not sure what the subject is... bit of everything? (long, sorry)

[madwomanintheattic]

so, some of you may remember i have dd2 (6) who has athetoid cp. i also post sometimes on continence threads as ds1 (almost 8) has day and night issues. he also has a few other quirks, which is where we're at today...

so the gp wants to refer him to the paed for general developmental assessment - initial consultation with gp (we recently moved o'seas) was for continence stuff, but gp after second appt thinks other stuff complicating, and thinks we won't sort out continence until, well, don't know what really, i guess that's next.

really just want to chuck some ideas round about ds 1. have been around pan-disability groups etc for several years, and realise that if ds1 fits anywhere, it's reasonably mild-end...

he's v bright, early talker, huge vocab, talented mathematician, just 'gets' stuff v easily. always gets by at school because they grasp how bright he is (he gets challenger/ differentiated stuff), but a constant refrain (4th year in) is that it is nigh on impossible to keep him on task with the class - he never finishes anything. can be a tad obsessive - think ds, tv, geology(?), last night wanted to discuss christian creationism v evolution etc... has some v odd sensory habits - often wipes or rubs food on his face before eating, has to get his fingers/ hands involved - so eats a banana by peeling it entirely and then wrapping his whole hand (palm) around it, before biting it. is generally a good eater but lately is cutting out a lot of stuff he claims now not to like.
a little socially awkward - will make odd noises/ squawk, and get literally manic if he is uncomfortable with a situation - have previously noted this but 'filed' it under a sort of shyness/ immaturity. fidgety, pulls faces, always has fingers in and around mouth, and is, actually, the most stubborn child in the history of the world. (lol, well, i think so anyway - although this has been said to me by a number of people)

gp is wondering adhd, but also thinks maybe spectrum somewhere... i have joked in the past that a good dose of ritalin might sort him out, but it really was mostly joking...

i'm oddly relieved that the gp thinks his continence issues might have deeper roots, but a bit sidelined that he genuinely thinks some sort of dx might be in order... he's been on oxybutinin, desmo and lactulose on and off for two years and has never been reliably dry.

anyone got any words of wisdom? the first time we saw the doc he spoke to me afterwards and suggested it may be some sort of reaction to dd2, (i have also wondered whther there is an element of subconscious attention seeking - not deliberate, but a sort of response to being middle kid followed up by needy kid lol) and had wondered whether cahms type involvement might help...

what does he sound like to you knowledgeable lot? i can normally spot sn at 100 paces lol, but his quirks are so familiar and not 'definite' enough that i haven't felt confident enough to ask for a paed opinion. 'twas only the gp suggesting today on the back of two consults and his continence. i'm slightly concerned about potential over-prescription of ritalin-type meds, but suspect that may be a small amount of denial creeping in...

golly, apols, that's huge - thanks to anyone who's got through it...

mmm difficult wihtout knowing (& obviously not being qualified at all ) but some of what you write does sound a little aspergers like maybe... sounds very sensory seeking.
Could the continence issues be sensory also, either the sensation gives him feedback he needs OR maybe he doesn't actually get teh sensation that he needs to go??
Just thoughts really.

I hope you get some more expert advice x

First let me say I am most definitely not an expert either and I am sure there are far more knowledgeable mumsnetters to answer your questions. However, ds2, who I might have previously described as being ADHD, went for an assessment with an OT fairly recently, to look at sensory processing, and it was hugely helpful. Among other things she found he had a retained newborn reflex (Spinal Galant) which can often lead to incontinence and fidgeting. We have some exercises to try to help with that and he's definitely been a lot better recently re daytime wetting (although he was also chronically constipated again in the past few weeks so that complicated matters).

I have a friend with a son with ASD and loads of his behaviour is like my ds2, but ds2 doesn't have an ASD diagnosis, just the sensory processing disorder. So I'm wondering - for myself as well as for you - if most of the behaviour can be explained by this?

Hi, I'm no expert either but wanted to throw in something re the continence - my DS had night time wetting every night until he was nearly 6. I realised after he went dry that it is related to stress levels - when he is stressed he returns to wetting the bed every night, when he is less stressed he is dry. I can see the change in his behaviour during the day when he is more stressed and this does tend to correlate with him bed wetting.

My DS has ASD and when he is stressed his behaviour deteriorates hugely he becomes incredibly stubborn, challenging, hyper, argumentative.

Just something else to maybe think about?

I am no expert but some of the issues you mention remind me of my son who is 10. Ds has LD and little language so is different in that respect but has many of the little quirks you mention and sensory issues constantly touches things and his face and has continance issues too with similar medications. I think the daytime continence issues relate to his poor body awareness combined with poor attention (puting off and forgeting his needs)and night time well I think he doesnt wake up until too late (the oxybutinin has helped reduce the number of accidents each night).
Any way my son has a dual Dx of ADHD and ASD with LD. Oddly ADHD medication ( which he has for 'working day' hours only) seems to assist with continance too as well as coordination and task abilty like pouring a drink (or indeed drinking it without spilling). This was not an expected therapeutic result but I suppose makes sense if his poor coordination and body awareness is in part attention related. Ds needs to be always occupied or moving - he cannot wait or cope with boredom!

