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Original poster

Retained Reflexes - any "side effects"

79 replies

nightcat · 02/10/2011 17:54

Have any of you who are doing RR therapy noticed any "side effects" in terms of increase of tics or any other symptoms?

We are only at the outset and I might be barking up a wrong tree.. and it could be some deficiency or even some bug still in the system.. or could it be the scenario again that it needs to get worse before it can get better like it was with GAPS at the beginning?

OP posts:

IndigoBell · 02/10/2011 18:02

DS and DD didn't have any side effects.

But I remember other people definitely saying they had. Especially when doing things like getting rid of the moro reflex.

I always look at side effects as proof that the therapy is doing something working :)

How's the GAPS diet going?

Original poster

nightcat · 02/10/2011 18:49

thank you Indigo :)
I am so new to this that not sure which reflex we are working on it's the one where they keep putting fingers in the mouth when stressed (does it make sense??)

I can see he is becoming brighter generally, more open to ideas and makes more mature comments.

I am not consistent on probiotics, so will try and get that back into a routine, it could even be that might help. Made a big pot of stock today.

Guess what, one dr we see has recently been asking about the diet with what looked like a genuine interest :)

OP posts:

Becaroooo · 02/10/2011 19:30

NC Havent had anything with ds1 yet and he has been doing RR since March.

(and his moro has gone!!)

mumgoingcrazy · 02/10/2011 20:13

Hello, yes we have had a few side effects, and our therapist assures me this is a sign that things are working and to ride the storm. In time they go and she's right, things have got better. We have been doing RR for a year now and still have a way to go I think but it's all worth it.

Original poster

nightcat · 02/10/2011 21:26

thank you becaaroo & mum, I won't worry too much then :)

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blueShark · 02/10/2011 22:45

Lots of tics and anxiety at the beginning but most if not all gone now and we have been doing since jan so hang in there, it only get better and as the others have said a sign that something is changing.

Becaroooo - so pleased you managed to get rid of the Moro, that sits highest in the hieararchy, which exercises did you if you don't kind sharing? Ds still has it 50 percent

Original poster

nightcat · 02/10/2011 23:13

oh, thank you Blue Shark :) I feel reassured now, will sit it out

OP posts:

Becaroooo · 03/10/2011 10:15

Hi blueshark

Ds1 scored a maximum of 4 for moro (assessments were scored from 0-4. 0 = no retained reflex to 4 = 100% retained primitive reflex) back in March.

At our last appt in August it had gone

His anxitey levels have certainly dropped - he is trying new things (always been an issue) and does not react liek he used to to loud noises/unexpected noises and events (before RRT he had a very exagerated fear paralysis response...grimace, intake of breath, hands and arms up to chest, crying etc)

Also he did a course of AIT in May which has helped his noise sensivity so much! He now doesnt jump out of his skin when a motorcycle goes past!!!

Wish we could do the GAPS diet, but its just too hard atm (although we have cut out milk and he is on a probiotic every day) He wont eat the GF stuff at all

Ds1 has been doing "the astronaut" since March and has done several other exercises in the neonate position - all to do with getting his balance and vestibular problems sorted. Tbh we havent really done any specific exercises for the moro, but its gone all the same!!

blueShark · 03/10/2011 21:37

thanks so much Becaroooo. DS scored 100% in Jan and its now down to 50%, lots of improvement but still some way to go.

Can you please have a go at explaining the astronaut? I know it can be hard to put it into words...

Becaroooo · 03/10/2011 21:53

erm...... I'll try!!!

Basically, ds1 sits on a swivel chair (like an office chair) and crosses his legs and arm across his body - right arm and leg over left. He closes his eyes (we use a blindfold) and tucks his chin to his chest. He is turned VERY slowly clockwise for 60 seconds back to the original position and then sits still for 15 seconds, then anti-clockwise for 60 seconds and then still for 15 seconds again.

Thats it.

