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. I'm afraid I don't know anything about CP, I just wanted to say I really feel for you as ds1 was similar to your description above at around that age.

He doesn't have CP, I think his gross motor delays were due to low muscle tone and double jointedness and possibly dyspraxia, but also due to his ASD (which was diagnosed later) he didn't really have any internal motivation or curiosity to go anywhere or practice his motor skills, so would be happy sitting in the same spot until you moved him.

How is her communication, eye contact etc?

Sorry, this post wasn't supposed to worry you about other potential problems... Its really tough waiting paed for appointments to come through and then after that you have to wait again for the referrals. It has been my experience that paeds can't tell you much until they've seen your dc over a decent period of time and/or the dc have reached a certain age, but it might be different depending on the condition.

I would say if you are trying to get her moving and/or weight bearing, try to get one session with an independent physio. They can tell you quite a lot in one session and give you exercises to practice at home. it really helped ds1 who is now walking and squatting - never thought he would! He also has strabismus btw.

Sorry, no direct experience of CP myself, but I do have a very good friend who has it. She's a happy, confident 18 year old, the only difference between us (bar 2 and a bit years in age!) is that she uses a wheelchair when we're out and about :) I am sure, whatever the outcomes, your DD will be the same happy girl she is now, and it's great you've come on here for some advice/support.

Keep us updated and I'm sure when you have some definite answers there will be people on here who will be able to advise and support you :)

I dont much much about CP only from what I know from my sister SGK.
However. DD1 was very late sitting, bum shuffled, didnt weight bear till late, never crawled and didnt walk till she was 2 years old. She also had a very high heart rate during pregnancy (both of my girls did due to placental damage), she was born by ECS because her heart rate was 220bpm and wouldnt come down.
She does not have CP but does have HFA.

Is she delayed in other motor skills? sitting? hold head ect?
Have they checked her muscle tone?

HTH

Morning guys!

Didn't sleep at all last night thinking about this.

Obviously I have been wracking my brains to think of other little anomalies within DD but am confident that she is pretty normal with things like socialisation,vocalisation, etc. She copies speech, smiles, laughs, took it upon herself to build a 6 brick tower the other day! Her fine motor skills are slightly advanced if anything (I think) as she can twist lids on and off of bottles an things like that. She hasn't been able to use her doidy cup so am wondering if this is because it requires two hands. I haven't noticed any left/right bias but then I hadn't been looking for it tbh.

She kicks both legs very evenly in the bath water and can clap her hands perfectly.

The closest she gets to standing is to rise up in a cross legged position to her ankles.

Her birth was very traumatic and her heart stopped for about 2 mins (scalp monitored so accurate) as I recall, certainly over a minute.

I also have the huge guilt issue of having taken Mifepristone to end the pregnancy at 9 weeks and then changing my mind. She effectively lived through a termination. No idea if this could be a factor.

DD has cp she was diagonsied at 14 months old - she was unable to sit,crawl or walk she was born by a normal delivery but i did go in labour at 26 weeks which they managed to stop.

there are many types of different no two cases are really the same the main markers are the fact they don't meet there mile stones when they should this is what prompted us to see the doctor we were luckly we were seen the next week and diagonised within 2 min of being in the room with a fantastic consultant.(which unfortunatly has just retired)

DD is now 8 and is perfect in everyway to us.
she is now able to walk talk and do most things other children her age can do i'm not ssayin it hasn't been hard as it has very but this was the child that we were told would never ever walk , sit or talk.

So as easy as it is for me to say try not panic to much as cp comes in all shapes and fforms.

yYou stated also that it was a 6-8 month wait to be seen your gp can directly refer you to paeds at the hospital as this what was done with us..

If ther'es any other questions you have i'll tmy best to answer them.

DD also had an irregular heart beat at the end of pregnancy when I was monitored several times due to false start labour. She was posterior and 15 days overdue in the end. She had a query heart murmur as a newborn as she was prone to grey lower half when picked up/feeding but no murmur heard on later checks. She was at GP this week as she had a full body rash due to a virus, and again the heart murmur was there but could be due to fever so we have to go back.

Eye appointment is tomorrow so will probably mention concerns of how squint relates to the other stuff and my worry abouit CP.

Thanks fairydust. I am hoping that if DD is diagnosed with CP then the reality is that she has good communication, eating, digestion and upper body mobility so far so we don't have anything 'new' to deal with iyswim. I have no idea what the prognosis could be for walking eventually.

