It is just dawning on me that we might be facing investigations for cerebral palsy

[hobbgoblin]

I am slightly jumping the gun here but have been doing a little bit of DIY research since the paediatric referral could be 6-8months for an appointment.

DD is 16 months old in 3 days. She does not weight bear voluntarily at all and can only do so with support for a few seconds. She is also being investigated for strabismus on Monday.

On the reassurring side, DD has very good fine motor skills and seems to have good cognitive skill. She is happy and content. She is a bum shuffler which I know can delay walking, but the concern is the lack of weight bearing. When I first mentioned this issue to the GP a couple of months ago she too was concerned about non weight bearing rather than walking.

DD experienced Bradychardia during labour but recovered had an apgar of 9.

Can any of you with experience help me make sense of things. I am increasingly concerned, and very frustrated that it will take so long to be seen. We would consider paying (rather, DP would/could) for an assessment if it seemed wise or it improved any prognosis longer term if there was indeed a problem.

Am I imagining that strabismus and inability to weight bear at such a late stage are markers for CP.

Hi Hobgoblin
My DS is 2 (just) and still cannot walk. He was unable to weight-bear at all until 21 months, but now likes to pull up if you hold out your index fingers to him. He can walk holding onto fingers but is still very wobbly (also a bum-shuffler, by the way! ). We have seen a paediatrician and a paediatric physio and I was also convinced that they were going to say mild CP (especially as he's so wobbly when he stands). However, both have said he's just a very late developer. He has low muscle tone in his lower body and weak ankles (loose ligaments in feet and legs don't help), but again, no particular reason. The physio says he will walk eventually and the more standing he does, he will build his muscle strength. His fine motor skills are good.

Hopefully you won't have to wait 6-8 months to see a paediatrician. I think we waited 3 (but still seems ages when you are anxious, I know). Good luck

hobbgoblin, i hope you get answers soon.

dd4 was referred to stanmore orthapaedics at a year old due to none weight bearing, bum shuffling, and uncertainty about her hips/knees. she 'crawled' oddly, with one leg permantly tucked under her. she didnt roll over till 11months. CP crossed my mind at the time, as dneice and dnephew both have it (genetic predisposition to brain bleeds leading to CP IIRC), as well as a coiusin as well.

dd4, has hypermobility in her ankles, knees, hips, shoulders, wrists and hands. posssibly elbows as well.

she pulled to standing around 16months, and finally took her first steps at 18months.

she walks oddly, with a hip swing, particually her left side, but her x-rays etc have all been fine. she is prone to disclocations, so we handle her with care, but is an otherwise normal 2yr old (bar her list of allergies of course)

Thank you for the latest messages of support and advice.

DD has now had her eye appointment and she does indeed have a fairly slight divergent squint in both eyes.

Now, I've been advised to get her checked again in May and meantime, no treatment. That's fine by me if that is the course of treatment. Any surgery later on if it does not self correct would be done after the age of 2 when they can be precise.

Does this compare well with the advice in your PCT? Just curious and experience tells me to seek outside opinion!

you should be able to get her sen sooner by community physioptherapist for the lack fo weight bearing.
not for the wlaking as such because she isnt "delayed" yet for walking but clearly she should be able to weight bear.

my dd could weight bear from 12 months but still didnt walk til 25 months; my son didnt weight bear til 17 monhts, he also walked at 25 months - well first steps - he can now walk for miles.

both have hypermobility, hypotonia.

is your DD very flexible in her joints, all over or jsut in legs?

trauamtic birth does lend towards looking for CP - but tehr are also neruomuscular conditions which can afect trunk/legs more thn uppper body - you do need to consider trunk tone/strength as well, as this is important for walking.

you may be able to self refer to community physiotherapist for an asessemnt -ask GP to make that referral, because ultimately that is what she needs right now -some regualr physio exercises you can do with her while playing at home. dont wait for this push for a p[hysiotherpaist to see her - because whatever the underlying diagnosis, she needs some physio input.

so if you going to spend money yourself, get a private physio asssessement - look up childrens physio in your area (if you in london there are loads of good places, but there are others outside too).

the paed and diagnosis will come at some point anyway, but regardless of diagnosis you need to be getting her some basic physio right now, espec to look at her whole posture etc when stiiing as there is risk she gettting bad habits. it should be enough for GP to put "not weight bearing" as the "diagnosis" for now i n order tpo get the community phsyio referral for assessment -and this will also help the paed/neurologist in seeing where to go with diagnosis.

a physio can assess her physically and tell you where physically the issues are (tone, strength, tight ness or looseness, trunk, legs, etc) and more importantly can give you some exercises to do with her.

spend private money on seeing a paediatric physio for an assesment and advice, if you going to spend any - the diagnostics, tests etc - that can wait.

