Retained Primitive Reflexes

[Bobobab]

Looking for opinions and experiences... has anyone tried treatment for this? I've searched mumsnet and it seemed to be a lot of older posts and actually they were quite positive about how it helped. Has anyone used a practitioner in NW England?

I looked into in and found it really interesting but there were red flags for me that it’s not evidence based really so decided not to go ahead. There’s a place in Romily I was looking at at the time. Sometimes I do wonder if we should try it still but TBH my daughter is so demand avoidant I’d never be able to get her to do the required daily exercises anyway 😅

Thanks for the reply and this is where I am with it... it's tempting to try just to see but then we could spend that money and time on something more worthwhile. It was the place in Romiley I was looking at too but struggling to find recommendations or anything on local SEND parent groups.

Yeah we had a course of sensory integration therapy through the children’s OT NhS service and I came to the conclusion that that is the way to go. The waiting lists are crazy though 😞.

We've just gone private for a sensory integration assessment (waiting for the report) In our area they do a 2 hour parent training course then you are discharged 😡

I'm interested in retained primitive reflexes. Our OT did a sensory profile and said there were retained reflexes but we've parked it for the time being as we're focussing on keeping DS regulated.

Yes, been there, did exercises religiously daily for 2 years. We travelled to BIRD (charity). The people were lovely but for DS despite him losing a number of retained reflexes over that time in terms of his presentation it made no difference/ there were no improvements.

Do you mind me asking what you were hoping it would improve in your DS @carriebradshawwithlessshoes ??

Not at all… I was hoping it would improve his focus/ attention, speech (still NV) and fine motor (pen holding etc.)

Thanks @carriebradshawwithlessshoes
This is helpful to know

We also have fine motor and focus issues here

Oh to have a magic wand to help our children

I know this thread is a little old but my DC is just starting sensory integration therapy, they've been assessed positive (retained) in 3 areas. I just wondered if any more of you had had therapy and whether it proved beneficial.

I haven't explored it as yet... we have a sensory integration plan that we are working to and we've seen some impact of that although always hard to know during development.

Like a pp said I'm not sure my ds would cooperate as I think the exercises are very specific with repetition but it may be something we consider in future.

We are considering trying it with our DD, the behavioural optometrist we saw has recommended we do it.

DD gets very anxious and upset easily and has quite low self esteem, so i am hoping it will help with her focus, reading and writing.

The biggest issue I've had is getting my son to do the exercises regularly enough, they are repetitive, fiddly and complex (thus tricky if you have a kid who has a short attention span and is strongly on their own agenda and prone to non-compliance...)

We tested my son at 6. He's now 10. My guess is all three retained reflexes he had are still there but to a lesser degree than when he was younger. The ATNR has almost gone. The Moro is still there. We actually worked with an OT for 2 years and saw big gains from that.

Basically it's still a work in progress....

Thanks all for your updates, we're only 3 weeks in, so very early days but had a session at home as holidays and it was fascinating to see the impact from some of activities they're doing, we haven't started any exercises at home yet but will be soon. I think we're starting with work on the Moro then STNR then the Spinal galant. The OT is suggesting a referral to a behavioural optometrist for vision therapy. @fightingthedogforadonut did you go through NHS or private for behaviour optometrist?

We went private for behavioural optometrist, couldn't find anyone on the nhs

@Wowzel can I ask where you went? Probably not in the same area as us but still thought it was worth asking. I've approached one and we've been given a questionnaire to complete first. I'm still unsure whether to try x

I sent you a pm!

We have been seeing someone for retained reflexes and also the safe and sound protocol. I've learnt that this is a way better approach than sensory integration because it's bottom up, so basically helps the brain build what it's missed out on and make better connections. Our son's emotional regulation and attention in class is so astoundingly improved. We see a neurodevelopmental therapist in West Sussex/Surrey who does both and uses rhythmic movement and is very experienced - let me know if you need contact details. I also see her for me, and it's been so interesting. She does group courses for parents on reflexes and nervous system work too. Wish the NHS was enlightened enough to provide this!

It is interesting, we decided to go for it! Watching the assessment was interesting to watch, we start treatment in 2 weeks... I will try and update when I have more of a view how it's going, for now I just thought I'd regret not trying it, I'm not sure he'd have been able to follow the exercises if we'd started earlier.

Fingers crossed 😀

I've started this with my 8 year old daughter in February, fast forward to July and the reflexes are starting to inhibit. I have done the brushing exercises twice a day, every day without fail, and have seen changes in her since. I believe I also have retained reflexes so intend to address this in myself once my daughters has finished.

@Tudorfan thank you for the reply! Can I ask the differences you have noticed? It's early days and we've started slowly but ds had quite a strong reaction (he became quite irritable and very resistant to touch when he is normally quite tactile and sensory seeking)

My daughter has severely restricted eating, which the NHS has diagnosed as Arfid. Since starting the brushing, the textures she will eat have significantly improved. Her sleep is much better, finally sleeps through the night instead of waking 2 -3 times per night. More sociable/outgoing with other children, improved handwriting and more control over her emotional regulation.

Hi! We are coming to the end of our neurodevelopment journey after a long few years!

My daughter has always struggled with her handwriting and spelling. We were recommended a dyslexia screening which we did however although she showed dyslexic traits, she wasn’t academically challenged enough to give a diagnosis for dyslexia.

The lady conducting the test recommended we saw a behavioural Opthemologist as she had concerns about my daughter’s eye movements. We saw him and he acknowledged there was some unusual eye movements. He treated her but also recommended we saw The Key Clinic and a have her primitive reflexes assessed.

our major concerns were spelling, handwriting, motor issues such as running, coordination, emotional resilience just to name a few.

After the initial telephone consultation we were invited to have a face to face assessment. It transpired that our daughter (9 years old at the time) had retained 7 of her primitive reflexes, the majority by 75%

We understood that the process would be a commitment but we couldn’t not do it. We have had 7 months (so far) of exercises every day. There have been odd days where they have been missed but 90% of days we have done the exercises given. By about month 5 we had noticed a difference in her coordination and emotional resilience (small things that would upset her before just didn’t bother her anymore). We then started to notice an improvement in her spelling and at sports day, she actually placed in a number of races. She ran!!! Something she’s never been able to do. we noticed she was getting higher scores in her dance competitions and was becoming more flexible.

we have just had our month 7 appointment and we only have the last little bits to go. We still need to improve handwriting but the reflex connected to that is still retained. We have been advised that if this is still an issue then they will offer us some exercises through their OT who specialises in handwriting.

we have one last session and then the final assessment. It has been a long and incredibly expensive 9 months but it’s been so so worth it! We travel to Newbury every four weeks and the clinic there is beautiful!

if anyone has any questions then please feel free to ask!

We started our reflex integration journey yesterday! I'm trying to keep an open mind. My son is 6 and ticks ALL the boxes for needing the treatment.

@Tudorfan Have you only been using the brushing to integrate? Do you mind me asking how many times you stroke for each session? For now it's the only treatment we've been given to try and have started at 5 each time and are meant to build it up in two weeks time.

@Carolinejayne Would you be able to explain a little what the behavioural ophthalmologist did and if it made a difference? I've discovered my son can't track at all on his right side or up or down. No wonder he resists reading.

Yes only brushing, on our third pattern of brushing. Varied between 20 - 40 strokes each time.