DD was about normal to gain neck strength/head control and was a late sitter, and even the bum shuffling came late. Social milestones were early.

I have no idea what all this means. I just want to know.

I will ask about access to paediatric care. We are in the system for a paed app. at our local children's centre but I don't think the link has been discussed between bradycardia in labour, the possible strabismus an the failure to weight bear or walk.

...maybe that would speed up the referral.

Riven, I was hoping you might see this. I know you have more signifiant hurdles to deal with but you are also a voice of experience on the subject - particularly because (if I understand correctly) your DD's oxygen at birth was the causal factor as it may well be for my DD.

What I don't understand is whether CP can be serious enough to significantly delay or prevent walking when other motor skills appear good? What I mean is, is it still possible that DD may have seriously impaired ability to walk despite her being able to everything else well? I realise that individuals can be affected on a left/right basis but what about top/bottom?

I know nothing about all this.

The other thing for investigation is that DD has very, very splayed hips. She had an ultrasound when she was tiny but it was clear. However, in light of her non-weight bearing, this is being checked again. I always thought it would be that but am now realising that the strabismus and the bradychardia are relevant and raise the possibility of CP.

yes - if you do get a dx, on the avail evidence, diplegia would be sensible as it sounds as though only her legs are affected. (whether 'spastic' or not depends on the muscle tone difficulties - spastic tends to refer to the muscle tone being too high/ tight)

dd2 was dx spastic quad originally (also from birth hypoxia) as her whole body was affected. she spent 5 weeks in scbu/ tube fed etc. despite the obvious (she received high rate dla from 6 mos and had physio/ slt from birth) we didn't get a formal dx until she was nearly two. that said, it was pretty obvious she had cp from months old. they just didn't tell us...

dd2 had frequent hip x-rays to monitor formation etc (as she was not weight bearing the 'cups' were quite shallow, so it is important to get weight bearing to promtoe this formation - pt gave us a standing frame very early - at 12 months, she got it on her birthday lol and she progressed to using a walking frame eventually until the end of yr r. she's fully mobile now, except she uses a wheelchair for distance or if we're on a tiring day out. she's 7 now.

dd2 also had strabismus surgery this summer - she's had a squint (alternating converging) from about 3mos old. when we took her for the first eye appointments, i asked if the squint was anything to do with her difficult birth/ delays (remember we weren't calling it cp then lol) and i wa told no. absolutely not. this is not linked.

they were, of course, completely wrong. over the last 7 years we have seen many different opth consultants (we move a lot) who have refused to do surgery, because the squint will be caused by poor muscle tone caused by her cp, and surgery would be pointless. very different from the first consultant, who said, nothing to do with it, we'll operate when she's 18mos, the sooner the better.

anyway, the surgery this summer was very successful the new consultant decided that the squint was caused by cp (no kidding) but that the treatment was the sdame for kids with or without cp, and so the surgery needed doing asap, as at 7 she was a late candidate for an attempt to get binocular vision in any case.

she's worn glasses to try and correct it since before she was 2 - she's still wearing them now, but the actual squint is miles better.

anyway - dd2 is 7, walks, talks (we were told she wouldn't do either) although she is a little stumbly and a little slurry, skis (it costs a bleeding fortune) and has an iq of 142 (apparently... we had to prove she had no learning disabilities and the ed psych came up with a whole load of new problems revolving about bright kids that can't use a pencil lol). i only tell you that because, really, she's a normal kid who just happens to have a brain injury that makes life a bit more tricky.

no idea if any of this resonates with you - been on auto-blah

oh, and don't even start me on the ethical considerations of cosmetic surgery on children with a disability. 'normal' kids will be operated on asap - after all, we don't want them bullied at school, do we? but kids with a disability are going to get bullied anyway, so we don't need to operate.

surgery on children with issues is another issue - some children with a brain injury don't react well to anaesthesia etc - but this is a completely different subject.

no-one would operate in the uk riv. it was only when we moved to canada that the new eye guy took one look at her and said 'why has no-one done this?!' and got her booked in the first available slot. everyone on the uk just shrugged and basically said 'what's the point?' y'know if she drools and wobbles, she's gonna get bullied anyway...

it was only the guy out here who said 'but what about her vision?' if we do it now there's still a chance she might develop better vision. from the five diff people we saw in the uk they were looking at it totally from a cosmetic pov. i got a second opinion over here from a british specialist and decided to go ahead with the surgery - so glad we did. she was as miserable as sin for a few days, but her eyes are much better a- to look at, and b - her vision has changed already, her prescription has altered, and she even loses her glasses because she tosses them away somewhere, it doesn't bother her going without them at all.

