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?

Can I ask how much the ongoing treatments are costing?

I know it's expensive and not available on the nhs

My daughters is £140.00 with appointments every 6 - 8 weeks

Hi @ArielleB - I would be interested in your neurodevelopmental therapists details please as we also live in Surrey/ West Sussex area.

Our OT identified retained reflexes but is more sensory focussed

Hi @Ralphjeffers the BO initial assessment was very extensive. Lots of tracking using computers and cameras along with lots of physical exams of her eyes. She then has had multiple prescriptions to try and train and strengthen her eyes.

This is really amazing, so interesting the impacts you've seen physically, academically and emotionally. Was it a gradual change and were there any regressions while you were doing it? We are on week 3 now and it's been a bit rocky but it is the end of the school year too so that might not help!

Thank you! Yes it was very gradual. We started in January but only noticed the first major breakthrough in May when my daughter hurt herself at a party. Usually she would have had a melt down and panicked but instead she stayed very calm and level headed about the situation. It was incredible to watch!

she was very emotional for the first few weeks of doing the exercises. She would just spontaneously burst out crying like it was a release.

over the last 6 months we have a significant increase in her dance competition scores, with particular focus on her flexibility and coordination. She also placed in two running races at sports day this year which was unbelievable!!! She’s always tailed behind at the end, every single year so to come second and third was just incredible!!

we haven’t seen any regressions but we can tell when she hasn’t done her exercises. We will go to the appointment and she hasn’t progressed and they can spot that without me even having to say that there have been missed days.

it is incredibly tiring but so worth it! X

@Carolinejayne thank you for giving us some hope, it’s great to hear of successes.

@Bobobab how are you getting on?

we are exclusively brushing and saw a huge difference the first week. Answering direct questions, chattier, calmer, happier and kinder to his sibling. He even fully joined in at a birthday party, rather than the usual aimless running around.
Week 2 feels a lot like we’ve gone back to usual. Although it has also coincided with the end of term. Change is hard for him. I do notice he’s still talking more and seems to sometimes become lucid quicker after a manic/dysregulated episode.
I’m trying to not put too much expectation into this process, but having seen how lovely it was when our son was regulated, it’s hard.

Looking forward to hearing more about your journeys.

We are still early in the process, something is definitely happening just not sure of its a good thing yet! DS is really awakened if that makes sense, lpts of energy,quite emotional (highs and lows) and more socially aware (talking all the time about parties and asking if he's going, asking all children he sees their names, generally wanting to play with anyone and everyone)

It is really challenging tbh... perhaps made worse by the school holidays too, but only been a month we'll see how it goes 😀! I'm trying the same @Ralphjeffers really trying not to anticipate any outcome and live in the moment which I'm terrible at!

This is so interesting @Bobobab thanks for the update. I found an osteopath in south Manchester that offers this stuff too so wondering whether to try it even though I’m very sceptical 😅

I hope the hard parts of the changes you’re seeing settle down soon. Summer holidays is a weird time anyway!

Hey guys, I’ve been wondering how you’ve all been getting on? @Bobobab did you stick with it?
I have to say we have paused our integration journey. The summer holidays and a new sibling meant that behaviour became so challenging, that even just the minute or so of brushing was insurmountable. We’ve had to resort to adhd medication, which has been transformative for our son. It’s like he’s been unlocked. I would still like to try later down the line. It’s a hard one. I want to believe so much in the process, but our challenges were so significant, we felt we couldn’t deprive our child of immediate relief in order to try an alternative therapy that may not work for him.

Hey @Ralphjeffers still going and seeing enough things to keep going too! The most obvious things are improved Coordination and he just seems more mature and empathetic. Coordination wise its really obvious in sport, swimming has really improved and the playground, he even just looks more comfortable when he's just sitting and playing. Along with that, however, he is much more aware, and he's struggling with separation anxiety... we had a bereavement, and he's really struggled since with the idea that people close to him might not always be there. Hard to be sure but I genuinely don't think 6 months ago he would have dwelled on it at all, I guess this is a life lesson we all need to go throug and I can't protect him but will be glad when he's feeling more reassured.

