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Very mild CP - anyone with experience? How might it develop? Should she wear AFOs?

Annabelle6
Annabelle6 Member Posts: 7 Listener
edited November 10 in Cerebral palsy
Hi, I’ve just found out my daughter has mild CP - she’s 5 and it seems to just be affecting her with a bit of tip toe walking on the left leg and spasticity on that lower leg. People haven’t noticed but her gymnastics teacher highlighted it and now I can see what she means. Does anyone know how much very mild CP can develop? I’m trying to work out whether she should wear AFOs (we are seeing an orthotist soon and the physio thinks he will fit her for these). Any advice or experiences would be really welcome! Thanks 
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Comments

  • Reg
    Reg Member Posts: 99 Pioneering
    Hello @Annabelle26

    I have mild CP - it mainly affects my right leg - but we are all different.

    I had a brace and splint and shoe rises as a child - I am not sure that they made a big difference but the one thing that I did not have is physio. 

    I was really pleased to read that your daughter is having physio - I would recommend that you push for physio to continue if there is any suggestion that it should stop. Pilates and yoga are also good options as well as swimming in a heated pool.

    I am sure that your daughter will not let her CP side track her from doing what she wants. My parents tell me that I was far worse than my brothers at age 5 - managing to pull a radiator off the wall so I could use it to stand up.  

    Medics have told me that 'fashions' change so you will always see different views on Afos, braces etc but you just have to acknowledge that you are doing your best. Try not to worry about how CP  will develop as none of us are the same but any activity , rather than too much sitting down, is a good thing in my view.  
    Reg

    I am a Scope volunteer.
  • Annabelle6
    Annabelle6 Member Posts: 7 Listener
    Thanks so much for replying. How does your CP affect you now as an adult, do you mind me asking? Yes it seems that physio is really recommended, she’s also started yoga lessons and we are trying to be as active as possible. She walked at 15 months and it wasn’t noticeable she has any issues then, so I’m hoping it might stay mild for her, I don’t know whether that’s wishful thinking though as it sounds like it generally affects more with age? 
  • Reg
    Reg Member Posts: 99 Pioneering
    Hello @Annabelle26

    The main thing is do not worry -  we are all different and your daughter may not get worse with age especially if she makes the right choices.

    For example, I am sure I would be better now if there had been physio in my day or someone had explained why I needed to do yoga and pilates in my teens and keep up with it.

    I managed to do the uni thing etc and had a great career but with the benefit of hindsight it was too much desk work and sitting for long periods can be the worst thing for ageing with CP.

    I am sure that if you instil in your daughter the importance of yoga etc while maintaining the fun side and let her know that she can do and be anything she wants she will astound you as one thing that CP generally brings out as a character trait is determination!


    Reg

    I am a Scope volunteer.
  • Stayce
    Stayce Member Posts: 717 Pioneering
    edited November 10
    Hi @Annabelle6

    Thanks for sharing about your daughter. She sounds amazing.🙂

    I have CP which affects my right side and depending who I talk to it’s described as mild🙂

    I’d say as many have already said physio is key and swimming would help immensely too

    AFOs can be effective, and are usually the first thing to be suggested for toe walking and the cheapest option on NHS 

    My advice would be to discuss with the orthotist about the pros and cons of using an AFO 

    As what it will do in most cases is lock the ankle (even more so if not hinged), so if your daughter has any ankle range it will restrict this, which may or may not be desirable. It will also go up and include the calf, which will on the plus side mean it will not fire eg go into spasm, but it will also mean the calf muscle will not be being used when walking in the AFO, so will not bulk up in muscle mass, which can cause problems if you want to be in a position of not wearing it all the time (eg 24/7)

    There are other orthotic options available, if you want to be prepared for the orthotic appointment you might want to look at
     
     Heel cups that prevent toe walking
    Lycra Orthosis -DM Orthotics
     neuro insoles
    Specialist shoes that prevent toe walking
    SAFOs

    Hope this helps
  • Annabelle6
    Annabelle6 Member Posts: 7 Listener
    Thank you @Reg - that is great advice, I’ve really taken it on board. 

    @Stayce that is so interesting as this is EXACTLY my hesitancy with AFOs. She’s literally due to be given them after one appointment with an orthotic and that seems like so much trust to put in his judgment! Plus we can’t compare like for like in mild cases as I understand every case is different, so how do we know AFOs are effective enough to risk the cons you mention. I will certainly discuss the other options you mention, huge thanks. I also wonder if there is a very well renowned orthotics person I could pay to see for a second opinion on whether she even needs them?! The calf is already slightly smaller so if anything we need to build muscle mass on that side and how much weight bearing it is doing, and not give that calf an easier ride with an AFO. However the physio I spoke to has worried me about things getting worse if she doesn’t wear them. I don’t know how to make an informed decision on this?! 
  • Stayce
    Stayce Member Posts: 717 Pioneering
    edited November 11
    Hi @Annabelle6

    I personally think it’s definitely worth considering getting a couple of different opinions, especially given it’s your daughter’s first time with orthotics and her CP being so mild, it would also help you make a more informed choice for your daughter. You know her best and what her walking is like everyday. Don’t forget that - your input will be just as important as the orthotist. 

    Orthotics are not easy to get right first time, I’ve had almost everything on the list I sent you at some point or another. There is in my experience quite a bit of trial and error with any of them, but you find the right fit for you eventually and sometimes you make compromises based on positioning, comfort, appearance etc.