as riven said: having hand function and speech are the two most vital things .

squint - depends how abd it is but both my dd and ds had squints and both were givn glasses for long sight from v small one year old.
both had patching at some point, ds more than dd.

did you see the specialist paediatric opthamologist and optometrist?

both ds and dd were checked every three months by optometrist at that age, and every six months by opthamologist - at least once a eyar they put drops in eyes.
(now down to local optician for DD once per eyar and six months optometrist/annauuly opthamologist for ds) - but when both were little every three months with optometrist at hospital eye clinic

and at this age they should be checking every three months not six, if she does have a squint.

ds2 has spastic diplegia cp

he was not diagnosed until 16m, even though i knew something was wrong from 7,, and kept pushing. In fact i have a huge suspicion he was only finally diagnosed because the local health authority knew we were moving out of their area so wouldnt have to fund any treatments for him.

At 16m he was unable to sit unassisted or roll over or crawl or weight bear

He is 10 in february and attends a ms school but he will never walk and cannot stand unassisted, so he is a permanent wheelchair user. He can crawl but of course this is not something he wants to be doing around his peers as he gets older

He is mainly affected from the waist down, but also has some fine motor skill issues, and uses a laptop at school as writing puts his hands into spasms and that then throws the rest of his body out of line, causing him pain in his legs, and tightenings

His communication and verbal skills are v good, he is a popular member of his school, and a smart little cookie whi can charm birds out of trees, but he does need a lot of help wrt his mobility, transferring to car, toilet, getting dressed, bathing etc

i forgot to say he also has a squint, which was operated on and is now much less obvious after it was operated on, and also has browns syndrome, which affects his ability to look up and to the side in one eye

he has worn glasses since he was a year old, though over the last couple of years he has started to need them less often

sorry, once again i forgot to say that ds2 was assessed by his physio on the severity of his own cp issues, i forget what the name of the test was called, but it is specifically for cp

he was classed 4/5 which is moderate/severe, but that could look misleading to some who werent up to speed with cp, because he just looks like a little boy sitting in a wheelchair, to all intents and purposes iyswim

but his physical limitations are less obvious whilst just sitting, until he has to actually do something iyswim

gross motor function classification system (gmfcs)?

just wanted to add - diverging squint would (probably) not be treated by glasses for long sight - this is usually the treatment for converging squints, as the eyes are working harder to reduce focal length, so they give a prescription to reduce the amount of work the eyes need to do.

not sure what the treatment for diverging squints is initially, though would say agree totally that 6 mos between appointments is ridiculous. dd2 is 7yo now and only last year changed from 3 monthly appointments with optometrist and 6 monthly with opthalmology, 12 monthly with consultant. eye management tends to be quite hands-on when they are tiny!.

Can I just chip in, to all those who have children with squints. PLEASE press to get them sorted, I had mine done at FOURTEEN, so too late to help my vision much (but you all know mine's a bit rubbish anyway!) BUT it has helped my co-ordination and things, so it's worth pressing for! :) Shocked that they're not operating, that's terrible!

Madwoman it could be but my mind has gone totally blank!. I blame the fact Ds1 has been ill for over 2 weeks, that i am tired, and middle age making my brain forget things :)

DS has got a serious divergent squint. I have always been told there would be no point having it corrected, even though he has had other eye surgery for his droopy eyelids. All this is food for thought.

Lollipop-interesting to hear your side-I have been told by the surgeon and others at the eye dept that the only way surgery would have helped ds's vision would be if he'd had it at 3 months or younger.They have repeatedly said it would be purely cosmetic.They have said as his squint is so severe,it may take 2 or 3 tries and still it may not totally work-as he has sld and was head banging 'til fairly recently we decided it was too high risk-they say he looks with one eye at a time and will be totally used to this...he can't tell us-

intothewest, I used to look through one eye at a time, and still do as with me they couldn't fully correct the squint or I'd have permanent double vision. I still get it at times when I'm tired or stressed, but I was getting bullied for my squint so it did wonders for my confidence. I think the younger you get it done the better it is for vision really, although it seems mine came on after I was given glasses, ironically.

I think it's just something I can't face doing at the moment-really interesting to hear it from your experience,Lollipop

Fgs I am concerned now. Why is there no damned consistency in care?