I am sure this is the exercise that has really helped ds1 with his balance and vestibular issues and his moro. We have been to INPP now every 6/8 weeks since the beginning of March and they have kept him on this exercise the whole time.

Becaroooo · 03/10/2011 21:54

...really good your ds's moro has gone down by 50% though blueshark!! so amazing isnt it??? Such simple exercises!!! We think we will be doing RRT til Feb next year....

Original poster

nightcat · 03/10/2011 22:46

Impressive stuff Becaroo, it's pretty awesome when simple exercises can make such a big difference!

As for GAPS, even if you can't go all the way, try cutting out wheat from 1-2 meals in a day, I am sure it will help. And don't look for gf substitutes, just use foods that don't have gluten, which imo is the main problem that in turn leads to other issues.

OP posts:

Becaroooo · 04/10/2011 07:54

Thats a good point NC will try to cut it our rather than substitute...have to say the GF bread is pretty manky!!!

IndigoBell · 04/10/2011 09:41

Becaroo - Def try to cut wheat out.

We've switched to GF pasta, which seems to taste the same as normal pasta.

But we've just totally cut bread out of the kids diet. DS takes a bunch of snacks to school for lunch, and DD takes pasta.

And we've switched to GF free biscuits, and have had no complaints about them :)

blueShark · 05/10/2011 10:01

thanks for the good explanation Becaroooo.

We were given that same exercise by BIBIC only without the crossed legs and hands and I have been doing it but DS wouldnt close his eyes and by reading your description now the BIBIC advice 'eyes must be closed' rings my ears so that must be the trick in the exercise to work completely.

blueShark · 05/10/2011 10:32

nightcat - I just read that the worst symptoms can be exhibited when the moro is going so dont stress out as you will be celebrating success soon :)

Becaroooo · 05/10/2011 11:23

blueshark We used a blindfold at first but ds1 doesnt need it now

oodlesofdoodles · 05/10/2011 20:15

Sorry to hijack this thread, but how old are/were your dcs? My ds has been assessed by an INPP practitioner, but we were told he's too young and too unco-ordinated to manage the proper RRT exercises. We're going back in a week to get some preliminary exercises to work on.

Original poster

nightcat · 05/10/2011 20:49

blue shark :) thank you :)

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blueShark · 05/10/2011 21:03

Ds just turned 5 and we started rr in jan this year. Some children will be uncoordinated, well that's why rr will help them improve, you just have to be patient and find a wat to motivate your dc so that you get cooperation as all exercises are done in slow and controlled way.

Becaroooo · 06/10/2011 08:11

oodles ds1 was 7.8 when we started (we go to inpp too!) I am not sure we could have done it with ds1 at a much younger age tbh....

oodlesofdoodles · 06/10/2011 20:42

Thanks Becaroooo and blueShark. DS is nearly 5. Even if it doesn't have some profound effect I figure training him to be a bit less twitchy will help him look more normal.

Becaroooo · 07/10/2011 09:06

Ds1 now looks "normal" when riding his bike and swimming, instead of jerky and unco-ordinated His anxiety is also MUCH less now the moro is gone.

blueShark · 07/10/2011 21:10

Becaroooo - this is my first mn ....

4 days after the astronaut went to a bday party, a very crowded one and ds1 anxiety levels seemed to have dropped to almost zero.

Did he mind the nose and shouting kids running around and run to the toilet - no, he joined them happily
Did he beg me to go to the car and get home - no, he helped himself to food and saw him mumbling something to some kids and gave social smile to adults, not he usual laud one and actualy responded hello to someone
Sang happy birthday at the top of hs lungs
Did what all the other kids do and fr the very first time he didn't appear any different to the other 20 kids nor did he et the 'look' from an adult

I'm so ver the moon! All the social stories and prompts at parties I used previously were ard work for both of us, this one just went great with no preps....thanks a million!

blueShark · 07/10/2011 21:10

only f I typed correctly, lol!

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