Dd1's paed appointment, muscle tone, hypermobile, no reflexes in legs?

[Marne]

Hi, dd1 had a paed appointment today (after waiting almost 2 years), as many of you know she already has a dx of AS but we were worried about her physical develepment and muscle tone. Paed checked her over and did some simple ecxersizes (standing on one leg ect..), when he checked her reflexes he could'nt get any response from her legs (arms were fine), he said he wasn't sure if it was a problem or if dd1 was just not relaxed enough. He said she has fluctulating (sp) muscle tone, one minute she's stiff (walks stiff) and the next she is really floppy and bendy (maybe because of her hypermobilty?).

Should i be worried about her reflexes? what does it meen?

He has referred her to physio and OT in hope they can do some excersizes to improve muscle tone.

Thanks nightcat. thank heavens DGS will eat meat. Every 6 weeks I have a major cooking session and steam all vedge (potato, sweet potato, parsnip, carrot,butternut squash,cauliflower) and do beef and chicken, plus cream cheese and butter (DGS is v. skinny). I also do a spagetti bolognaise thing with tomato and garlic and beef and cheese. He came up in hives with one white fish (dont know which one!) so a bit scared to try fish again
Looking a a four page chart ive downloaded he does well on the savoury front but as for fruit - no luck at all - even bananas. I will look into trying him with tahini or any ground nuts. He has taken to muller little stars fruit flavours so maybe we can sneak pureed fruit into them. Hope chocolate buttons have minerals in them! It is a nightmare when you have a toddler who is not a foodie and you worry about deficiencies. He needs all the help he can get after a rugh start. He only weight 10.5 K at 2.5 yo!

Dd1 doesn't eat meat and no veg, she lives on pizza and blueberies which is why i cant cut out gluten (she could not live without pizza), she will eat the odd fish finger (must be of the finest quality, no dark bits of fish or it gets rejected).

sneezecakesmum - do you think the skinnyness is also down to muscle tone? DD is really skinny and can't keep trousers or skirts up. She eats like a horse provided that it is fat and sugar (veg is another matter entirely!). Have you tried your DGS on smoked mackeral? DD will eat that quite happily!

Don't worry about banana, they are mostly carbs so pure energy but not as much vits/minerals as other fruit or veg. I only use banana when making pancakes (whizz up 1/2 banana into the batter). Pureed fruit is a great idea, apples + cinamon, yummmy :)
BTW zinc forms part of lots of enzymes and hormones inc growth and it improves sense of taste.

dd2 isn't a skinny and has the same muscle tone issues (well, she's not plump, but she's solid - always has been, despite feeding issues) she's the same as my other two in that respect tbh, it's more genetics and metabolism than tone in particular i think. they have the exact same body shape - just hers doesn't move/ work the same and doesn't get fed as much! that said, i do think it's different/ more difficult to maintain weight gain for prems. fortunately dd2 was a whacking 9lb at birth.

marne - i think there are gluten free pizza dough recipes that are ok - i'm sure i came across one in the natasha campbell-mcbride book, i'll try and dig it out. (we're planning on looking at diet for ds1, not dd2)

Smashing- I'm not convinced its purely the muscle tone issue. Yes CP children need more calories as they need more energy to produce the same results eg walking as NT kids. But DGS, although he uses more energy to manouvre toys etc (sometimes little beads of sweat on little forehead!) he's not using energy running, jumping,toddling etc, so I think it evens out. He was only 4.5 lbs at birth (37 weeks) but the main reason he's not chunky is he has the same rubbish appetite as his mum and her brother had at that age. I have photos of the same skinny little legs and bods so mainly genetics imo!!
DD is avoiding all fish now after the hives episode - she's a bit neurotic about allergies even though I've told her most kids outgrow these minor allergies - never listens!
Zinc is going to be pushed now as he needs to grow. Not up (he is in the middle of the height chart) but out (on bottom line - and thats an improvement!
Madwoman...honestly you don't know how lucky you are weight wise - stupid flaming paed terrifies DD with talk of PEG feeding (DD refuses to go now and sends her DH!!)

