Hypermobility

[Melpf]

One of my 1 year old twins has been diagnosed with hypermobility. Has anyone had experience of this? She's too little to know how badly she has it and whether it's a symptom of something else but I'm still panicking!! Thanks.

I have 3 DC's with hypermobility, in varying degrees of severity. If you have any questions, ask away!

It can range from mild - just being a bit more bendy / flexible than usual, to severe - with multi systemic involvement. Did they give you a measurement on the Beighton scale? Tbh, she might well be too young for that, if she's not standing and walking yet. The Beighton scale measurement (usually given as either a single figure number, or ?/9 as a score) will give you a guide as to the likely severity of her symptoms.

The doc said not to worry at this stage as she's too little. I have to stand her up lots to try and strengthen her muscles. Did all your DCs need intervention to get them walking? Do kids with this condition continue to need treatment as they grow up? Thanks

DD was referred to physio as not walking by 18 months. Typically she got up and walked the day before her appointment at 20 months! When we saw the physio she said she was a bit hypermobile and that was probably why it tok her longer, and to make sure her shoes were supportive around the ankle and encourage her to be active, climb etc. She didn't feel we needed any further appointments, and it wasn't until we got home and I googled hypermobility that I realised it could be quite a major problem for some children and I should have asked more questions!

Anyway, she has just turned 4 and no real problems - a little behind her peers in terms of physical development, e.g how much she can jump etc, but nothing we would worry about... fingers crossed.

BTW, one thing to look out for -at 3 year check, the HV noticed she was sitting on the floor in a 'W' (knees bent back either side) and said that was because she was hypermobile, and we should encourage her not to do that as bad for hips.

My DC1 was diagnosed at a later age, so hit crawling and walking milestones a bit later than peers, but walking at 16mo (and cruising for many months before) well within "normal" range.

No real problematic symptoms until starting school when abnormal tiredness and aching knees resulted from extra physical activity in school sports. This was when we got the referral and diagnosis.

Physio has been useful (luckily paid for by insurance) but TBH we could have got by fine without it. It's all about developing a strong core and taking stress off limbs and other joints, so a bit of knowledge of Pilates is a good start, and the exercises are similar. Physio helped to identify that one side is weaker than the other so we can target exercises. Also good to stretch out muscles at the end of the day, my DC1 is old enough to do this without supervision or help.

We try to avoid unnecessary physical exertion. No after-school clubs and we don't walk to school. Physio advised against gymnastics and ballet in particular. DC2 is still young enough to be in a pushchair but can walk, so DC1 sometimes uses the pushchair if we are out and about and the tiredness/aching hits.

The other thing to watch for is a lazy gut resulting in constipation. Physio says these often go together, so we try to keep fibre/veg/fruit consumption high and that's been fine.

I give Calpol or Nurofen Kids for joint pain.

Good luck. I also know people who have never had any issues, others who only ever had issues in pregnancy, which is quite some time away for your DD!

Oh and yes to avoiding the w-sitting and making sure they sit on their bottoms/crossed legs rather than kneeling on chairs too.

DD walked at 18 months with the help of Physio exercises. She is the least affected. She had a slight speech delay, due to poor oral motor control, and was late developing a dominant hand, which affected her writing for a while.

DS2 is my worst affected, basically he is as bad as you can be with it, in a Wheelchair till 5yo, took his first step at 3y7mo, it affects his respiratory system (but that was very apparent by the time he was just 5 months old, so don't let that worry you if your DD hasn't had issues by 1yo!), it affects his bowel motility, it affected his speech, he had a severe speech delay as his oral motor control was affected, he has kyphosis in his spine, plantar fasciitis, the list goes on and on. he is now 10yo and sees Physio, OT, orthopaedic consultant, respiratory consultant, orthotics for orthotic boots and orthotic insoles, rheumatologist, speech therapist...I've probably missed some!

His issues were VERY apparent at birth though, as he was so severely affected that he was unable to suck, and had to be syringe/spoon fed for quite a while.

