Support/Information sharing thread for parents of children with CP - part 3

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So here we are - thread number 3 to provide information and a source of support for parents whose children have been diagnosed (or not yet dx) with Cerebral Palsy.

Welcome to parents finding us for the first time and welcome back to any who have posted before

sneeze your post has really helped. 'Choreo' athetoid was something they n mentioned in the meeting for dd too.
Thinking about it all rationally, I know the type of CP label she will be given doesnt really mean a thing as it still will be about how she is presenting. But I honestly feel every time we go to an appointment we are thrown something else! Like today at opthamology, the opthermolgist asked if dd had absence siezures, because he notice that once or twice during the examination she went into a daze for a few seconds. i honestly havent noticed but now i am worried about yet another thing, it is again, the not knowing how dd's future will be.

DD like your DGS isn't overly tight, for her its mainly her ankles if anywhere, but now as she try's to walk (with lots and lots of support) , I notice she is very very wobbly in her tummy area which then cause her kegs o cross. Incidentally since the review,they are now talking of a Lycra support because as well as extra core support they feel she needs sensory input around her middle too?!? Has DGS used a Lycra suit?

She too seems very bright yet does struggle with fine motor skills. I now want this MRI to see where the damage is and hopefully give us a final answer.

Hi Albaba,
My dd1 has mild valgus deformity in both feet as well. She wore splints full time for about half a year, then part time, mostly at pre school. During the summer at age 3 and 4 she had a break from them so we could work on her hyper sensibility issues wrt her feet and to give the muscles in her feet and ankles a chance to get stronger. After that second summer, when she started Reception,we never put the splints back on. This was in agreement with our physio. The consultant we are under at the Evelina Children's Hospital was delighted at our recent annual check-up and said that her feet have loosened up since last time he saw her, the calve muscles and some other muscle around the knee has grown stronger amd he noticed her feet don't roll inwards as much as they used to! I was chuffed, to say the least
So there is definitely a chance that your dd's feet will improve. My dd benefitted hugely from not wearing her splints any more (although they absolutely served a purpose when she was younger), she also does ballet and walks to and from school most days which takes about half an hour one way.

Oh bedsheets I missed your post. That is also a good suggestion!

Albaba another thing I wanted to say to you: I know what you mean about cringing at the sight of their feet as it looks so painful. It was some kind of revelation for me when our consultant said to us last year: for her, it is not like having feet like ours which are bent so uncomfortably. Her feet are different, structurally, and if she was in pain we would see pressure points, red skin etc ( which we didn't). We as her parents will have to get over what it looks like. We'll have to accept that this is what her feet do and not get hung up on how they don't look asthetically pleasing. What's important is that she has good function and is not in pain. Which is both the case with her.
That really helped me come to terms with how her feet look. Although I'm still immensely pleased that they have improved somewhat

Hey all, dd bloods came back normal. Feel so thankful it's not muscle disease. 3 weeks of daily physio and she is now walking flat footed (supported) she only needs to hold one hand now so that in itself is a huge improvement. Theirs time when she's only holding 1 finger and I'm barely supporting her but if I try to wriggle it away she throws herself to the floor. This has all knocked her confidence so much I'm not sure how to build it back up again.

Summer. We did look at a lycra suit for DGS and it is ideal for children like him but they can be a nightmare to get on and off and DGS gets very very hot on exertion and can have little beads of sweat running from his head after doing OT! But DMO or similar suits can have a carry over effect which means they don't need the garment on all the time and can eventually go without them because they have built up the trunk muscles by using them correctly and also muscle memory so that they continue with better movements like less scissoring. He does have a SPIO vest from America which he wears in the winter and is much more lightweight. His posture improves immediately and it's much thinner.

DGS did have absences from 6 months to 10 months but very noticeable although only a second or two. He was severely anaemic and probably vit d deficient too at the time but all fine now. Probably not siezures but all sensory related, like loud noises. Thank god they stopped though as it was too much on top of the other stuff!

The wobbly walking is possibly the fluctuating tone. So not stiff or floppy but fluctuating very rapidly between the two causing a constant feeling of being 'lost in space'. Trying to balance constantly. The lycra suits provide a type of grounding as do ankle and wrist weights in some children.

Often the arms are more affected and fine motor skills really hard as everything is not stable. Imagine trying to pour a cup of tea on a fast moving train. That's what it's like with this type of CP. If the trunk is stronger and the child in a very supported fixed position trunk wise the hand movement will be better.