The opthalmologist said that any surgery would be for cosmetic reasons only and so not sure what exactly they are going to do (apart from wait) about the actual sight aspect. Everything I've read says they don't get better on their own. DS1 has a squint that went undiagnosed until age 7 and then had patching, but his was the other (brain message confusion not muscular) kind.

i was told originally if it was done in the first couple of years then the vision stood a good chance of developing normally - ie you see with both eyes. then i was told (for five years) that she would never see with both eyes, she would use them both independently, but because her brain wwas used to that it wasn't a problem, and that surgery would be cosmetic but pointless because of ther disability. the new eye doc here said omg let's operate asap. the second opinion guy said that she was borderline for it having a major impact on her vision becaudse it had been left so late, but that cosmetically it could be done at any time. he said we probably had until she was 8 to make any difference to her vision.

the problem with this science stuff is it's just not very scientific, eh?

we've had it woith other things too though - the first orthopod wouldn't botox because we were moving in a year, and if it worked, the next orthopod might not continue the treatment, so better for her never to have had it. (eh?)

at least he had the balls to explain that really every specialist has their own way of treating something, and if it doesn't work, then they try something else - there's no right and wrong treatment for most cp issues, trial and error is the way ahead.

I had two late walkers. Dd was 20 mths and ds 22 mths. I don't think either of them were weight bearing at 16 mths. They are both now fine. Sometimes kids just develop late. I didn't panic too much as I knew dh and his brother had been very late also. Do you know how early you or her father walked? So there may be no need to worry. My kids are great walkers now - no problems at all.

Hi. Your DD does not sound typical spastic diplegic CP, or CP at all really but if you say her legs splay out I take this as sort of budda sitting? This would point much more to hypermobility of her hips where the muscles and tendons holding the hip joint are loose. To weight bear when the joint is loose/lax would be uncomfortable and difficult. Spasticity would make the legs tighter the ankles tight and toes point down (like a ballerina) and you probably would have difficulty sitting her on your hip?

I would look to getting a private referral if shouting doesnt get an earlier referral! As others have said it is important to weight bear because weight through the legs and onto the hip joint/socket makes them form in a normal way, this is why lots of CP children have standing frames which support them but allow for this weight bearing.

Squints are common in CP. But not uncommon in the general population! Maybe a good private physio would give you an initial assessment?

Hi again

Update is that I have booked a private paediatric physiotherapy appointment thanks to advice here. DD will see physio at home tomorrow so we will have a clearer picture of her abilities physically.

I have been closely observing DD and notice that she claws her feet or torns them inwards or outwards if I try and stand her up.

When I put her to sit she will extend her legs sometimes to try and stand (you know how they do when theydon't want to sit in a puschair!) and she leans back into me and just pivots around on her ankles sort of.

When she is standing between my knees she sinks down so her elbows come up and bears weight through her shoulders it seems. Her feet often remain planted on the ground but she just swings around and crumples through her hips to her knees is the best way I can describe it or else she leans forward with her bum out so no weight goes downwards towards her feet.

I'd say she has floppiness rather than stiffness. I've also thought about it and I'd say her head control is a little lacking. So, if you pull her up by her arms her head still struggles to keep up - barely noticeable now but it's only recently been that you could pull her up this way without feeling like you are going to pull her arms out the sockets. Also, she has never rolled right over onto her tummy. She can get on her side but not right over. She cannot go from lying to sitting either. She tries but fails. Not sure what the milestone mark is for that????

Thanks for your support everyone.

Today I had the letter for her paediatric consultant appointment and it is due 9th Dec. Hurrah!

Glad you've got your appointments sorted-you do need to get some answers-good luck

Well done you for getting the ball rolling, the sooner you know what the verdict is the better you can help DD. She certainly sounds low tone (head lag/crumpling to her knees). The feet doing the weird scrunching up toes when weight is put through them is a neurological thing, they should plant them down sort of flat footed.

Low tone(hypotonia) is not considered CP as such (although there are so many presentations!) and the good news is that weak muscles are easier to work with and strengthen than to loosen tight muscles! The squint again can be a weak muscle in the eye.

She sounds a complicated picture but also very promising in what she has already accomplished and I would be very optomistic for the future. More work unfortunately but worth it.

Well, VERY reassurring assessment from the physiotherapist this morning. DD is fast asleep from all the exertion!

Physio noticed immediately that DD was very flexible and has informally diagnosed hypermobility in pretty much all her joints.

She can bend knees backwards, feet onto her shins, etc. etc. etc. We apparently need to get shoulders and hips thoroughly checked again as there was some clicking.

We've got some exercises to do to help DD and swimming highly recommended.

Of course, we have the official paediatric appointment to come where we can check the bigger picture. It is slightly concerning that DD has raised a query over heart murmur, has greyness in lower half, and of course has the strabismus. These, along with hypermobilty are features of marfan syndrome. Basically we need to make sure that the reason for hypermobility isn't anything sinister.

Thank you all so much for your words of wisdom, I will keep you updated. :)

bless - have a cup of tea whilst she sleeps.

sometimes you never get an answer, you know. it's so frustrating.

Hopefully nothing serious turns up. You should get physio and OT eventually and if lucky with your area a hydrotherapy pool. They are brilliant like a giant bath!