How to find a practitioner for retained reflex syndrome

[Dancergirl]

I have been doing some research into retained reflex syndrome and some of the symptoms really do sound like dd2 (11).

How do I find a reliable practitioner? I have spoken to the David Mulhall Centre in London and also someone on MN kindly gave me the name of someone in Windsor.

But I'm a bit wary of parting with money when I don't really know the first thing about them. Can anyone help?

Many thanks abc you're right, it was sensory brushing stuff. I don't post here often because my experiences of trying to get help at primary level are not exactly current.

I read through the pdf file you linked to and our OT did indeed test for RR, I particularly remember the one where dd had to be on all fours with some space around her then the OT turned her head in a certain way and explained that if that PR was retained, her leg would involuntarily shoot out. It's fascinating stuff, but the brushing you mention wasn't offered then.

For core strength we use Pilates and for poor co-ordination, we also tried Alexander Technique which is often used horse-riders particularly to perfect dressage techniques and actors to help them be more aware of their movements. I was always fascinated that the exercises to achieve the end-task never seemed to have any logical relation to that task but somehow achieved it and once that movement had been learned, it was learned for good. Sadly the AT teacher moved away and there were no others in the area, otherwise we'd have continued with that.

We have been on the waiting list for the NHS paed for about a year too. We got desperate and paid for a private paediatrician and he was diagnosed within the week! (That was £200 well spent because I could make people listen to me after that).
Is that behaviour worse than usual? It might be the RRT working. If it is he will get better. This therapy really worked for ds. He still has problems but they are so much more manageable now.

Another thing that really helped me figure out what was going on was seeing a really good sensory trained OT. she managed to give me a good idea of what was going on and write a professional report.

That's interesting blankface I've never heard of the Alexander technique used in that sense. Was it a class or a 1:1?

It was 1 to 1 we used to go with a specific physical action that was causing a lot of problems, the AT teacher would demo the exercise(s), they'd be done there a few times and then dd was able to do that specific physical action, despite the exercises bearing - to me - little or no resemblance of that action at all.

the AT teacher used to run a group at a swimming pool specifically for kids with co-ordination problems but that was too far away for us to travel.

I've just received the Attention, Balance , Coordination book by Sally GB today so I'm going to have a read and see if I can make sense of it. I feel as though DS1 is improving, though we have a long (long) way to go and I'm also conscious that he has a very experienced TA (new) trying some ASD specific strategies at school too. It's so hard to know what actually makes a difference.

Good luck. It's a bit of a text book but I understood it ok. It was particularly interesting reading the bits that applied to my ds (e.g. The sensitivity to noise and how a 'retained reflex' would cause it)

Keep us posted. I'm fascinated by this stuff!

Ps. I googled Alexander technique and it seems it is similar the the retained reflexes stuff

Just a quick update: we had our second appointment with Bob on Monday and DS1 seems to have lost most of the spinal gallant reflex. I’ve definitely noticed improvements in behaviour at home (not sure this is true about school) but it’s incremental rather than sudden leaps. And we still have tantrums/meltdowns just not as often and much shorter. Sometimes I can almost see him thinking before reacting and then actively choosing to walk away/talk himself into a different thought pattern. Hopefully this will continue. We are now doing lip to pubis brushing - not sure which reflex this targets - and will return just before Xmas.

I’m glad you are seeing improvements already.

Out of curiosity... how is your ds since you started the front brushing?? Mine went nuts for a couple of weeks and then improved dramatically

Interesting you should say that. He’s been variable at home, but better than before we started seeing Bob, but finding school much harder and is worse there. When you say your DS went nuts for a while; what sort of behaviour are you talking about?

When we did the front brushing he had lots of tantrums and did lots of out of character things (refusing to do things/answering back etc). It was only temporary but he seemed a bit explosive for a while and then got dramatically better

That sounds familiar! I think he’s being quite volatile at school and and certainly he’s on edge quite a bit at home. It’s been a week now so hopefully if it is the brushing it will improve in a week (or two or three...?)

I think it was 2/3 weeks for us. The front brushing was the biggest reaction we got, the other things we did he took much more in his stride.

We are now 3 weeks into the front brushing and it’s brutal. Near constant rudeness and micro aggression, acting out at school and after school club interspersed with being surprisingly nice. Not as violent as before and more amenable to requests but the moaning and the screaming and the endless negativity are really wearing me out! Hope it passes soon

Roslux, I know it’s an old thread but would love to hear how your son got on in the end after all the brushing? I am tempted to start this but would love to hear from someone who has finished the therapy. Thanks

Sunsek, rosalux may not see your question.

If you start another post with
@ rosalux without adding any spaces between the @ and her name, then the MN system will automatically email her and send her a link to your post.

Or you could get in touch with her yourself using the 'message poster' button on one of her posts.

Our OT/physio team said NHS could not recommend as no scientific evidence. I'm on the fence. Think is must be worth a try though, as seems to be quite a bit of anecdotal on these boards that it does help. Cost did put us off, though Chester would be do-able.

Have watched a few youtube videos and Sally's book on my reading list. I think any movement based therapy must do some good - though I am impressed reading your stories of break throughs!

Sorry didn't realise was a zombie thread... still interested to hear experiences

Vasillisa, I would give it a try. I was really sceptical but dd struggled with anxiety, was unsporty and had unclear speech, so when I read about it I thought I give it a try but didn't really expect it to work!. The effects were amazing, though! After a couple of weeks of simple backstroking her separation anxiety had improved dramatically (e.g. she would not sleep in her own bed at all but now insists on it), her running style improved visually (it always looked wrong, and now it looks pretty normal, iykwim) and consequently speed and endurance improved (which is amazing because she can now join in with games during break time, previously she was left out as she couldn't keep up with her mates), also hand eye coordination improved (she suddenly got really good at badminton and tennis after spending years missing almost every ball) and improved upper body strength (she never before had managed even swinging from one monkey bar to the other, now she suddenly does entire rows with ease!). Even in her fine motorical skills we see improvements. She had always been good with her instruments but she made a noticeable leap in the technical aspects of her violin and piano play. I am absolutely flabbergasted at her sudden progress. It's a couple of minutes of brushing in the morning and in the evening, so it seems ridiculous that something so simple can have such an effect! I hope the progress continues but I am pretty sure it will as the therapy seemed to reverse a negative spiral (anxiety and trouble with coordination stopping her from playing actively with friends, leading to more social anxiety and less overall fitness) and started a virtuous cycle (more confidence and better coordination leading to more fun at being active leading to more practice and developing more physical and social skills).

Bob Allen now has a website:

www.accesspotential.net

Great results from his treatment programme with all my 3 children !

Hello

Can anyone help please. I’m desperate to find treatment for what I believe to be retained reflexes in my 15 year old dd in Leicestershire or the East Midlands ideally. I’m not sure where to try, if not one of the big names further afield what sort of place would I approach locally or do I need to travel? Also would they diagnose at the first appointment to concur whether I am right? Any help gratefully received. Thanks so much.