It's a whole new ball game

On the foot front, DGS also pronates like crazy but we have given up on the AFOs because he can't move at all in them, so we go with the piedros and heel cups to support his non existent arches . There a lot of debate about whether AFOs are right for all children but it's something you have to at least try.

And thank goodness on the muscle testing. I think CP is far preferable to a genetic muscle wasting problem

I didn't want to say incase it sounded un sensitive but yep CP we can totally handle that x

JOKAT. Thank you so much for replying. Your post was really reassuring that there is hope. I was just worried that my dd would be in afos or piedro boots forever so to know that there is hope is good. Can I just ask does your dd wear "normal" shoes now?

It's funny that you should mention ballet. There was a poster went up in our town for ballet lessons starting in September. I looked on their website and they take children from three which I would love to take them too but then I thought how could my dd possibly cope in those soft ballet slippers? My DH then suggested that if she is not going to able to do sports then maybe get in her into music and he suggested piano lessons for her. I think I will call the ballet school and see if she would be suitable. They can only say no!

I do feel that her afos help my dd with her balance but they do slow her down. I feel that she moves better when wearing her piedro boots but we have waiting so long to get them that we are persisting with wearing them. I can only dream of the day when hopefully she doesn't have to wear them anymore.

BEDSHEETS. I am really pleased to hear that your dd's blood tests can back normal. I sure you must be really relieved. CP is not a breeze by any means but there are different forms from very mild to more severe cases but it can be worked on with physio and exercises. I know in our case progress is slower than we would like but we are getting there.

Hi Albaba, yes she wears normal shoes. Our consultant assured us that whether she wears insoles, or more supportive shoes, the feet will just roll over the insoles and still roll in any shoe you put her in, so the only important thing is for the shoe to be comfortable.
For the winter I bought her some kickers as they were the only black shoes I could find that were not open on the top of the foot, but while they kept her feet warmer than standard school shoes, she fell over more as she tripped over her own feet, because the shoes are bulkier than normal shoes.
Wrt the ballet, go for it if the teachers seem supportive! When my dd first started, upon the suggestion of our physio we let her do it barefoot so that she doesn't slide around inside the shoes and socks. When it got colder, we put her in ballet shoes and she coped fine. Please don't worry too much about her looking wobbly, she can only build up the muscle strength (around the feet and ankles, I mean) if she gets to use those muscles! There a number of things my dd does at a slower pace than the other girls, and she can't hop on one leg yet. But she just does what she CAN do and at her own pace where she is slower, and it is absolutely fine. She did great in her first exams as they made allowances for her disability. She is popular (even though on top of the cp she also has selective mutism so doesn't speak to the teachers or the girls) and often someone will come up to her to hold her hand
I have heard of a girl with cp who couldn't even stand unaided when she started ballet, so she did all the moves (or approximations thereof) while holding on to a chair!

Does anyone have any experiences of educational psychologists? We saw my dd's Paediatrician yesterday. She says that we are doing everything that we can do for our dd at present - weekly physio sessions, home physio, piedros, afos etc. She is not overly tight and wouldn't be suitable for the like of botox. She said that we were great for putting so much work and effort in with her. When we started out I imagined by this stage my dd would be confidently walking but maybe just a bit clumsy and unsteady but she is not. We have put so much work in with her. I just thought by this stage we would be further on than we are. We have also been referred to a Neurodisability Consultant. I asked the Paediatrician if she could do or recommend anything that hasn't already been done and she admitted probably not.

She said that she wanted to refer her to an educational psychologist. She is due to start preschool next September. The Paediatrician thinks that she will need extra support not mentally as she is very smart but physically she thinks she will probably need support. Are you talking the like of a 1 to 1 classroom assistant?

I just feel really sad for her that this is going to be long term and that she is going to need extra support. I thought that if we put the work in now we could iron her issues out and she could start preschool being relatively "normal" I just don't like the idea of her standing out as being different. I keep saying to my DH that this is so unfair and that it shouldn't have happened. He keeps saying that I just have to accept that this is the reality and that I just have to deal with it and that I am going to drive myself mad if I keep thinking like that. I know he is right but sometimes endless appointments and no light at the end of the tunnel tend to get you down.

