Retained Reflexes - update

[IndigoBell]

Ok, guys. You are not going to believe this.

As posted in an earlier thread we went to the Sound Learning Centre on Wednesday to start a retained reflex progam for DS. ( They call it a Neuro Development Program)

They tested him and he has major difficulties with all of his reflexes and his visual perception. They way they scored at 0% was no difficulties, 25% was significant difficulties, and over 50% was major difficulties. All of his reflexes were over 50% and some of them up to 100%! (Moro reflex was at 88%)

Anyway, they give us a program of exercises to do 10 minutes every day. Things like drinking and blowing through a straw. Touching your right knee with your left hand etc. Nothing that looked very special or even difficult for him to do.

Yesterday he sat down at this computer and typed a story for over an hour! And the story's really good!

This is from a kid who's made no progress in writing in the last 2 years, and is still working at the level of a 7 year old. He has never ever sat and concentrated for an hour - or written typed a long piece of work.

Co-incedence?????

He was also able to use a key to unlock the front door for the first time ever.

Spooky.

I will keep you posted...

Thanks guys, that helps, gives a better idea if it migth be useful.

Knew I could depend on the you!

so pleased with the results IndigoBell and everyone else that has attended the Sound Learning Centre.

I went for the open day just before Xmas and have pre booked DS for AIT and ND assessment and the AIT therapy for the Xmas coming so very pleased to hear positive comments, improvement in children and satisfied parents.

Thanks trouble useful links

All this makes very interesting reading but its obviously a complex subject.

Thank you Nicko I did read up on it a while ago and what you say about transitions makes sense. It is my DGS (2) who has CP. I'm sure physio said he didnt have the tonic neck reflex thing, but DD and I are a bit scared to ask as things are currently going well and feeling a bit more confident after a rocky year or so!
DGS can sit but needs placing in that position so not transitioning. His worse trick is going rigid and arching, then he relaxes into the right positon and is fine, but that throws him off balance! Not sure if this is a retained reflex.

He is more balance and coordination than spastic. DDs OT is sensory trained and has offered a sensory assessment so we may see what she says. We have seen transitioning positions in our CP book and will try to incorporate them into his daily routine.

have you got the nancy thingy one? (lost my copy) he sounds similar to dd2 - has he got specialist seating? we had a tumbleform and then a jenx giraffe - that backwards arching was much more common in the tumbleform than the giraffe, but it's quite a familiar movement on kids with cp. we found that sitting her with her hips well back (not sure if he would be steady enough with a breezi and a pommel?) helped enormously - anything that allowed a greater than 90 degree angle allowed that spasm to continue.

(not sure if that helps or is gobbledegook...)

sometimes it's an over-enthusiastic retained moro (does he panic and flail sometimes when he's laid on his back? bang stright back into emergency crucifix position?) and sometimes a bog-standard muscle spasm. (dd2 was dx spastic initially, but re-dx at 4 to athetoid, mostly low tone)

that's what i mean really - if you have run out of other things to work on, then this is a good thing to look at - but at two there is probably lots going on with physio and ot in terms of developing balance and mobility/ grasp etc. it's useful to keep an ear out for retained reflex suggestions, but lots of the physio exercises will be replicating those in these programmes anyway.

we saw the most developmental strides around 3. she is unrecognisable now

Nicko Sorry not replied earlier but working today (and tomorrow). OMG You must have met my DGS!. He was diagnosed as spastic quad at 7-8 months (comm paed) but the neurologist disagreed and could only detect tightness in lower legs and right wrist
Now just turned 2 we can place his legs in a tailor sit and unless he tries arching, he's not bothered and will stay proping. His arms are not tight at all unless he wants to do something, then its all rigid! His fingers sometimes do a little piano playing without the piano (pure athetoid) and he can be really lazy head and trunk wise.

To me, with his fluctuating tone, I think he will also be rediagnosed as athetoid, especially as, when she sees him the paed congratulates DD on her stretching exercises (about 15 mins a day so not excessive!)

We both feel (I am v involved with physio etc) he is on the verge of sitting, crawling (not walking) he can take his own weight and loves to stand with support. It feels as though he will do what your DD did and make big strides in the near future, and it is so reassuring to hear about a similar child. We feel he has spent the first 2 years loosening up!
He has got a monkey stander and a jenx junior chair. The chair is brilliant and prevents most of the arching, but he still manages to bob up and down. Fully understand the 90 degree angle and arching we are constantly hanging onto his hips to prevent this.

He only does a Moro at loud noises (hands out in the 'praise me' position and knees up! Laid on his back he is happy as larry and grabs is lazy right hand, knees up, and rolls on his front, where he will sometimes make a stab at crawling but not quite sure what to do with his right arm, so gets carpet burns on his chin (v. funny!)

