't he I'd say dd has progressed a lot in terms of her flexibility and she is really motivated in terms of what she wants to do but her body lets her down a lot and now that she is getting very daring we are having a lot of falls. Not serious ones and not enough to stop her trying but it's quite hard to relax! She can walk with a push along trolley but feet drag and turn in - one more than the other. She still walks on tip toes. We have been given gaiters to help her get used to standing flat but she hates them and sobs her heart out when we put them on I know it's early days but I'm feeling a bit overwhelmed at the moment And cheated. I wonder if there are national guidelines for care for motor disorders.

If you need bit of a break look around a few nurseries if you can afford it. If you can pay the cost of the session the LA inclusion co-ordinator can pay an inclusion bursary to the nursery to provide for extra equipment, resources, 1:1 member of staff etc.

I'm not sure if all private nurseries can apply for the inclusion bursary but I know the ones that have the free places from age 3 can.

BTW as far as I know you don't need to be on any benefits for your child to access the inclusion bursary.

Thanks nappyaddict. Unfortunately we can't afford to pay for any nursery sessions. We are paying £70 quid a week for physio and as yet have not applied for for DLA - just sent form off. I work part-time and money is tight.
However, had some good news....spoke to the manager of a special needs setting in the area and she told me that I was given incorrect info by the family information people and that dd is indeed entitled to some funded care. Initially this will be 2x 2 hr sessions but they will build it up. Tbh even a 2 hr session seems great to me. I don't need a break - I just want dd to get this input.

Do you receive any benefits? If you do then 2 year olds from "deprived" families are entitled to funded care whether they have any SN or not :)

Also apply to family fund. They may be able to fund some extra sessions if you want.

if you need supportive seating this should be assessed and provided by ot (or pt in some areas). dd2 had seating from about 4 mos old, right through. she still has a breezi for the dining table. they can provide seating for educational establishments too - we had a heathfield chair for nursery, for example. (actually, because we move so often and there can be issues with moving eqt from area to area, in the end we self-funded a heathfield out of the dla. because dd2 spasmed backwards, we got skids etc, as well as sides/ lap belt and padding. once she started proper school she just needed a normal classroom chair, but with pelvic guides, to give her some pelvic stability. she had a lap belt too, but i don't think they ever used it...