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Baby with hypermobility

(44 Posts)
HopAndEggRoll Mon 25-Mar-13 19:04:19

Hi, I have another thread about ds1 and the issues we face with him under my normal nn HugAndRoll. This thread is about my ds2.

He has always been quite floppy in the joints but we didn't really think anything of it. He's 11 months old on Sunday and still not weight bearing on his legs at all and we noticed his feet would be in very strange angles etc so he had a physiotherapy appointment today.

The physiotherapist checked him over and observed him and said he is hypermobile throughout his body, particularly shoulders, wrists, ankles and hips.

We were told he will more than likely walk but it would take a lot of extra work and time. She is seeing him again in 4 weeks, we have exercises to do at home, she is referring him to a paediatrian and will visit his nursery to demonstrate the exercises.

I was just wondering if anyone has experience of this and if you have any tips/advice etc.

rabbitstew Wed 27-Mar-13 11:53:02

HopAndEggRoll - at 15 months, my ds1 still couldn't even roll over. He could sit but only if put in a sitting position as he couldn't get from lying to sitting. He also couldn't crawl, bottom shuffle, pull to stand or cruise and if he got tired sitting up, would fling himself over backwards and lie on his back. Nevertheless, within 2 months of starting physio, he was learning how to crawl and could walk (with piedro boots) just before he was 2, so it's amazing how much difference and how quickly appropriate physio can make - provided the child is willing to engage in an awful lot of effort! Countless hours were involved... and he will have to remain pretty active all his life to prevent the muscles weakening and failing to support and protect his joints. The biggest thing, really, is getting the balance right - recognising how far you can push yourself and when to stop so as not to cause long term damage or pain, but to be able to lead a full and enjoyable life.

CouthySaysEatChoccyEggs Wed 27-Mar-13 13:16:51

To get DS2 to crawl, I used to HOLD him on the floor, in a crawling position, and put a favourite toy just out of reach, so he reached for it. Then I literally moved his arms and legs so that he 'crawled' towards it, with me making him do the movements. It took MONTHS AND MONTHS of this, but due to retained muscle memory (same way soldiers get so quick at taking a shot with their guns!), eventually he mastered it.

Apparently if you repeat the same action 500 times, your muscle 'retains' a memory of it, and it becomes more natural. I swear it was more like 5,000 times for DS2, but he got there in the end.

Also, I used a kids football like an except use ball for him (he was too small for a proper one).

I'd sit him on it, and hold him up as he 'wobbled'. Strengthened his core. I would also lay him face down with his tummy on it, and sort of 'roll' him backwards and forwards over it.

I did spend HOURS every damn day for over 2 years trying to get him to first crawl, then walk.

For sitting up, I had a Galt dinosaur/crocodile cushion (was never certain which it was!) that literally was long enough to go from his left leg, round his back, and right round to his right leg, that I used to 'prop' him up on, and try to get him to reach for toys.

It's all paid off in the end though - and while his physical development is still VERY delayed, he CAN run, walk and climb. He has developed kyphosis due to the Hypermobility, so I would urge any of you with younger hypermobile DC's to keep an eye on the alignment if their spine, and for any unusual curvature of the spine as they DO learn to stand and walk. Especially after growth spurts.

It took hours and hours of perseverance mind you, I had to be very committed - I was told he'd NEVER walk by the Physio & OT!

I will say that he takes a backward slide in his physical abilities whenever he has a growth spurt too, and apparently that is quite common in hypermobile DC's.

CouthySaysEatChoccyEggs Wed 27-Mar-13 13:17:47

Except use = exercise. Bloody autocorrect!

CouthySaysEatChoccyEggs Wed 27-Mar-13 13:18:49

I'll try to link to the cushion I used (I no longer have it, I passed it on to a friend whose DC is also hypermobile due to Down's.

CouthySaysEatChoccyEggs Wed 27-Mar-13 13:19:35

Sorry, pressed post too soon!

I will try to link to it later when I fire up the lappy, am on my phone right now!

rabbitstew Wed 27-Mar-13 14:27:04

Yes, ds1 learnt to crawl by being maneouvred, too! He learnt all his gross motor movements by rote, having his body manouevred into the right positions to start with so that he could feel what he was supposed to be doing (and it was hours worth of work a day). Luckily, he has a phenomenal memory... The physio was particularly helpful in helping me understand why he found some things so difficult - eg when he was older, I couldn't understand why he apparently found it uncomfortable to spin his wrist round so that his hand was facing palm up when I tried to teach him how to put on his watch. Apparently, that action was referring back to his loose shoulders and pulling them out of joint, or something like that... I also learnt how difficult it actually is for a child to transfer weight from one hip to the other when they pull to stand if they have hypermobile hips and weak muscles around the hip joint. There were all sorts of specific muscles that were weak because the lack of joint stability prevented him from using them, and because the muscles were weak through lack of use, the joints were increasingly unstable, and because some muscles were overworking to compensate for the muscles that weren't being used, he was developing inappropriate patterns of movement which caused fatigue or discomfort... so it was an unvirtuous circle that needed to be broken!