The book we have is 'Teaching motor skills to children with CP' siegelinde martin - the most brilliant book (incidentally it shows transitioning)
I think what you say regarding retained reflexes makes sense, he is doing so well with the physio, ot, portage and hydro - and I guess that is enough to be getting on with as he needs to work on all areas!
Thanks again its so nice to hear from someone who found light at the end of the tunnel, we have been much more optomistic of late, so again thanks!

he sounds fab, sayit.

we taught dd2 to crawl using the stairs (really)

i propped her up on her knees with her hands a stair or two up (depending on size lol) and moved her hands and then her knees alternately up to the next level. it was better than doing it on the flat because she wasn't taking her full body weight on her hands iyswim? (dd2 refused point blank to use her right hand at all forever - v funny in physio as even when the physio put something on the far right of her body, she would lean all the way over with her left hand and get it ) a bit older, obviously.

anyway - light at the end of the tunnel indeed, she's fab. we still have a wheelchair for long distances and if she's having a really wobbly day, but she finally stopped using her walker at the end of yr r - she was using it for stability in the playground so she could run and play.

have you got a gym ball? brill for core strength exercises, and head control too on tummy...

Another vote for exercises for retained reflexes!

Friends son has aspergers.

we found a sensory trained OT based in Devon last year, and started exercises for retained reflexes, OT then suggested doing therapeutic listening as well (similar to the listening programme). Really good results from these 2 things - he is happier, more involved, and physically so much more coordinated.

They have now started bio med approach - cutting out casein and gluten, and taking various supplements. This has also been really good - you can nearly see the difference. Would really recommend this to anyone with ASC - have a look at www.treatingautism.co.uk/

Hi Nicko
I did think of using the stairs to climb for reciprocal movement but got this from DD and this from DGS! To me it seemed logical (idea just came to me) so will give it a go again! We have got gym ball and have used it for ever - it was DDs when pregnant, but not used so much lately. Will hoick it out again. SIL too tidy and puts things away upstairs! Used it every day before and excellent. He has a swing, for balance, a ride on hippo and a trike we push him around in. Balance is shocking but coming on slowly.

DGS wont use his right hand. It used to be fisted but now quite loose, also reaches across body onto right side! Why the right hand most of the time? Will never understand CP. I bet like us you thought there were never enough hours in the day to work on every area, but I say he's only got to learn to crawl, walk, talk etc once and not relearn these skills every day!
Cheers x

when dd2 was three, the ot and i pretty much gave up on dd2's right hand - she would use for propping, but that was about it.

typically, as soon as you say, 'right, that's the limit of function there', they go and start developing more purposeful movement. she's definitely a leftie, but will use both hands for lots more these days.

we had one of those static sit-in activity centres which was a life saver (like a walker but no wheels?) the physio hated it, but when i persuaded her to actually look, she was won over, and we actually donated it to the physio service when she grew out of it. we propped her up in it with rolled towels. (she had a stander as well from 12 mos) it just gave us another position that she could be put in to strengthen different bits, and allowed some weight bearing with a bit more freedom that the stander.

we spent blooming hours stroking the backs of her hands to get them to open at all, she was very tight to start with (both hands tucked up under her chin like a boxer - thumb in palm). now her hands are very loose lol. go figure. physio thinks it is very likely that the external tightness in the limbs was a symptom of very low core tone, and as core strength built up, the extremities became more functional (with the realisation that she'll always be weaker on the right, probably due to the pattern of brain damage). she can even write, bless her cotton socks, but will use a laptop increasingly as she needs more speed and legibility

it does seem endless - i agree. there's always something that needs working on and supporting and improving. he does sound as though he's doing brilliantly btw.

they said dd2 wouldn't talk, so we started makaton at about 18mos, but since threeish she's been catching up, and we can't keep her quiet now. she's a little dysarthric, but perfectly functional. she didn't smile at all until past 6 mos, but these days laughs like a drain. so many things we thought she would never do...

Indigo, I'm so happy this has worked for you. I am a behavioral/developmental optometrist in the US and we test all of our therapy patients for retained reflexes. So far only one has not had a problem. It is practically a given that if they have visual processing issues they have sensory and retained reflex issues too. I wish more therapy programs included this.

Hi Nicko. DD will eventually get to read all this but she's just come back from hols and having to work (part time) Sun and tomorrow. She will be thrilled that your DD has made such strides. We were working towards age 2, having read about neural plasticity, and getting a bit down thinking it would stop there, but your DD has demonstrated to us we still have plenty of time to work with DGS - relief!