The real highs and lows emotionally have passed and I'm genuinely excited to see the changes now... one really funny one is he's singing all the time, it's like parts of his brain are switching on if that makes any sense.

Interestingly I didn't think brushing was great for my ds's regulation, I noticed an improvement when I stopped and just did the exercises, he's really sensitive to stuff, I'm yet to find an omega supplement that doesn't send him loopy!

Amazing news about medication we still may go there at least for school (once we get a diagnosis). I hope everything is going well with your new arrival too, my ds really struggled with that change too so definitely think working on reflexes at the same time is a lot... for you as well x

Anyone here accessing this therapy in Didsbury through an osteopath? Holland Osteopathy?

Joining this thread as we are just starting our journey. Had our first appointment today and started the brushing this evening. No observable changes so far but after reading this thread and others I am feeling a mixture of apprehension and excitement for the next few months…

Hi @ArielleB i wanted to ask how your experience has been with your provider since your post? I’m in Sussex and have discovered her work and really interested in what she offers

@ArielleB please could you kindly share the details of who you see with me?

Also, do you think it's too early to look into this for my son who is 21 months old? I'm not sure if he's too young to do the exercises...

What we're experiencing with him is

• limited speech (around 8 words including 'mama', 'dada', 'nana', 'no', 'moon', and 'what's that'), although seems to understand everything
• a number of sensory sensitivities (doesn't like wearing certain clothes, gets very upset with any sort of blanket over him even in winter, hates have his hands and face cleaned but then on the flip side, can't bear getting any dirt on his hands if we're outside)
• waking constantly through the night (no exaggeration but he fights going to sleep like nothing I've ever seen before and has never had a full night's sleep, which also means I haven't slept for nearly 2 years - we cosleep now as it's the only way I can manage the endless wakings)
• restlessness and hyperactivity during the day, literally zooms around for hours without stopping and will only sit for max a few minutes
• frequent daily tantrums/meltdowns which I know can be normal for this age but his tend to be very extreme and it can be impossible to calm him for hours sometimes
• can sit on chairs but often falls off, this also seems to be linked to his inability to stay still! So he'll be sitting on a little chair and then wriggling, rotating around and pushing his feet against things so the chair tips back
• CMPA and eczema

I do sometimes query ASD as this runs in our family, but there are certain things that make me think it may not be - he's very responsive to other people's emotions, loves cuddles, responds to smiles, always wants to play together (his favourite things are reading, pushing his pram around and emptying the dishwasher together!), good eye contact. Likewise ADHD as again this is very common in my family, myself included. And also enlarged adenoids as he mouth breathed from an early age and that may explain the brief but frequent wakings through the night. But now I've just come across retained reflexes and am wondering if it could be linked to this. Essentially, I can't shake the feeling that there is something beyond "usual" toddler behaviour and just want to help him above all else!

I'm so sorry for the waffle, but it's 4am, and I'm feeling desperate following his latest waking episode. I realise all of this could be completely normal and some symptoms could be amplified by something transient like teething, but would hugely appreciate any advice!!

Sounds very similar to my son at that age, although I didn’t have the sleep issues. His speech actually accelerated dramatically at around 2 years and was then ahead of his peers by age 3.

we just started seeing Bob Allen a few months ago, and already he seems more ‘present’ in himself if that makes sense. Non has a long waiting list so might be worth reaching out and getting added now even if treatment might be tricky at this age.

Hello all, if anyone who has seen the practitioner in Romiley would mind PM-ing me that would be much appreciated. Thank you

Our son has retained reflexes but the exercises we were told to do are incredible repetitive (boring)?and DS would not cooperate with them. We did have 2 years of OT Sensory integration treatment (had to go private because my NHS trust wouldn’t provide it 😡) That actually made quite a bit of difference.

Thank you, would you mind sharing where you went for the OT sensory integration please? Thank you