Marne. Loads of exercises to improve muscle tone. Look into Brainwave as they do a wonderful in depth assessment of your child - 2 days, 3 workers there (inc OT and Physio) and usually only one family. We learnt so much about muscle tone, affects etc. Downside it costs £525 but well worth it to us.

dd2 had a slt that specialised in feeding from birth (she was tube fed initially). i have to say that without our lovely lovely slt i have no doubt that she'd still be tube fed. i spent pretty much the first two years bawling because i couldn't feed her. lovely slt was very sensible. refused aspiration testing because we knew she was aspirating but was convinced that she/ we could get her through it. she was right. we also went to a feeding/ communication group weekly run by the same slt - i have to say our care package when we left hospital was top notch.

we had a dietician. once. i went for the first appointment and refused to ever go back.

DGS dietician said feed breakfast, then a mid morning snack, lunch, and afternoon snack, tea and a pre bed snack!! DD fell off the chair laughing Now DD just gets her to sign for the procal powder, high energy gloop, and so on and doesnt bother with the chit chat.

Senior SLT assessed him a couple of weeks ago and was pleasantly surprised by his oral control (considering he's near toothless!) swallowing etc. no aspirating, nothing. So why doesn't he speak?? DD thinks he's using those brain cells to learn to control his movements..sounds wacky enough to be true. I'm convinced he will speak eventually, so wierd he said more words 18 months ago than he does now. Is it because we are so good at interpreting his indicators that he doesnt need to speak? What a confusing condition CP is!

as you know we were told dd2 wouldn't speak, so we got started early on owl (to look for non verbal cues - really good if you are doing the 'interpreting' and meeting his every desire!), borrowed a big mac, and started makaton. i do think makaton was the 'communication' catalyst (for speech too). her first team would just not recognise her at all now!

she's in the school choir ffs

if dgs is anything like dd2, he'll wait just until the point everyone has given up trying to work out whether x is possible, and have written it off as 'no', and then will start demonstrating that x is indeed something that he would quite like to practise, thanks.

Sorry ... whats o.w.l and a big mac? We have tried a few makaton signs like look and sleep but he makes no effort to copy. 18 mo ago he was waving bye bye... but not anymore. I really think he's worked out pretty quick its a lot of effort for very little reward! But he can take all the animals out of his feely bag and put them in again, recognises a lot of them and picks them out, counted 1-10 moving along DDs outstretched fingers, so why not speak anything apart from gen (again) ungy (mummy) iggle and dg (dog)?

Going to look into maketon symbols again and other picture symbols (drink) etc and see where it goes.

I hope you are right MWITA about him doing stuff when we least expect it - only good stuff though. Don't think the speech part of his brain was affected and doesnt even dribble much anymore, expecially good as he's no teeth to stop spit dribbling out!

PS I keep swearing in front of him in the hope he'll copy bet it backfires on me and daddy will get cross!!

owl is observe, wait, listen. we were given charts and stuff from slt. it's amethod of ensuring that you are giving the child time to respond (in any way, not necessarily speech, can be as simple as a movement or attention shift, just a way of noting responses to communication attempts, and obviously goes from a movement to speech response in degrees from what i can remember. i found it really helpful because even when i thought dd2 hadn't heard/ understood what i said, using owl reminded me to at that point count to ten slowly in my head to give her extra response time - so for processing, and then organising her body to respond, and processing a response. it was also useful to tell others (childminders nursery etc) that she needed to be given extra processing and response time.

a big mac (you can little macs too ) is a big push/ whack button that you can pre-record a message on, and the child can push/whack it to play the recorded message. you can record anything. so it's just a very early communication tool in the simplest sense. can help to teach the response bit in communication - so turn taking etc.

if it helps, dd2 ignored the makaton for several months, and then gradually started signing (it was frankly rubbish as her fine motor was grim) but you caould get the gist of it, and it was encouraging as it was a definite communication.

her facial muscles were quite compromised too i think, so she had a really blank expression for a long time (she's never going to need botox ) and didn't smile or laugh for yonks, so we found it really difficult to spot a response/ any understanding at all at first. which of course leads you off down all sorts of sld paths, which were completely wrong...

then she developed a beavis and butthead hurr hurr, and was off.

