What therapies for mild CP/sleep and behaviour issues?

[minipie]

DD is nearly 5. She has mild CP, left sided hemiplegia.

Physically she is doing really amazingly well, can walk run jump just appears very clumsy and tires easily when walking. Very very mild physically.

Most of the issues we have are down to tiredness and the knock on effects. She sleeps 10.5 hours a night (very early waker) and it really isn't enough, especially with the CP, so by lunchtime and beyond her behaviour goes way downhill, as does her concentration and coordination. Not sure whether the poor sleep is due to the CP or a family trait.

The only NHS treatment she gets is physio every 6 months and melatonin (which doesn't help with the early waking but is useful for getting her back to sleep after a night waking).

We have money available to spend on other therapies that might help her, and would give anything promising a shot, but there are so many out there! And DD's time and energy is limited especially now she is at school. So, I would welcome any advice on what is worth trying, especially anything that might help her sleep and relaxation levels.

Here's the ones I've heard of (though don't know much about most of these)

• Bowen
  
• Bobath
  
• Conductive education
  
• Tinsley House
  
• Retained reflexes
  
• Visual tracking
  
• Cranial osteopathy
  
• private physio
  

Any help on narrowing the list down would be much appreciated.

thanks

[Polter]

Cranial osteopathy (with a proper osteopath registered with the Sutherland Society, not a chiropractor) worked a miracle for my ds. I am usually mega cynical of anything a bit woo, but the impact after just the first session was so surprising and just got better and better. It's not extortionate and even if it doesn't cause a miracle, you'll know quickly if it helps, adults I know who've had it done found it incredibly relaxing.

[minipie]

Thanks Polter! I did take her to one as a baby, but not since, so could look him up. She is a very tightly wound child - running on fumes I think.

[Polter]

Have you looked at general sensory stuff? The Out of Sync Child might be worth a read.

[minipie]

Actually I have had a flick through it (friend's copy). She doesn't have the usual sensory issues like problems with food or noise or clothes. In fact she is the other way, a bit under sensitive physically (can't tell face is messy, doesn't really mind bumps and bruises) and is quite sensory seeking. Is there something that would help with that? I have actually just ordered a wobble cushion but have no other ideas?

[Polter]

Anything that means she has to balance, e.g. Wobble board, gym ball, riding
Trampoline
Body sock (ds's favourite thing)
Fidget items
Climbing and pulling activities
Bilibo
Beanbag
Theraputty
Rolling and squeezing

[Polter]

You don't need to buy overpriced sensory/disability versions (except perhaps the body sock).

For example:
<a class="break-all" href="//www.amazon.co.uk/gp/aw/d/B00QTJ1M6W/ref=mp_s_a_1_5?ie=UTF8&qid=1505148807&sr=8-5&pi=AC_SX236_SY340_QL65&keywords=wobble%20board&dpPl=1&dpID=61L-dEQwp%2BL&ref=plSrch&tag=mumsnet&ascsubtag=mnforum-21" rel="nofollow noindex" target="_blank">wobble board
<a class="break-all" href="//www.amazon.co.uk/gp/aw/d/B01FPQEJUU/ref=mp_s_a_1_4?ie=UTF8&qid=1505148886&sr=8-4&pi=AC_SX236_SY340_QL65&keywords=gym%20ball&dpPl=1&dpID=41vmaKP-BIL&ref=plSrch&tag=mumsnet&ascsubtag=mnforum-21" rel="nofollow noindex" target="_blank">gym ball
<a class="break-all" href="//www.amazon.co.uk/gp/aw/d/B000OS0LNO/ref=mp_s_a_1_5?ie=UTF8&qid=1505148954&sr=8-5&pi=AC_SX236_SY340_QL65&keywords=foam%20camping%20mat&dpPl=1&dpID=41hZdqgWeBL&ref=plSrch&tag=mumsnet&ascsubtag=mnforum-21" rel="nofollow noindex" target="_blank">mat for rolling up and squishing

[Polter]

<a class="break-all" href="//www.amazon.co.uk/gp/aw/d/B00AA74Q1C/ref=mp_s_a_1_1?ie=UTF8&qid=1505149032&sr=8-1&pi=AC_SX236_SY340_QL65&keywords=bilibo&tag=mumsnet&ascsubtag=mnforum-21" rel="nofollow noindex" target="_blank">bilibo

[minipie]

The trouble with physio/OT type stuff is getting her to do it! She's exhausted after school and weekend afternoons, Sat am is ballet and swimming. The wobble cushion I thought could be used at mealtimes/TV time, can some of the others be used during "down time"?

[Polter]

Same. I just have the stuff about the house and use it myself too.

I've never used them as distinctly therapeutic activities, they're just there, ds might get in his body sock while being read to or wrap himself up tight. We used to do squashing and spinning before school and on the way, twirling as we walked. Bean bag or gymball are ideal for while watching TV, maybe a weighted lap cushion too (you can use a wheat filled microwaveable thing like <a class="break-all" href="//www.amazon.co.uk/dp/B00OYBG6YA/ref=cm_sw_r_cp_api_IESTzb8GR0WKC?tag=mumsnet&ascsubtag=mnforum-21" rel="nofollow noindex" target="_blank">this

[minipie]

Thanks. We have a large bean bag and I think we have a fiddle toy somewhere - bought before I knew what it was! - so can try those for tv time (at the moment she tends to chew clothes while watching). Body sock I'd never heard of but she has a mermaid tail blanket she loves, similar effect I guess.