Albaba I can't help with your question we are in very early days of this process but I understand the driving yourself mad about the future. I think it's going to haunt me aswel x

Albab I don't know how youe dd's disability came about (I apologise if you explained it previously and I missed it). My dd has spastic diplegia because I suffered from spontaneous placental abruption (which also caused her to be 11 weeks premature). Once I started to accept the diagnosis and had gone through all the heart ache that came with it, I eventually reached a state of mind where I am just immensly grateful and feel truly blessed that she is alive (as we could have very easily lost her altogether) and that she is as able as she is. I have found this outlook very positive and it has given me a sense of peace. Maybe you will be able to look at things in a similar way one day. X

We have just recently been seen by an ed psyc. And all in all I found it really positive. She came to our home and did a full evaluation on dd observed her playing and asked lots of questions about not only her motor abilities but her social, communication and speech. DD will be starting preschool September 2015 too so the ed psych will put in place any support dd may need in the school setting in the form of a statement (although it has a new name now).

My DD sounds like she is more severe than your dd, so as is stands at the moment, she will be in mainstream but will need 1:1. but Sept 2015 is a long way off so who knows what progress DD will make and the same for your dd too!

I understand that you want DD to be as normal as possible and who doesn't? The tunnel does seem never ending doesn't it? But hang in there its not an easy road but you will reach a sense of peace.
when i see others the same age and younger too roaming around, I do think why can't dd do that, its not fair but then i reason That things could always be far worse, dd could be much more severely affected.

The future is quite scary, I try not to think too far ahead. Times may be harder for dd (and us), dd might have to battle but she does have the ability to do all she wants and enjoys even if it is with a bit of help and that I thank god for.
Hang in there, and keep talking x

We were utterly disgusted with the ed psychs evaluation of DGS. She too came to the house, discussed his level of understanding, numbers, colours letters etc, and our understanding is that his IQ is appropriate to his age but grossly affected by his physical and verbal disabilities. This is what Brainwave assessed him as.

The ed psych then went to his nursery and did standard IQ block tests, building towers etc. ffs he can barely put one block on top of another his hand movements are so rubbish, yet they insisted on a standard test despite our request for this not to be done because it labelled him with a severe learning disability and around age 2 (he's 5). Nursery, school, his portage and OT all said he would be age appropriate if he could move independently or speak! . Apparently there isn't a test as such that would measure raw intelligence for children like him so they stick with standard tests and wrongly label children.

We did get them to amend the statement but the SLD still stands despite my asking him today what phonetic combination completed 'sea' and 'feet' and he pointed to 'ea' and 'ee'! Makes me want to do some very unladylike swearing

Hello all,
I hope it is ok to join in this thread.
My daughter is 20 months and has CP, mostly affecting her legs and trunk. Her left side seems more affected than her right. She starting sitting unaided at about 13 months, she has been commando crawling for about 4 months and started four point crawling a few weeks ago, although she tends to move her knees together most of the time. She doesnt really like to move out of her comfort zone, so im thinking of getting the VTech 2 in 1 Zebra or a scuttlebug, to get her used to moving around the house independently and using her legs.
We have recently got a stander from physio (Leckey TotStander).
When we would stand her up before, she would not move her legs, as if she didnt know what to do with them, recently she has started to move them in a walking motion. She toe curls too and it seems as her left foot turns outwards slightly - does anyone have experience of this?

She was a full term baby, who had a difficult birth with MAS (meconium aspiration syndrome) as well as having severe Group Strep B infection which resulted in further issues including sepsis and suspected meningitis.

The wheelybug toys are nice for sitting and moving and the rounded body allows for a nice stretch of the adductor muscles. God when there is leg involvement.

Thank you Sneezecakesmum, i will take a look at those too.

Redfox. Welcome to the thread. I post quite a lot about my dd who is 2.9.

You will find a lot of people on this thread who are in the same situation. They have a lot of knowledge and experience and have been quick to post advice when I have asked questions.

Cp is a long road and difficult at times. Please feel free to talk and ask questions. I know that it really has helped me accept how things are. Albaba.

Thankyou Albaba :-)

Hi everyone

Have read through a lot of this thread and hope it is ok to join despite not living in the UK anymore. I left when 6 months pregnant with my now almost 13 month old DC2 and we were told on Wednesday that he probably has CP but they don't do an MRI here (Sweden) for about another year as the brain keeps developing. I'm not too bothered about an official diagnosis just now and it seems obvious that this is what he has - spastic in his legs - I'm just really glad he will finally be getting help as he hasn't managed to master any gross motor skills yet although his sitting has improved. His fine motor skills are excellent and while he's not talking he is making great attempts at it.
We have no idea how mild or severe it is, we bought him a sit-in walker a couple of months ago to give him the freedom to move and he can actually move really fast in it which gives me hope but the fact he hasn't managed to roll/sit etc makes me worry as it seems a lot of kids with CP affecting their legs do this themselves?
We have our first appointment at the rehab centre here (Sweden) on Monday which is really great.