What you say about limb tightness loosening up is so true. His limbs now are fairly loose but his initially straight back and neck have also gone weak. He held his head up around 6 weeks but physio said that was the tightness, and he eventually went all floppy! We can see now that he has to build up his core with muscles rather than spasticity. She said it was easier to work with loose muscles than tight ones, so all very promising.

He has got a jumperoo (no wheels) which he used to love but we stopped it when the stander arrived as physio as you say! We will try it again (if dad has not dismantled it) as we can now recognise good and bad body posture just to see his reaction.

We are in the process of another physio plan for our daily use after slacking off a bit in the summer, but we needed a break and so did he! DGS brain damage was in his basal ganglia as he was starved of oxygen at birth from placental abruption ( trauma!!) so his CP is now consistant with that. Bless him, he can say a few words but not massively clearly so we do expect a few speech problems but he has SALT and his understanding is very good. He has started to babble dadada recently and this week learned to blow raspberries, so a b sound is in there somewhere. Your DDs writing is amazing, we hadnt even thought that a possibility, but it shows you cant just write something off.

Both DD and I just have to find the energy to get back into a good routine again now we know there is still loads of progress to be made. Its mentally exhausting though, isnt it?!

was he full term sayit?
dd2 was born term with similar damage after birth hypoxia. if he was, it's likely that his long term dx will be athetoid tbh, and it's also quite likely that there will be no learning disabilities (other than those caused by physical disability).

re exhaustion - you do need to take time out periodically to recharge your batteries.

dd2 had enormous problems with feeding/ speech (she was ng fed to start with as the hypoxia/ damage meant that she had no suck or swallow reflex). her oromotor skills were rubbish tbh, so she had slt from birth. it sounds as though his speech is coming along fabulously, though.

if you ever want to know anything off board - use madwomanintheattic @ hotmail dot co dot uk (no spaces etc)

Hi nicko Yes DGS was officially term at 37 weeks but only 4 1/2 lbs as placental insufficiency. It gave up the ghost and abrupted and DD had a crash c-section. DGS needed resusitation, fitted on SCBU and was v poorly for 3 weeks. (Have a feeling you know exactly what we mean!) His sucking was fine though after that and breastfed beautifully (still does)! Smiled soon after getting out of hospital - relief I think! On the down side he had massive 24/7 colic for months. severe anaemia at 6 mo. vacant episodes for several months(second or two only) which stopped 14 months ago, almost too scared to say that - x fingers x. Not on charts for weight still (just under) (on it for height and got to have front top teeth removed enamel crumbled (lack of nutrients from rubbish placenta) under G.A.

I am sure he is mainly athetoid and no problem thinking things through but its been held back because of not exploring his environment. He can propel himself forward semi crawling but panics on his tummy, and he can move forward - but the light bulb just hasnt gone on yet for him to realise it!

His left arm and hand movement is very shaky still, so hopefully that will steady when we can help him with his core strength. SIL has put gym ball and jumperoo away so will have a word. I bought a rifton junior gait trainer on ebay to get him used to standing properly but really prefer him to crawl as I've read it is so important. Will make him a little harness to support arms and shoulders I think.

To get to where your DD is I think we've got another long hard year ahead of us and keep going with the physio. No matter what we'll keep going and find that enthusiasm, he deserves it after his rough start. He has an 'achievement book' with photos which gives us hope when its going so slowly as he has made big strides, when you're tired you forget how far theyve come.

I will get DD to do the hotmail thing too (Im rubbish on new stuff, and facebook . There's always a lot questions and google is too scary!
Cheers x

she was 40 weeks to the day (9lbs lol) and 5 weeks in scbu. very similar (loaded with phenobarbitone etc for szs but... touch wood... nothing since newborn period - a few absences here and there but not enough to medicate). she's always been pretty robust, despite the feeding difficulties (takes after her mother)

the crawling is important partly because of the retained reflexes thing as well - if you skip that stage, there are other skills that can be more difficult.

the achievement books sounds like a lovely idea too.

let me know if you think of anything you'd like to ask about dd2.

Will do nicko Nice to see you about at a reasonable time, early hours of the morning previously! Cant believe the similarities post birth, even the absenses! It was all sensory overload we think on an irritable brain) . Thought DGS had one today (thats how neurotic you get) but he was just falling asleep on the couch after a little trip out in his trike! . DD being a good weight must have stood her in good stead, I read that attaining a good weight is very beneficial. We would like to feed DGS like a Christmas turkey but he's having none of it!

lol, there's a really easy reason for that. we moved to canada with dh's job last year, so when it's early hours in the uk, it's 'just got the kids in bed' time here. so i'm not really nocturnal - just kicking back with a bit of light mn once the house is quiet! if it was really gone 4am i'd be snoring, i promise you.

dd2 was born in renfrewshire. my only nhs baby (the other two were born in germany and canada) - i do often wonder whether it would have been different anywhere else, but pointless thinking about it really.