Any experience of Bowen or retained reflexes therapy? I'm trying to find out if they have any effect on sleep or calmness but haven't found much so far.

[youarenotkiddingme]

Have a look at the low tray tables. My ds does his physio/wears his night splints and sits at this watching TV/ having dinner etc.

He's also knackered physically after the day (and swim trains 4 hours a week!).

I've been told the tiredness comes from the effort used to co ordinate movement throughout the day and agree with polter that working on sensory stuff (which is based on retained reflexes theory) is very helpful.

I'm also an advocate of cranial osteopathy because I've heard so many positive stories about it.

If she's waking on night isn't due to muscle spasms or tightening that's related to the CP? My ds had melatonin (has autism and struggles to fall asleep) but he's woken frequently because he has nocturnal myoclonus. Once awake he then needs a wee and once he's up and we go through it again 😫

Bacofen etc can make a huge difference in children with CP who have hypertonic presentation and/or spasticity.

[Polter]

youare can I ask where you've come across the idea that sensory stuff is based on retained reflexes? That's not my understanding at all.

[youarenotkiddingme]

The information I got was direct from sensory ot. But that's because ds is dx with sensory motor difficulties rather than SPD.

This is an excerpt from brain centre that sums it up * Primitive Reflexes* are the first part of the brain to develop and should only remain active for the first few months of life. ... Retained primitive reflexes can lead to developmental delays related to disorders like ADHD, sensory processing disorder, autism, and learning disabilities.

Things like the Moro reflex are related to the startle reflex. Children that retain this cannot walk with feet turned in or out without the hands doing the same. The baton pathways haven't developed for them to separate these movements. It also relates to startling easily so related to sensory processing difficulties related to noise. There are about 8 other difficulties that can be experienced with this retained reflex.

There are 8 (?) Primitively reflexes in total.

[minipie]

Thanks youare, I will look at low tray tables. And must look up that cranial osteopath!

She doesn't wake in the night too often these days, it's more an early morning issue, although we do get frequent wakes during growth spurts and I think that is related to muscle stiffness as she complains of leg pain. However it's just when growing, no spasticity so I don't think she'd be considered for Baclofen.

She's still in nappies at night as I daren't have her waking up for a wee, it takes her hours to go back to sleep!

[Polter]

Hmm. I'm not really convinced by retained reflex theory. It would be more credible if it didn't suggest RRs were responsible for things like ADHD, autism and so on.

[youarenotkiddingme]

Yes ds current difficulties are related to growth.

He's grown 7cm in a year and at 5"1 and 13 with tall family will likely grow another foot in the next few years

His physio told him although the physio isn't improving things he has to stick with it so he doesn't become fixed and need surgeries.
He wasn't impressed with her. Or impressed she told him he wasn't in pain he was experiencing muscle stretching.

He may have murmured out loud that unless she's experienced it she doesn't getting to fucking comment just because her degree defines pain as something like an injury.

[Polter]

He's right of course

[youarenotkiddingme]

They aren't responsible but there is a relationship between retained primitively reflexes and the behaviours these can affect - and that many of these behaviours are found in ADHD and autism etc.

It's a bit like allergies and asthma. There is a direct link that some asthma's are caused by allergy - but having an allergy doesn't mean you'll have asthma. Asthma has many different route causes but the dx is based on clinical findings.

In ds case he's retained some reflexes and has the co ordination and sensory behaviours related to the ones he's retained.
It's not thought or known that his hyperreflexia , muscle tightness and myoclonus are related.

I've spent too many hours researching it and some of it seems very credible and certainly rings true in ds case. Despite this I'm not a believer in retained reflex therapy. I feel that's a step too far in thinking you can 'cure' it. I do believe in sensory processing therapy though. (Iyswim?)

[youarenotkiddingme]

I did have to hide a snigger

[minipie]

Of course it's pain that's like telling someone labour contractions aren't painful because they aren't an injury. Your poor DS. Does nurofen help him?

[youarenotkiddingme]

It can improve things sometimes.

He has very tight TA's as well as tight hamstrings and quads and arms that don't straighten! Well they so if you straighten them for him but his fingers twitch and his little bi ceps pulsate a little!
So when he walks even a little during a growth spurt it pulls his Achilles tighter and then causes pain in his heels as pulls there too.

He also can only balance on one foot and balance his body if he uses his right arm everytime he moves.
If anyone knew why I'm sure we could help improve things more for him. He has a clear MRI though so it's a mystery.

Hemiplegia was discussed with regards his presentation but he has no diagnosis re muscle difficulties. He has a dx of ASD though.

[minipie]

Hmm DD's MRI shows quite clear damage despite her very very mild physical symptoms. So if his MRI is clear... a mystery as you say. Guessing you already tried magnesium/epsom salts? Botox?

[youarenotkiddingme]

Just physio so far although he's had orthotic insoles for a number of years.

I'm hoping we'll get some idea of how to help him at next appointment. A diagnosis won't change anything presentation wise but may come with a treatment they'll try!

[minipie]

Hope they have some good ideas for you. Magnesium supplements or epsom salts in the bath might be worth a try, they aid muscle relaxation - unlikely to be a silver bullet iyswim but might help a little and won't do any harm anyway. best of luck.

[NotHelicoptering]

Hiya, your post caught my eye as the physical side sounds like DD. As a baby she showed obvious right hemi and was diagnosed, but then appeared to get so much better I'd forgotten(also an ASD diagnosis took over). I'm starting to realise that despite looking so good she does tire so easily and it's the root of buggy use and the amount of falls she still has at 5. Realising I need to make allowances that I haven't.