will they not operate on your dd because of the general though? the anaesthetist here was pretty good - and dd2 had had ga before for mris etc and had been fine. it might be the szs - it's (touch wood) the one thing we haven't had to deal with since she was a few mos old and we got them under control... and the neuro thinks that her pattern of damage isn't likely to lead to szs later - although of course we aren't getting that in writing.

the surgeon wanted to operate on my ds for his squint;but he said it would be purely cosmetic and would not help his vision in any way(ds now 7)-He said it could be done at any age if we changed our mind

Hi Hobgoblin
It sounds like a very long waiting list, is it for a Consultant paediatrician or a paed physio? Both could be helpful to you so I would ask for a referal to whoever you've NOT been refered to, you never know they may have a shorter list!
DS2 has very mild CP, spastic diplegia so mainly effectign his legs, his upper body is the opposite, so floppy & low muscle tone.
ds2 was born at 28 wks and has autism aswell, tbh he is fortunate that his CP is mild & his ASD is far more disabling for him.

DS2 was abouyt 2 when we were formally told that he ahs CP although he ahd physio from birth so we new long before, all his physical milestones were very late, in fact weight baring was something he could do (with support) even before he could sit or roll over.

Anyway he is 8 now & runs & climbs albeit wobbbly & tires easily.

Even if it is CP, as the others have said it comes in all shapes & sizes & all the things that she can do already are a very good sign.
The most improtant thing is early support & intervention. SHout & shout louder to get an earlier appnt, let them know you are able to take a canncellation or maybe travel to another hospital?

From all of the children I see and know with cerebral palsy even the ones with mainly legs affected have some degree of delay with fine motor skills. I would be really surprised if someone with such well developed fine motor skills had cerebral palsy. But of course CP is different for every child. this is quite interesting. My dd has spastic diplegia and although it is her legs affected, her fine motor skills also lag behind significantly. Have they looked into possible hip problems at all?

Hanging, Snap, i wanted to say that but couldn't find the right words.
ds2 has Spastic dip too but his upper body is floppy & has crap fine motor. Everything is involved to some degree just legs more so.

Hi again

The good fine motor skills do sound hopeful. I guess we're just at a loss to think of an explanation for the very delayed mobility. I was being quite blase about not walking because she is 8 weeks off 18 month milestone, but then she still has not been able to stand. She is extremely delayed on this front, clearly.

I am utterly frustrated that the wait for answers is so long. I'm also concerned that her ultrasound at about 6 months was clear regarding the hips. And more recent manual checks of her hips show no dislocation, etc.

I guess there is a list as long as my arm as to what else could be delaying her ability to weight bear but the strabismus (not formally diagnosed yet but observed) starts to point in the direction of CP. Maybe it doesn't.

To think that all this time could be passing when she could be receiving therapeutic in tervention just seems so appalling.

I don't know what to think, say or do. I don't want to be a hysterical paranoid parent but there has to be SOME explanation. Non-weight bearing at 16 months is so far from normal, how can it be 'just one of those things'?

Hi hobgoblin, our dd is nearly 4 and suffers mild ataxic cp. Was very quick to talk and a sociable little girl but is physically behind. Never sat unaided till 16 months, first crawled about 20 months and was over 2 when she first weight beared. Now at 4 she can walk in her own way and is starting to try run, although we still rely on luxuriant if going out as can't walk far at all.

Fine motor skills been a bit behind peers and still has no real hand dominance but this only means she gets doubly messy at nursery.

Good luck at peads

I would also think fine motor is likely to be affected in some way if she was typical CP??

DD (3) had a stroke/brain injury before birth but has never officially been dx with CP. Her main difficulty is her trunk which is low tone so has delayed her physical development. Top and bottom half have always functioned ok - it's just the middle section with my DD!!

I do know of other bum shufflers who haven't weight beared until late (myself included).

Hobgoblin, you are NOT a hysterical paranoid parent, you are a parent who knows their child. Follow your instinct.
We have all tried to offer reassurance, but we are not experts, we only ahve our own experiences to go on.

I can understand your frustration, if you can manage a private consutlation maybe just to get things started it may be a good investment.
Take care.

Gawd no, you have every right to want answers. I hope you do get referred on and get some reassurance and answers soon.