MamanCochon - glad you had success with your retained reflexes exercises. friends son has aspergers, we found sensory trained OT and doing exercises for last 6 mnths for asymetrical neck tonic (?) and has also seen significant improvement. (also started therapeutic listening which has also been hlpeful- he has become far more talkative...)

based on 2 out of success rate i would say find a sensory trained OT to see if they can help.

MamanCouchon - what type of exersises do you do and have they helped with the issues? Ds scored very high for sid/ spd (and dcd too)and was given a sensory diet and a session in a SID room. I am uncertain if they help a great deal - although I think it has helped with sensory seeking issues and some of the oversensitivity. ( although if any one has a good way of stopping ds licking his hands I am at my wits end on this one)

thanks ladies - all very interesting stuff and lots to think about - i've been aware of his sensory stuff obv, but not convinced it was problematic enough to seek therapeutic involvement - i suppose i assumed once he realised the social implications he would learn to control the behaviour... although we (and the docs) also assumed that with the continence lol i don't think he has any retained reflexes, but i've always wondered whether we should try chiro or similar, so interesting to know there are a few other possibilities.

magso, i think the gp is aware of the adhd meds link with continence issues - it seemed to be his main reason for querying any underlying issues - that and the fact that ds1 was making fleeting eye contact, rocking backwards and forwards, kicking his legs, and chewing his fingers . tbh the continence link is the only reason we would try meds i think - at the mo none of his other quirks are serious enough to warrant intervention, although an ot assessment would be very interesting. we worked through dd2's sensory issues ourselves, so would be nice to see how our amateur attempts match up!

riven - ds1 doesn't have a brain injury, - dd2 def does. sorry for confusion, different kid

anyway, thanks again all. will update at some point with paed's opinion and anywhere else we end up!

hi magso like I said it's early days yet but these are ds2's exercises:
(1) 'figure of eight' where he holds a beanbag around pelvic level and makes a horizontal eight, swapping between hands at the centre (far easier to explain with a diagram lol);
(2) 'twitching tiger': hands and knees, with beanbags roughly on kidney area and has to twist round to see each beanbag in turn;
(3)'quiet tigers', still on hand and knees with beanbag on head this time, rocking gently backwards and forwards and then side to side. He finds this particularly hard to do and usually collapses.

(1) to (3) are specifically designed to deal with the spinal Galant reflex and ds2 found them really difficult initially but is now coping with the figures of eight at least.

Then brushing with a soft brush and fairly firm pressure, over his arms, legs and back. And joint compression.

supposedly we should do this little routine three times a day but that only happens on a good day, sometimes it's zero!

I think exercises 1 to 3 have helped with the continence but as I pointed out we also had chronic constipation to deal with so it all went to pot during that time. The brushing I think has been really helpful and he screams far less about me brushing his teeth etc. (but didn't stop the meltdowns when I had to do the whole bugbusting routine every three days because his brother had bloody lice). He still has many many strange behavioural quirks but the OT (rightly) thought we should try to concentrate on the continence first. I think we're going to be trying therapeutic listening soon though.

I agree that it would be interesting to see the difference between seeing a specialist and dealing with things at home, as a well-read parent. I always find it interesting to read lingle's posts on this subject. However I had not even heard of retained reflexes before we visited the OT so could not have dreamt that was one reason for ds2's incontinence.

Incidentally when ds2 was assessed by a developmental paed he behaved extremely well (loved the 1-1 attention ) and the report reiterates in several places that he only has 'mild' issues. However when the OT saw him, and looked at the info from us and school, he scored as having a 'definite difference' in three areas on the sensory profile, and she reckoned we had a lot to work on.

oh and ds1 does the hand licking thing too but we have tried to ignore it! We have enough on our hands due to ds2 so ds1 has not been through any assessments. However I have my suspicions that he might be on the high end of the autistic spectrum, just dealing with life fairly well at the moment. Dp would probably deny it strongly but he is an engineer himself...

Thank you so much Mamancochon - I will try anything! Sorry to not reply earlier. We do brushhing ( with soft sponges through to soft brushes) too but also find it difficult to do it as often as we should ( what with all the other things we have to do) but I do feel it has helped.
MWITA we tried medication because ds had very challenging behaviours and schools were really struggling (he is towards the severe end of both autistic and adhd spectrums) and medication is for ds helpful. He is more able and tuned in! I think the biggest supprise was the motor planning - he gets far less frustrated now although it was not instantanious - he had to learn to use the improvement - and accept physical limitations when his tablet wears off.

thanks magso

i had a small chuckle yesterday - the doc donned the santa suit for a christmas fair (total coincidence lol) - and my three were perched round him, with dd2 sitting on one knee and ds1 on the other. poor doc was trying not to let dd2 fall off, and trying to keep ds1 still enough to get the photo taken. a small opportunity for a peek at him without being the doc lol. i'd like to say it might have changed his mind, but it's funny how you start to notice more when someone else points stuff out. ds1 looked like an octopus on speed, arms and legs everywhere in constant motion,with some sort of tap dance thing happening with his feet...

i've never really noticed any sort of co-ordination issues, but last week coincidentally he has been told by one of the hockey coaches that if he can't learn to get everything together and stay upright, he won't be allowed to play...

i feel a bit like i have been wearing blinkers for a while... maybe a bit too much attention focused on dd2...