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How to find a practitioner for retained reflex syndrome

(40 Posts)
Dancergirl Wed 23-Apr-14 11:42:31

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?

salondon Wed 23-Apr-14 14:29:15

Hi

This is an area I am very interested in looking too..

What did David Mulhall say?

Thanks
SA

Dancergirl Wed 23-Apr-14 14:33:08

I didn't speak to him directly but to his assistant. Sounded very professional and I got a good vibe but very expensive!

salondon Wed 23-Apr-14 15:04:33

They are all like that.. We went to hemispheres and didnt like them too much either

oddgirl Thu 24-Apr-14 12:31:39

Hello...I think we went to the person in Windsor...is it Bob? He was really very good. We went for about 18 months and went through brushing and exercises...has it made a difference? Possibly...but its hard to tell without a "control" and I am not sure how bad Ds woud have been without it. The biggest area of development was an improvement in balance and also bedwetting. Feel free to pm me if you want more info. Expensive though...

TB55 Sun 03-Sep-17 15:47:45

Hi there,

You may have found someone now but we went to the Mulhall clinic on a recommendation of a colleague.

We completed the programme and it's like I have a different son! Yes it is expensive but if you do what they tell you to do (specialist exercises using certain instruments) every day you will see an improvement. As well as many issues bed wetting was a huge problem but thankfully it no longer is. He has matured considerably, he no longer screams when startled, his movements seem much fluid than before and considering he has now been chosen to go on a development pathway for an Academy of a premiership football club we can see the difference it has made.

Alex Mulhall (David's son) carries out most of the appointments and he is extremely professional and knowledgeable. They provided us with a very detailed report explaining everything and for the first time his behaviour and everything about him being 'a bit different' made sense. We used to get so frustrated with him before we understood what was going on.

I remember when we were considering attending and considering the cost, my husband said to me this could be the best money we've ever spent, and he was absolutely right.

All treatments are non medicinal and it is not a quick fix, you need to be committed to completeling the programme, but when you do it would have been completely worth it.

Hope this helps. Very happy to provide further information.

tartanterror Sun 03-Sep-17 20:14:21

It's tricky isn't it? We went up to Chester (from London) for an INPP assessment. It was pretty gruelling - the train journey was fairly long and then the appointment seemed to go on forever. DS was tired and became increasingly less compliant as the day went on so some of the test results at the end weren't clear. The main person at INPP is Sally Goddard Blythe and she did our first screening in London. She seemed very knowledgeable and we went ahead on the basis of our discussion with her. Her assistant Stephanie did our assessment in Chester. Unfortunately our son did not bond with Stephanie during the appointment and it made me re-think how practical it would be to start a programme with them in earnest. I got the impression that the London clinics were shared between Sally & Stephanie so it might take longer to complete a programme if we wanted to see just one - and we wouldn't know if DS would be happy with Sally either. He did seem to be happy to do the exercises tho which I understand can be the usual problem - do you have a compliant child? If not think carefully as it will be just you two having to do the exercises day in and day out with appointments every few months. We were given one single exercise to do (the astronaut) which I understand is one of the most basic ones to do with vestibular functioning. We were supposed to do it every day for 30 days - we were doing some other exercises so we haven't managed a steady run of that length yet. I was hoping to start again now that school has started again and complete it before the Oct half term but I doubt we would get a London clinic time slot now we've left it so late. I'm also thinking about finding someone closer so will watch this thread with interest. I have friends who used INPP from London and were happy. Sally has written a couple of books about RR - I read one of the more technical ones and found it informative - especially alongside books on brain plasticity by Norman Doidge and some of the Anat Baniel Method stuff.

Waitingforsleep Mon 04-Sep-17 13:46:43

My son who is 6 had a sensory assessment last week and they commented about him retaining reflexes, what exactly is this as I'm unsure?

tartanterror Mon 04-Sep-17 20:09:13

When humans are born they have reflex actions to carry out certain functions automatically- e.g. Grasping and holding on, startle, suckling etc. As the baby matures brain and body develop, the child needs different movements to function. The original reflexes are no longer needed and "postural" reflexes like leg kick and head righting etc take over. Some original reflexes fade away; some change and some new ones arrive. (I'm no expert so apologies for this explanation!). The process takes months for some reflexes and years for others. It seems to have something to do with "developmental movements" triggering the next stage - i.e. Crawling is a key movement and if your child didn't do that "properly"so that the movement was fully integrated in the brain, the next stage is disrupted. So Retained Reflex issues are where early stages are incomplete (fully or partially) and this affects current function. It's likely that in the whole population many people are affected and it may or may not matter to differing degrees. For kids with additional difficulties getting the brain working better seems to help reduce the number of hurdles they face. A well ordered brain comes from a well ordered body as many OTs seem to say. Hence why (imo anyway) there are such varied reports of success/outcomes as everyone's brain and body are unique based on their experiences plus environment.