does he have slt? i thought ours was quite mad when she suggested quavers, but quavers was the thing that made a real difference with her ability to deal with different textures. (we only worked out when she was gone 4 that she has no lateral movement of the tongue - so can't really move stuff around in her mouth. 'chewing' was really squashing stuff on the roof of her mouth. slt had been getting us to load food into the sides of her mouth for ages, but it was only that late that even the slt realised it was so essential.

i have to say that the lovely slt we had for the first two years kept me sane. for several months we had to feed her only at night, as her tone was too high to suck during the day (lower at night when she was more relaxed) so we literally dream-fed her for a lot of the first year, and continued until she was reliably managing some solids (late as ever). we were lucky enough to have a place at a local sn baby/ toddler group that was run by a slt, a physio and an sn hv from scbu discharge - so however crazy and paranoid you got, you knew you only had to wait a week to bounce it off a few people who could calm you down.

i still remember going to the group for the last time, when dd2 walked in herself with her walking frame, in a pretty dress, and how thrilled they all were. have you or dd managed to find a group locally? they can be few and far between, but are a godsend if you can dig one up.

Hi nicko What a nightmare you must have had with little DD and the feeding ! I actually have a recurrent nightmare where I have a baby but keep forgetting to feed it! DD was convinced social services would take DGS away and tube feed him because she couldn't get his weight on the chart! It must be a mum thing to be so obsessive about infant feeding. DGS can eat and I'm pretty sure his tongue moves laterally as today for lunch he had brocalli and stilton soup soaked into bread and butter, bits of bread and butter (noted him chewing with molars) and choc cup cake - small amount but surprised me. Might be another growth spurt? He does tend to swallow choc buttons whole tho!

DGS gets SLT who is very nice and gives us pointers to work on but its mainly his speech she concentrates on. Luckily the dietician supplies the procal powder and procal shots so DD gets as many calories in as possible. Lucky for you all the dd2 started off at a respectable weight, tho I bet it fell off with the feeding problems, how soul destroying is that?

Youre right, you get paranoid crazy, despairing and joyful - all in the space of a day - such a mixed bag of emotions. There is a fab SN nursery locally with physios from the hydro pool, plus loads of equipment. DD expects DGS to go there around 3 when (hopefully) more mobile, but just not ready yet as very tearful around stangers - but does soon settle down. I think when theyve had a brain insult moods can be a bit swingy to begin with and he is a real mummy's boy atm!

I too have dreams of DGS walking into the hospital with a bunch of flowers for the lovely consultant who helped save his life and walking out of the hydropool one day (sure he will but not for a while yet!)

My DD has 'spoken' to you before. She remembers 'madwoman' and was very buoyed up by your dd2 and how well she was doing. This week has been frantic - tomorrow she has physio, portage, and having a 24 hour ecg tape (for her not DGS) as she was getting palpitations. But most have gone now and she's getting CBT and sorting out exercise and diet, but it was probably caused by underlying anxiety from the last 2 years. but its going to get better! We will email you for sure as there are endless questions and we all need hints and tips on the next stage! Bet it gets cold in Canada, but hope you have learned to love ice hockey, we both used to watch it here!
cheers and goodnight?? (I think)

now you're making me hungry - i've been obsessing about soup for hours since someone mentioned leek soup earlier!

i've namechanged a bit - mostly because of the sn thing - it makes you a bit more memorable, and i have fairly unique circumstances lol! madwoman was my favourite. might still go back to it if i can persuade mn hq to let me have it again.

i had a similar health scare two years ago - but dizzy/ loss of vision spells (do get palpitations on and off but fairly convinced they are hormonal now...) and was stopped driving for the summer. all calmed down, but i think you are right, the stress does build up and you have to learn to take care of yourself as well. equally as important!

no snow here yet - but there is some forecast tomorrow night on high ground

DD is walking around with wires strapped to her chest . She has read through these posts and is quoting you already! (re core strength )

I'm sure after 2 or so years the stress gets most people - funnily enough I think it happens when things are going well and you don't have to be so hyper vigilent - all that tension inside just wants to come out. Your 'dos' sound stress related too, I think, so glad you are feeling OK now.

I bought DGS a small rifton gait trainer on ebay for £50 to help with the standing and the walking movement. Thought physio would get a bit jobsworth and not adjust it to him, but she just said, is this it - lets get him in it! I am sure sneezecake (DD) will post a proud moment as he is doing some lovely walking movements with just a bit of prompting he was so happy with himself! Still going to persevere with crawling because of all the benefits, but was thrilled with him!

Snow, after last winter here Aaarrrgghhh...
Cheers x

hope sneezecake gets back to normal asap,
speak soon x