So PLEASE don't let his issues worry you, if your DD was that severe, you would know that already!!

DS3 is moderately affected - though he walked at 14 months, with the help of the Physio exercises I'm now proficient in . He has Speech delay and requires orthotic inserts, but he runs, climbs, and is generally into everything as much as your next nearly 3yo!

It really is a curve as to how badly affected they are. You might find that there's no real issue other than a natural aptitude for gymnastics (something like 70% of Olympic gymnasts have mild-moderate hypermobility!)

I'm hyper mobile too, and until 3 years ago, I still sat on my legs and until DS2 was born, I still sat on the floor in a 'aw' position too! All the while making sure the DC's didn't do it!

Suffering for all those years of doing it though, with bursitis in my hips.

I think handwriting can be a problem, due to inability to grip a pencil or pen? My DC's friend has to either have chunky pencils or those grips that slide onto pencils.

My dd was diagnosed at 9 months having been referred by her Hv for having her thumbs tucked into her palms like a new born and being unable to do the pincher grip, eg pick up raisins using her thumb and forefinger. So I go on Google and get myself in a right state thinking she'll be in a wheelchair, need special boots, be unable to carry a baby, be in constant pain etc.

thankfully dd is like most others with hypermobility. She's very bendy and often gets her legs and arms into positions you would think were impossible / painful. She trips more than average I guess but crawled and walked only a little later than 'normal'. Generally though she's a very healthy 3 1/2 year old who loves ballet, gymnastics and swimming.

Since my dd was diagnosed my ds, 6, has also been. He only seems to have it in his hands / wrists though. He finds handwriting differcult, along with doing up zips / buttons on clothes etc. I suspect once dd is older she'll find the same things hard.

They are both seen by an ot who has been fab and provided pencil grips, writing boards, hand straps etc. ds refuses to use them now. His handwriting is untidy but readable. I'm hoping when he's older he may be allowed to use a laptop to do exams etc. try not to worry and read to many horror stories.

My DS2 is the worst case scenario you read about on Google. I don't wish to scare anyone with that though, it's VERY unusual to be so severely affected.

I have 3 other DC's, one mild, one moderate, and one who doesn't have Hypermobility.

DS2 is likely to be dxd with a more severe form called Ehlers-Danloss syndrome when he sees the Rheumy tomorrow, so not just 'bog-standard' hypermobility IYSWIM.

Best for pencils and pens of any sort, after 15 years of extensive product testing (I.e. Buying everything and discarding anything that didn't help) are Stabilo.

The Stabilo S'moove pens and pencils are excellent, and can be bought for right or left handers. Also their triangular colouring pencils and pens.

A writing slope can be invaluable too, as it relieves strain on the wrists when writing.

In the majority of cases, it only requires minimal adjustments to things like writing implements.

If their ankles are affected, then hi-top style boots that support the ankles.

And NO TRAMPOLINES. It's the single worst exercise for hyper mobile DC's!

Dribbling can be an issue, for longer than normal. Due to poor oral motor control.

After 3yo, if your hypermobile DC is still very dribbly (requiring a change of top in the day for drool reasons), then there is a patch that can be used to help that.

Just waiting for 3yo DS3's patch prescription. Doesn't bother HIM in the slightest, yet, but he gets rashes under his chin, and I worry about bullying, it's easy to solve, so not really an issue.

One of the best things you can do to start helping this, and toning the oral muscles, is to get them blowing raspberries! Then sucking and blowing through a straw. This all helps to prevent or ease any speech delays, too.

It does depend on how severe the hypermobility is. I have hypermobility and walked earlier than most, but my hypermobility isn't very severe, I do have very bad knees (probably from sitting in the W!) and had a few issues in pregnancy with my joints. And anxiety attacks - bizarrely there is a relationship between both, noone knows why!

Dr Google never seems like a good idea, but in this instance it might be a good idea to look it up and arm yourself with a load of questions for your next appointment.