At my son's assessment we were told he had issues with a handful of reflexes to different degrees and that vestibular was the first one to tackle - the idea is that by sorting out a problem with the "foundations" other items might fall into place. Vestibular is absolutely critical for human function. The RR talk about It affecting the ability to sit upright at a desk but this is for mild problems. For those who have major difficulties or have no vestibular function left, they just can't function at all - they find it hard even to lie on the floor as they feel like they are spinning out in space. No one in that situation can manage basic function well never mind higher level skills in the academic or social sphere....

So although we haven't done the INPP 30 days of astronaut we have done quite a few days of the Robin Pauc Brain Food Plan book exercises (we've done nothing else from the book) as these target vestibular function. His body movements seem to be getting better/smoother and it's a lot cheaper than doing RR therapy! I think we'll give this a go to see how we get on and then maybe have an RR follow up next year.

I hope that helps a bit waiting - RR therapy is just one way of accessing brain plasticity by repetitive stylised movements. There are probably other ways of doing the same thing but RR is one particular approach

abc12345 Wed 13-Sep-17 21:38:25

I took two of my sons to Bob Allen in Windsor for v different reasons and saw incredible results in lots of areas - concentration, bed wetting, balance, coordination, sensory processing, anxiety, speech etc etc lots of people I know have been to see Bob too and we have all been really impressed with the improvements we have seen.

I chose him because he was highly recommended and the INPP will only see over 7 year olds and seemed to be expensive.
Bob also uses brushing mostly which I found v easy to do with the boys (rather than the exercises that they may refuse to do!)

zzzzz Thu 14-Sep-17 00:42:18

Sounds weird (sorry I'm not trying to be rude I just have never heard the details of all this), what are the treatments?

Usernamealreadyexists Sat 16-Sep-17 14:14:26

Message withdrawn at poster's request.

abc12345 Sun 17-Sep-17 07:32:32

zzzzz - it does sound weird! I was a total skeptic. I think I only went out of desperataton and because an OT and speech therapist both mentioned it.
It was even weirder when my ds went through terrible twos but then came out the other side a different boy a week later. When we were doing his sucking reflex he started googoo gaagaa-ing and making weird noises, then a few days later his speech began to improve dramatically! It's v strange but totally amazing.
Now I know loads of people that have taken there kids, with a variety of sn or just for anxiety, concentration problems, sleep problems, bed wetting etc. And we've all been so impressed.
Now I see kids everywhere that this could help!!

Username - because the appts need to be 6 weeks apart we managed to time it for half terms/ school hols.

What method does DM use? We did the brushing method with bob which was pretty easy, I'm sure the inpp type expercises work too but I don't think I would've managed to get ds to cooperate twice a day everyday. Xx

zzzzz Sun 17-Sep-17 14:21:49

I think it's important to be aware that autistic (if that's the issue) children often develop in huge jumps like this anyway. If course I don't know what "brushing" actually involves but it sounds totally incredible.

I do wish there was more transparency in all of this. Surely by now there should be reliable data in all bonafide therapy? Especially if nhs salt and ot are recommending it.angry

Then again there isn't that much evidence as to how salt impacts end results.

blankface Sun 17-Sep-17 15:56:52

Dd's NHS OT (who was absolutely brilliant) explained all about and tested dd for retained reflexes around 15 years ago, perhaps it's just another service that has been dropped from the NHS due to budget restraints, hence the OT's nowadays recommending it being sourced from non-NHS practitioners?

Is the brushing referred to nowadays gentle skin-brushing using medical scrub brushes (soft brushes provided by the OT) and followed by joint compressions? If so, as above, the OT showed me how to do that then as well.

Interestingly, the OT also told me that they offered information and treatment on the more unusual therapies only to the parents who they thought may wish to try them.
Parents who were of the 'I want only evidence based scientifically proven treatment' viewpoint would never have been offered certain therapies by the OT in the first place.

zzzzz Sun 17-Sep-17 16:58:27

Parents who were of the 'I want only evidence based scientifically proven treatment' viewpoint would never have been offered certain therapies by the OT in the first place.
shock

abc12345 Mon 18-Sep-17 17:24:42

Zzz - My son is dyspraxic not asd and can now do lots of things we were told he may never do (ride a bike etc).
I think the problem with proving any of these therapies is that we are often doing more than one thing at a time (for us retained reflex therapy, AIT, speech therapy, ot) and like someone else said there is no "control" so you can't say what they would be like if you hadn't done it.