I don't understand how this happened to him as he was born at 39 weeks by ELCS at maternal request so never any indication this would be likely although looking back I think it would have been obvious to a physio/neurologist from day 1. Turns out his legs are stiff rather than really strong!

Sorry to ramble on, it's been good to read through all your DCs achievements and get some hope for how things might turn out even if it takes a long time.

Hi everyone,

I hope you dont mind, but im after a bit of advice about speech.
My daughter has babbled and said some words like 'dada' 'clap' 'cat' since very early on. Her speech hasnt developed much more - she now says 'hiya' all the time, 'daddy' 'baby' bubble' 'mama' 'ana'(meant to be hannah), but they are all very similar sounding words. A few times recently she has said two words 'hiya daddy'.
She seems to understand everything i ask or tell her 'do you want milk/juice' etc 'can you get that ....', 'kiss', 'cuddle', 'crawl', 'lay down' 'take off your bib' - she understands when we ask her to stretch her legs or relax her legs - normally when changing her nappy as she has high tone.
She points to things, responds to her name, waves bye when asked, recognises nursery rhymes and does the actions, she sings 'ro ro ro' for 'row the boat'.
She did have problems with recurring ear infections and glue ear, but has since had adenoids removed, grommets put in, and a brainstem hearing test shows no issues. She has never had any issues with feeding and not a sicky baby at all.
Her consultant did mention speech therapy in March but wanted to see how she got on after having the grommets put in, we are due to see him again later this month.
Is there anything else i can try apart from the normal repetition, reading, singing etc? She is 20 months now.

Hi redfox welcome and welcome Borttagen

redfox, My dd (2.6) has a zebra and I can honestly say it is the best thing we have bought. It has given her her independence to explore and even cause some mischeif!! She whizzes around, can go though cupboards and into differnt rooms, explore the garden without relying on me to be at her side constantly. When we first got it 6 months ago, she could sit on it but was very wobbly and had a few tumbles but she soon with practice worked out how to scoot first with pushing both legs together and now moreoften but not all the time alternately which is brilliant and her stability has improved a million percent. I can't recommend it enough! It makes me so so happy to see her being independent
In terms of transitioning herself onto it, she mainly relies on us but is now working out with a little support on her core where to place her hands and how to pull herself on by herself.

You will see from some if my posts I am a bit worried about my DD speech, but from what you say, your dd seems very much on track for her age, even so I appreciate that wont stop you worrying!
We have been told that understanding is far more important than actual words, so the fact she understands commands is very positive. you sound like you are doing all the right things, We have been told to keep reading, siniging, repeating sounds back and also allowing silences and time for dd to respond without jumping in.

Bortaggen. DD didnt hit any gross motor skills for ages! Rolled at 14months, and sat at around 15-16months and it has only been the last few months that we have been confident to take the cussions away. sneezecake on here recommended the best book and now I tell everyone about it its called 'teaching motor skills to children with cerebral palsy and similar movement disorders' by s.Martin. I am constantly referring to it For tips and advise on exercises to encourage motor development, Are you seeing physio ?
The early days are really tough particularly the unknown, but on this board you have people who really understand and it has saved me. I hope Monday goes well.

Thankyou for your reply Summerdaydreams - we are actually going to buy a Zebra tomorrow :-) Im really excited after your post!!
She is very stable when sitting, and although she can just about get her toes in her mouth and is trying to four point crawl, she is only just working out what her legs are for!

Thanks for the advice about the speech, its hard not to worry about everything isnt it? I think because she knows we understand what she wants most of the time, she probably knows she can get away with just pointing or mumbling.

I hope everyone has a great weekend :-)

Thanks summer it's crazy how much it helps to hear other peoples stories! We are seeing a physio on Monday but I will look up that book too.

We actually have that vtech Zebra but haven't tried DS on it. Usually DD who is 3 uses it to race him in his toy walker. Great to hear it might be useful for him!
I have been feeling stupid for getting PIL to get DD a red rather than pink balance bike for Christmas assuming DS would be on it after her...

redfox your DD sounds like she is doing well? My DD is just 3 and never stops talking and she had fewer words than your DD at this age. I'm sure it's hard not to worry though, DS has been a crap eater from the start so I'm worrying about that for him even though he seems so much better than his sister was at the same age!

I've been looking at his feet all day today and the way his big toes point up and his leg and foot are tensed and thinking how the hell did I not notice?!