low muscle tone and community Paed appointment Weds - what to expect

[LargeLatte]

Ds2 (5yr) was referred by the school nurse to Community Paed as she has concerns about low muscle tone and developmental delay.

Any info on what to expect at this first appointment would be much appreciated.

Dh and I have concerns that ds constantly complains that he is tired if we have to walk any distance. Yesterday we went for a walk in a country park where there was play equipment and by the time we finished our walk he was too tired to play so I know he wasn't just trying it on when he kept saying he was tired. I am guessing this would be releated to the low muscle tone. DH is quite convinced that if we just made him exercise more all problems would be resolved. Am I just going to be really embarassed on Wednesday by the dr telling me I have let my son become a couch potato and he should be out exercising more and that's the cause of all his problems, or could it be something more.

Anyone been in a similar boat?

Ds has low muscle tone, hypermobility in his joints etc. I would ask Paed for a referral to an OT. I think its pretty common for children with low muscle tone etc, to tire easily.

Just making your ds exercise more, isnt the answer, although it is! OT can give you more specific exercises to do to try and build up muscle tone etc.

Thanks. I've been nervous to push him too much as he will often say that his legs and knees hurt. He can be very active and strong but only in short bursts.

it's a good idea to make some notes before you go, usually for a first appointment they will want a potted history of development from pregnancy onwards, so when he first rolled, sat, walked etc. Saves you sitting there umming and arring, desperately trying to remember like I have done in the past. Tiredness may well stem from the low tone but as claw says, specific exercise from a physio or OT will help.

Ds is the same, he gets aches in his legs and arms. He has poor posture stability, weak trunk muscles, weak shoulder girdle, poor body awareness and is always slumped over when he is supposed to sitting up or leaning on something when he should be standing. He also has difficulties with writing etc.

I think you are doing the right thing by not pushing him, let him rest when tired. Hopefully the Paed will refer you to OT, who can give you the correct exercise to help.

He already has a CPOC referal - should I persue the OT at the same time as CPOC? Or do one at a time. He has been under ENT since birth do already has Audio and ENT appointments every few months - bit worried about overloading him with all this. And does the Paed pass us off onto OT or will he stay under the Paed too?

The paed will remain the 'central' poc and will receive all of the ongoing reports from all specialists/ therapists to keep an overview. In theory they make the new referrals as required, but it sounds as though your paed is a bit crap if they haven't noticed the low tone.

Did ds2 have a particularly difficult birth/ neonatal period? As much info about developmental milestones as you can recall will be needed.

(I have absolutely no idea what CPOC stands for though... )

A paed hasn't seen him yet. From the beginning....elective 39 weeks C-section. He was under a Paed from birth until he was two for frequent infections, breathing problems, and some concerns about his boy bits. Under ENT from birth because of frequent ear perforations. Community nurse came into school last week, and wanted to make the referal to Community Paed for low muscle tone and developmental delay. I called her and asked for a referal to our local CPOC (I can't remember what it stands for but they deal with integrating the sense, reflexes and how that impacts of behaviour and development) unit as well because they deal with retained reflexes and from the reading I have done I thought this type of therapy would be beneficial for him, so I contacted the dr at the unit and she said if nurse referred him then she would take him- which is how we ended up with CPOC and Paed referals going on simultaneously.

All milestones reached at expected times, can use a scooter and ride a bike with stabilizers, thread beads, use Brio track - but can't hold pen properly, right letters, dress himself, drink from a cup.

He did learn to talk at 12 months then stopped for a year and restarted at 2.5 years but hoping that was just related to his hearing problems as he was quite ill during that time.

I hate hospital appointments (doesn't everyone) - just want to be prepared so I make the most of it and can see it as an opportunity for him rather than just a PITA.

My DS2 has low muscle tone and can't walk far without complaining.

Now I know why he always complains its made it easier for me :) I no longer expect him to walk too far.

He also has retained reflexes. And cant sit in a chair properly. Or ride a bike or learn to swim.

He has loads of temper tantrums and finds his emotions very hard to manage. His social skills are very poor.

We only saw an OT not a paed, and he was diagnosed with DCD (which is almost but not quite the same as dyspraxia)

Ah, ok.

In that case, the paed should in theory take 'control' and co-ordinate, but obv specialists will be in charge of their own areas.

Are you on the EDS hypermobility thread? It might be useful to have a read through, if not?

I would imagine physio and ot would be useful, and the paed will probably suggest assessments with both ( it might also be done under the CPOC umbrella too, I'm not really familiar with it, despite dd2 having rr and low tone!) ask paed for referral to both if it isn't suggested.

I gave up hating hospital appointments a long time ago. we used to have several appointments a week for years, so now when they come up I'm pretty excited as it's an opportunity to ensure that the best support is in place etc.

Thanks all - this is really useful information.