Re Riding
Marne if you speak to your friend about using their horses the belt thing Madwoman refers is called a lunging roller. For max benefit you need to ride bareback (on a blanket or gel pad) using the handles on the roller to hold on if need be. Then you need one person to lead the horse and a walker on either side. So very labour intensive. You may also want someone to back ride (sit on the horse behind her) with her to start with. Once she is confident sitting you want her doing lots of twisting and stretching exercises. Hope that helps, let me know if you have any more questions

oo, you learn something every day!
thanks isw! and they were using it bareback on a blanket - so now i'm pleased that they are doing the right thing!

We have a big red mac Just recorded a nursery rhyme on it which
DGS is happy to push for us to do the hand movements, but seems just cause and effect rather than speech related.

Is Makaton any use when he refuses to make hand movements eg bye-bye? He understands everything we say. Do you want beddy byes = sad mouth, puppy face and whimpering... which we know means 'i'm knackered take me to bed!' He is facially very expressive, does eye pointing etc
.

I think maybe we are neglecting the independence areas so maybe we need to laminate pictures (drinks, toys) etc to get him to point to what he wants...maybe that will lead to speech....all food for thought.

Also will try to get him enrolled in donkey riding as it is so good for the trunk. Marne's DD can get RDA, but DGS is too young yet.
Marne..DGS has really improved his trunk strength with the ball exercises. You can buy a sort of chair with a giant ball in the middle, not specifically SN but purely for posture. you are constantly rebalancing yourself on it and working the trunk and balance.

they are good for cause and effect, but have seen them used as a pre-cursor to speech/ communication too. i knew a little boy who had two which he used for yes and no for a while. (he had some limited arm movement but not any real head control). depends what you put on them i guess!

that's the next step though, you are right, giving choices and 'insisting' on some form of communicated choice. it will be easy enough if he's eye pointing, but might lead to more - definitely need to move onto 'do you want x or y', dgs.

dd2 had a communication book for a while which hung on her chair and went to nursery etc. a bit about her and favourite things etc, and a common choices bit at the back with pictures, so that if she went into meltdown they could at least attempt to work out what she wanted using the pics in the book

with makaton, it was singing that made dd2 interested she could join in with songs and sign. trying to do old macdonald in the car looking in the rear view mirror to find out what animal was next was a bit hairy, but it was a definite stimulus for her to be able to join in and 'lead' instead of being a passive recipient... that started at the communication group. we had a bag for each song, with different items in, so for old macdonald there were laminated pictures of different animals, as well as plastic toy animals. depending on developmental stage, the kids whose 'turn' it was to choose either got a free hand in the bag, or two pics etc. then the choice was reinforced with both sign and speech 'oo, a pig!' and the sign. so to start with dd2 would be given two pictures and would have to gesture towards one of them. (children who didn't respond were given time, and then one of the oicture would be touched onto their hand and the same process - 'oo, a cow!' and the sign etc.)

you've probably been through all this. sorry. just really wanted to say it was singing, really, that got dd2 started with makaton. but she did ignore all signs for months before she tried it.

marne sorry have not read all the pots here but has your paed done a genetic test for Myotonic dystrophy it is one of the most common Muscle disorders but is often misdiagnosed. The condition is very varied and can affect any muscle group within the body. Sorry to interupt other conversations but I allways pick my ears up when muscle problems arrise. It would also go with some of the other things you have mentioned.

MWITA. We are taking on board the choices thing. tbh SLT has been saying this for ages. Offered DGS vtech piano thing or book today..he went one to the other and settled on the piano! You could see he was having difficulty making up his mind - a real ditherer like me!

DGS is starting nursery in sept one am a week, so we are seriously going to have to look at a book with pics etc as you describe, just because he shows no interest now doesn't mean we shouldnt try just never enough hours in the day. Don't worry we havent been through all this yet too busy with all the physio stuff. I can see a little job looming on the horizon for me!!!

Marne. What ineed says could be a valid point. lots of CP can be picked up following difficult births, but there are many other reasons, but hopefully it is just a mild case whatever it is. DGS is doing brilliantly since we concentrated on building up his trunk/core muscles. His arm movements really are improving and he may even be reducing the annoying arching back whenever he initiates a movement. That would be amazing for his development. Maybe if he doesnt have to concentrate so hard on physical things he may speak to us. DD is set to disolve in tears when he finally (x) talks!