I think it really helped me to have friends doing it too because I kept thinking "am I imagining this?" or "it must be coincidence" but when the exact same thing happened with their kids I knew there was something in it. (Things like anxiety disappearing and sensory issues going away)

I've read just about everything there is to read on the subject now. I'll post some links in case any of you want?to read up on it...

abc12345 Mon 18-Sep-17 17:29:42

Bob Allen doesn't have a website, he's a bit old school but he has trained this lady
jo-rodhouse.co.uk

This book explains all, it's s bit pricey but you can get from library

www.amazon.co.uk/gp/aw/d/111916477X/ref=ox_sc_saved_image_1?ie=UTF8&psc=1&smid=A4MAXBOL4G9OC&tag=mumsnetforum-21

Lots of research here
www.inpp.org.uk/research-publications/

abc12345 Mon 18-Sep-17 17:38:04

Blankface - I think that kind of brushing is still offered as part of a "sensory diet" I think it's called these days but what I'm talking about is not think kind, I think it's called "skin stimulation"... you basically stimulate the reflexes (e.g. The desire babies have to grasp something in their palm) and if you do it consistently for weeks it goes away for good (so it's possible to do more complex things with your hands)

It has been around for years though because bob has been doing it for 20 years!
I've heard that reflexes used to be tested in schools until the 70s when they went out with budget cuts...

rosalux Tue 19-Sep-17 18:11:42

abc12345 I would be really interested to hear more about your experiences with RR. I took DS1 (6yrs) on the ASD pathway, to see Bob Allen last week and we are starting with the brushing exercises. I am profoundly sceptical but find myself really wanting it to work. Any more information about RR and/or Bob that you could give me would be much appreciated. Feel free to PM me if you would prefer.

abc12345 Tue 19-Sep-17 23:09:32

There's loads of info on here if you search. Lots of people have been to see Bob! What would you like to know?

I assume it's different for everyone but with ds there seemed to be a period (a week or so) of worse behaviour and then a dramatic shift for the better after each stage. We saw improvements in everything - anxiety, (many) sensory difficulties, concentration, school, social interaction, speech.
I was seriously skeptical but now I can't recommend it highly enough.

I think we had appointments every 6 weeks and went back about 7 times, that will differ for everyone as the reflexes they have will be different and some kids need to take things a bit slower.
Ask away if you have any questions...

abc12345 Tue 19-Sep-17 23:11:41

Ps. Did you see my links for the book and websites. There's lots of interesting research and Info to read on them

rosalux Wed 20-Sep-17 08:10:55

abc12345 thank you. I did look at your links, but couldn't access any of the articles on the INPP website. I found a book by Sally GB on amazon, but it's £42 (!!!) and the reviews suggest highly technical. I'm not sure if DS1 has been better or worse in the last week - sort of both really. For me it's really the anxiety I want to address most as this is at the root of his challenging behaviour (of which we see a lot) but also his sensory difficulties and social interaction are issues. I didn't think to ask Bob for a breakdown of DS1's reflexes and which are the most retained - I will next time we see him. How did the exercises change over time? At the moment it's just neck to tailbone brushing and DS1 wriggles around a lot - I'm not sure if that matters.

abc12345 Wed 20-Sep-17 14:21:22

Yes it is expensive. I got it from the library.

For us anxiety/ happiness got better really quickly and continued to improve over each session- that improved life considerably for everyone!! (Apparently it's to do with turning down the amount of adrenaline produced)
I think it really is different for everyone, depending on which reflexes he's got bob will give you something that targets that reflex, it's usually brushing but sometimes an exercise. We found it became routine like brushing your teeth and ds never resisted it, he quite enjoyed it.
Ds found the back one v tickly and then after a few days he was fine with it, I think that showed his spinal gallant reflex had switched off.

You might get front brushing next, that was the worst one for behaviour but then he seemed so much better after and more confident.

Please keep us posted on how you get on. It's so interesting.

abc12345 Wed 20-Sep-17 14:25:35

Here is a breakdown of each reflex and the symptoms...
www.mychildwillthrive.com/wp-content/uploads/Primitive-Reflexes-Cheat-Sheet-Final.pdf

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