Pollaidh Wed 27-Mar-13 15:14:40

The ball we use for a mini exercise ball for core strength is something like this http://www.yogamatters.com/product/714/prpiball/exer-soft-ball.html although I got mine from TK Max I think. It's less stable than a football and you can bounce on it too. My child sits on it and wobbles. You can also use a 'sit fit' cushion as a mini wobble board.

The fact that children are being diagnosed young these days gives them the best possible chance of a health and strength. I wasn't diagnosed until early twenties by which time I was (1) convinced I was a bit of a wimp, (2) mocked for always being injured, even by my own family (3) had done a lot of severe damage by taking up sports to 'prove myself', including of all the stupid things, rugby and fell running.

CouthySaysEatChoccyEggs Wed 27-Mar-13 15:56:20

I think that mine were dxd as young as they were due to family history - my mother was dxd at 9yo, I was dxd at 7yo, my Dbro was dxd at 4yo.

My DD was dxd at around 2.5yo, but my DS2 took the biscuit - they had no choice but to dx him at 7mo, because he'd already had numerous dislocations. DS3 I noticed it at 16 WEEKS old, was pooh-poohed by the Physio, then he was finally dxd at 22mo. But as I had already spitted it, I started working with him right away, at 16 weeks!

HopAndEggRoll Wed 27-Mar-13 18:38:20

You are all wonderful thank you smile

CouthySaysEatChoccyEggs Wed 27-Mar-13 18:46:55

Dinosaur cushion link I hope

It's the older version - the newer one doesn't go as far 'round' them, but there are a few of the older green ones on Gumtree / EBay / Preloved. The newer, shorter ones are purple, so you need to look for the green one.

CouthySaysEatChoccyEggs Wed 27-Mar-13 18:47:57

Yep, linky works.

HTH.

CouthySaysEatChoccyEggs Wed 27-Mar-13 18:49:03

Pollaidh - I let a little bit of the air out if the kids football first, to make it slightly softer.

HopAndEggRoll Wed 27-Mar-13 20:14:42

Thank you, his birthday is next month and people can get that for him

I'm feeling guilty. I can bend my fingers back 90 degrees but other than that I'm the least flexible person ever. I thought it was normal until dh said its not. Why can't that be the extent of ds2 ay?

Pollaidh Wed 27-Mar-13 20:22:27

Hop, I completely understand, I felt awful that I'd passed it on. You've done the best you can by getting it diagnosed early and I'm sure you'll now do everything to make sure he reaches his full potential.

May be worth mentioning here that there are 2 pregnancy complications associated with HM:
1. SPD, which is rather obvious.
2. PPH and also tearing, due to weak connective tissues.
It's not guaranteed thankfully but there's an increased chance and it certainly has happened consistently in my extended family.

HopAndEggRoll Wed 27-Mar-13 20:58:59

I tore quite badly both times. I'm not going to have anymore children and my two are boys which is good. I'm sure he will be fine but I can't help thinking that he may not be. It doesn't help that my "support" network all just say he's fine which doesn't help as they are being really dismissive which makes me not want to talk about it. Makes me worry they won't take his physio seriously too.

CouthySaysEatChoccyEggs Thu 28-Mar-13 01:59:12

I tore all 4 times, and have the 'cigarette paper' scarring from my stretchmarks.

My stretchmarks were so bad that they opened up and bled for the last 3 months every pg.

I am very hypermobile myself - but at that time, though my mother and I had it, my Dbro wasn't dxd at the point I fell pg with DD, as he is 10 years younger than me.

I score an 8/9 on the Beighton scale, DD scores 7/9, DS2 scores 9/9 (hence the severity), DS3 my guess is that he would score around 6-7/9.

It's a shame, but until DS2 was born, we had no idea that if one parent is hypermobile, their DC's each have a 50% chance of being hypermobile.

To compound matters, DS2 & DS3 have a different father to the older two DC's - and he is ALSO hypermobile, though not as severely. He scores 6/9 on the Beighton scale.

Apparently, DS2 & DS3 had a 75% chance of being hypermobile, and when it is inherited from both parents, there is a much higher possibility of an increased severity.

Poor DS2 had no chance!

CouthySaysEatChoccyEggs Thu 28-Mar-13 02:00:46

On the positive side, he enjoyed his first hydrotherapy session today, he worked hard and was very tired out afterwards!

And he gets his new orthotic inserts next month.

HopAndEggRoll Thu 28-Mar-13 22:41:27

Aww bless him. Im hoping that ds2 looks so bad because he's still a baby. Not burying my head in the sand and know we will have to work hard but still taking each day as it comes and not worrying too much (now) until the paed appointment.

HopAndEggRoll Sat 30-Mar-13 11:25:07

Hi. Does anyone have any tips to get ds to keep his legs together during tummy time or do I have to hold them together? His hips go in the box splits position and he fights against me pushing them back together.

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