    The physio’s concern about things getting worse is probably to do with growth spurts as kids grow muscles with CP can get tighter and the Achilles‘ tendon can shorten further. This is probably their concern, it doesn’t mean it definitely will happen.

    Whilst exploring a range of options. You might want to try the AFO with your daughter and see what it’s like for her, but talk to the orthotist about wearing time - so she’s not in it the whole time for example, so as to reduce some of the cons. 

    The other option to discuss is a night splint rather than daytime AFO that would stretch the calf and Achilles, but you’d wear this in bed all night instead (so it’d be like a mini physio session going on offering a mild stretch during the night and then you’d take it off in the morning) Therefore not affecting weight bearing activity. I have found this option more comfortable (but that’s my experience)

    I do hope this helps. Message me if I can be of any further help
  • Annabelle6
    Annabelle6 Member Posts: 7 Listener
    Thanks @Stayce I’ve been mulling this over. Finding it so tricky to know what to do and trust an Orthotist. I’ve also spoken to some CP consultants who think in some cases AFOs hinder progress, or they are good when needed for functional reasons, but not in a preventative way. I guess the argument for them in my daughter’s case is to do with her tip toe walking on the affected leg (not constant, but quite a bit) and the knock on effect on her gait etc. There’s just no way of knowing what kind of positive or negative impact AFOs would have. One consultant did warn me against night time use as well. 

    I’m finding this such a dilemma! 
  • Stayce
    Stayce Member Posts: 717 Pioneering
    edited November 13
    Hi @Annabelle6

    I totally get your dilemma as my parents had a similar time.

    I did not wear orthotics until I was 15 (I’m in my late 30s now). I don’t feel it was a bad call, personally.  By 15 I was in a lot of pain, so needed them. We make choices based on circumstances at the time, it’s all any of us can do, if that helps

    If you’re not sure why don’t you talk to orthotist and physio about building review points to re-evaluate the situation?

    Hope this is of some help
  • Annabelle6
    Annabelle6 Member Posts: 7 Listener
    Thanks @Stayce, what were your CP symptoms like when you were around 5, can you remember? This is all so knew to me, I’m trying to sort of evaluate how my daughter is getting on and what to expect? Good idea to be open with the Orthotist about my concerns. 
  • Annabelle6
    Annabelle6 Member Posts: 7 Listener
    New not knew! Bad grammar  :D
  • Stayce
    Stayce Member Posts: 717 Pioneering
    edited November 14
    Hi @Annabelle6

    As you’ve said yourself in earlier posts every CP case is different, no two are alike, so I’d try not to evaluate how your daughter is getting on compared to others with CP, (I know it’s hard), but concentrate on the progress that she makes, the milestones she reaches, tasks she accomplishes, otherwise you’ll be constantly looking for comparisons, if that makes sense.

    When I was 5 - my balance was wobbly, very reliant on my good leg. I’d climb stairs one foot-one foot per step. I don’t have normal toe to heel function in my affected leg, so walked on the outside of my foot and toes (still do, just less so in orthotics)

    I’d be open with the physio and orthotist about your concerns, discuss with them other options, if you’re still not sure, don’t close the possibility down, keep it open so you can review at a later date.

    Hope this helps
  • TLW51
    TLW51 Member Posts: 4 Listener
    Hi. I'm 51 with CP. I was told I didn't walk until about 5. I have an exaggerated limp. Back pain has always been ridiculous. I wore a brace on my left leg, which is affected more than my right as well as an afo. The afo actually gave me blisters and I quit wearing it because I felt like it wasn't doing anything. 

    Knowing now what would have helped early on in life, my suggestion would be to help her focus on the things that will help her later in life and make them habits now. Things like nutrition and appropriate exercise.

    They say CP isn't degenerative but I can tell you firsthand I'm a lot worse off physically now than I was when I was younger. 
    I've also had breast cancer twice, a c4 through C6 neck fracture, a bowed spine and all back muscles ripped out. So I'm not sure how much to attribute to each issue.  
    Throughout my life I found that it also affected my self-esteem. Now you seem like a supportive parent, something I never had, so that's going to make a HUGE DIFFERENCE. 

    I always felt that there wasn't anything I was good at and wished that I had found something that I could become good at.

    I taught Pre-K for about 26 years, sold insurance for about three, and had various other administrative jobs, etc. Worked my butt off, but it helped me to feel more average like everyone else. 

    I also became a single mom 17 years ago. With CP that is no joke! I have the greatest son in the world though. 

    To me the most important thing is supporting her, teaching her things about nutrition and physical therapy early on, creating good habits early on, and helping her discover whatt she'll be good at. 🌺
  • Annabelle6
    Annabelle6 Member Posts: 7 Listener
    Oh bless you, that sounds full on! Yes I’m so scared about it getting worse. In fact, that’s all I’m scared of because she’s fine at the moment. She walked at 15 months, and at the moment it just doesn’t really affect her - she can do most things, you’d see her as just a not particular agile or sporty child. You can see the reliance on her good leg if you know and watch, and it’s the effect of that that’s worrying. I support her so much though emotionally, I just want to get the physical right too. 
    What do you mean when you mention nutrition - anything in particular other than being healthy? Any particular foods that are meant to help?
    @Stayce my daughter does that with the stairs walking - good leg up and then bad leg meeting it. Don’t know if she’s always done it or not but now we are looking. I am getting her to walk each leg up a step, which she can easily do, just like she can put her heel down when I say “heel down please” but she will then go back to top toeing a lot of the time. I can’t stop comparing cases and trying to work out how to help her best - I guess the only major decision for now is the AFOs because physio I have no doubt is a key focus. 

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