DD10 Os Hypermobile, and has just been given a diagnosis of Hyper Mobility Syndrome, as she has other issues also - mainly to do with her bowels and pain.

She has insoles for her shoes and has been told she will need to be careful with her footwear for the rest of her life. She is also in the middle of some fairly intensive physio, and will be joining a physio group for hypermobile kids once she has got through the 1-1 stuff.

Physio recommends short periods of exercises, mostly things to build her core strength, and to support her knees.

have just managed to persuade GP to refer ds to physio for hypermobility. She was v reluctant as she thinks that at 4 it is too young. She did admit that he is v flexible. My main concern is his handwriting due to his thumbs bending backwards when he holds a pen and although he always picks up things with his right hand he then swaps them over. She asked if he sits in a funny way to which I said no, but have now realised that she thinks crossed legged is normal as opposed to the W shape which is how we sit. Also he still dribbles and has some speech delay. I had already googled to establish that his two hernias might be linked. Interested to hear more about the patches - are they a barrier on the chin or is it medicated. I don't know that ds is that bad as his tops tend not to get wet but he does have sore chin due to dribbling. Might ring speech therapy to get him seen again too.

Another family of hypermobiles here:

I have very moderate problems, slightly weaker wrist and finger joints, so prefer not to write by hand but that's about it

dd has had severe chronic pain, difficulty in walking, incontinence, severe panic attacks, lots of falls even as a pre-teen; as a baby struggled to breastfeed and was late in walking

ds was a little late in walking, very clumsy, struggled to learn to write, brief period of pain around age 8, but seems fine now

They are medicated patches, they go behind an ear (they're quite small). It just replaces some hormone or something (see how technical I am ) and it helps to slow down the drooling.

For handwriting, a writing slope and triangular pencils, Stabilo S'moove pens or pencils and a good posture with feet on the floor will help.

I am worrying for physio referral for my 6t old who has hypermobility and walks on his ties all the time. I am feeling bad now that I didn't insist before. It has only really become a problem now in Y1 as he is finding it hard to grip a pencil and write. He has always toe walked, sits on knees or w sits. His hands and feet seem most affected to me. He can bend his fingers and thumbs right back to rest against his hand, so the pencil keeps pinging out, and when he was born his toes all pointed in different directions. He also had 90% tounge tie when born, which was snipped, and has a slight heart murmur which worried me slightly now I know there can be vascular involvement. He really feels the cold, has to wear thermals every day, and I wonder if that is something to so with it as well. I am also very flexible and had terrible spd with all pregnancies so suspect it is probably inherited.

He is a very happy and healthy boy otherwise and I am hoping he will just need physio.

My ds has tongue tie too! I think I read somewhere that low thyroid levels can also be associated with hypermobility so might be worth asking about that if he is always cold.

The patches sound interesting, if I get any further than a physio I will enquire about them.I think my GP would probably laugh me out of her office as she scibbled a referral for munchhousen by proxy, but then I don't have much faith in her after she told me that he might grow out of an inguinal hernia - oh whoops maybe that should be he needs urgent surgey ideally within two weeks.

I just phoned the GP and he's been referred to the paed team and paed physio - so at least he's in the system. Someone on a thread here mentioned Ehlers-Danlos syndrome type 3 - which from my google research seems to be what they are calling hypermobility syndrome now. But there can be some cross over with the other types which can be more involved. My GP also mentioned needing to rule out Marfan syndrome - but checked his palette which she said was normal. She took me very seriously and didn't think it inappropriate at all to refer him so see a different GP if you need to! She also said he should really have been assessed at Reception age (last year) so 4, coming up for 5 doesn't seem too young to me.

I am also worried and feel bad I didn't get him in the system earlier!

Sorry Couthy - see you already mentioned Ehlers-Danloss syndrome

The anxiety thing worried me too as also seems to fit. I have 3 dc and ds2 who is being assessed is definitely more "sensitive" for a better word that his brothers and seems to take things to heart much more. I know anxiety apparently can go along with (some) typed of hypermobility.