What is EDS hypermobility? Is that the same as low muscle tone?

Don't worry - found it and googled EDS - oh dear, wish I hadn't - think I will hide under a rock now until Weds is over with.

ds2 has several conditions that cause low muscle tone.
he does tire very easily as he ahs to put in so much more effort, not just with walking, but sitting, playing etc.
As well as the obvious physical stuff muscles low muscle tone can cause general fatigue just with daily activities.

Partly your dh is correct, excercise is the key, or can at least help. But little and often with regular rest breaks is far more effective than pushing him to the point of exhaustion.
Physio & OT will be able to fully assess and give you some proper guidance.

There are loads of reasons for low muscle tone. Dd2 has low tone and she has cerebral palsy lol. Dr google will only ever give you the worst picture.

Have you thought about dyspraxia type stuff as well?

The fact that Ds has made it this far without too much deviation from milestones etc is really good and indicates that his issues are probably quite mild, so don't worry! Sorry for causing alarm!

Don't worry - I am responsible for alarming myself. He has flat feet and has dislocated his thumb and jaw in the past so some of the symptoms list concerned me. Promise I won't look again.

It just doesn't seem like dyspraxia at all to me. He jumped with two feet off the ground younger than any other child I know, could use a trampoline and scooter at 3, thread buttons and beads at 2, stands on one leg to kick a ball. Anything that requires concentration he is fine at - however, every day activities like eating, walking without tripping over his own feet or ricocheting off doors was until recently near impossible. He is doing two sessions a week at school that alternates short bursts of activity between fine and gross motor skills, and his very lovely teacher has incorporated some 'crossing the mid line' exercises into the classes PE lessons and we are definitely seeing some progress. He has been feeding himself dinner, with a small fork without mess and put his own pyjamas on the other day - I know I can admit in this forum how proud I am of doing that even though he is 5.

I suppose what I am worried about it that although he is a little accident prone, I have been bumbling along quite happy in the belief that he is just a little behind due to lots of ill health while young, and now it looks to be more to it and I feel bad I've never looked into it before.

You guys are nice in here - I think I'll move in.

How bendy is he? My NT teenager while very able is also the one that cant walk through a door without bumping into it, cant eat a meal without making a mess.
He has hypermobility, this can also cause fatigue.

We are lovely.

Maybe read up a bit more on EDS type stuff (with an open mind) so that you can discuss possibilities with the doc on weds? At least to get it out in the open, so that you don't go home stewing about it... I'm a past master at avoiding the one question that needs answering....

Like everything else, low tone varies in severity.

School sound v on the ball. Is there any way you can get the lovely teacher to summarise current issues in school and what they have been doing? So write a quick summery that you can take with you? Sometimes it's good to turn up with a second opinion...

Summery? iPad-tastic.

Mad - Good idea - he has said he will do anything to help - but I was thinking that I would come out with questionnaires or that Paed would contact him directly. Didn't think to ask him to write a letter to take with me - now feel bad that I will only be giving him 24 hours notice - but worth an ask I guess.

And lol at the iPad - I always think that the message at the end of emails that says 'sent with my iPad' is actually code for - 'so if the spelling is crap its not me, blame the auto-correct'.

Lucy - he is not so much bendy as floppy iyswim - sliding off chairs, rolling around on the floor, slumped against a table. When he walks there is no real structure of rhythm to it - he kind of lurches forward and his feet slap the ground. I hate it when he runs - I cringe waiting for him to fall over. He has insoles for his flat feet and they def help with pain caused by walking and falling over. Going to buy him some new shoes tomorrow as he's had these a while and although they do still fit they have gone a bit floppy so aren't offering much support.

Are the insoles provided by orthotist, or off the shelf? Might be worth asking the paed for orthotic referral, as well...

Podiatrist out of a giant box - the insoles were in a box I mean, not the podiatrist.

summery, madwoman is just what today has been

I think you'd be safe enough googling the beighton/brighton score for hypermobility, it'll probably give you an idea of the kind of thing the paed should be checking. Have you thought about getting him boots rather than shoes, they offer a lot more support? Might be something worth asking the paed about. Kickers are often recommended but sports direct do a good line in stiff walking boots for kids now and at bargain prices too!

I may consider writing 'sent from my iPad' on all my emails now, sounds a great excuse

Right, looked up orthotics - had never heard of it before, thanks. will ask about that too and will ask teacher to do a quick note tomorrow.

Not here, ninja. Still snowing.

We had days where I threw my toys out of the cot and carried dd2 to the kickers shop.

She wore boots for 6 years .

ah, sorry madwoman, wishful think then maybe Dd3 currently has a combination of walking boots with insoles and piedros, seeing as it's taken them from the beginning of october till friday to get her a pair of piedros that fit. You'd think it was rocket science.