Hypermobility?

[Fuschia]

Does anyone have a child with this? I have it myself and it runs in the family, now turns out DS1 has it and it has much more of an effect on him at school than I would have imagined...

[Pickle]

I'm hypermobile, primarily fingers/hands/wrists but also to an extent my feet and ankles. My sister suffers (for her it's her ankle joints that cause the most problems) and my brother's elbows are an extreme case.

I haven't been hugely affected, it's something I'm used to dealing with. For me joint pain and inflammation is the thing I have to watch for, but that said the thing I do the most of (flute playing) doesn't seem to bother me too much. My biggest issue at school was learning to hold my pen properly - teachers were at their wits end and eventually gave up, as my thumbs "dislocate" when I'm trying to do it the conventional way. That said, my way works, and I always got the neatest handwriting awards at primary school!

My sisters ankles are really bad, associated ligament problems mean sprains are a very common thing for her, and it really limits her sport, which she loves.

When C was being assessed at Kings for being a late walker they asked whether either me or Mr Pickle were hypermobile, as he is showing signs (and I tend to agree more now due to his wonky ankles).

In what way is he being affected at school?

[Fuschia]

Problems with handwriting mostly though he is very clumsy, can't sit still, general coordination difficulties. Turns out his fingers are very flexible and not strong, and he looks his elbows when he writes, hence his odd pen holding technique...

I have eak ankles Pippa, and dislocated one and have done a lotof hsyio over the years.

[littleEDfamily]

Yep, I supposedly have this too. And it's led to more problems than I would have imagined (but I have none of the problems Fuschia or Pickle mention). Was born with hip dysplasia, which seems to be associated with we 'hypermobile' types. As far as I can gather the 'disorder' and its quite broad effects are not exactly well understood. I could rabbit on for hours, but I would probably bore myself and others.

[ae]

I have this - or at least, it's big brother - Ehlers Danlos Syndrome (Hypermobility type).

I had loads of problems when I was a kid (mostly my legs/shoulders) and wasn't diagnosed until I was 22. Since then I've done as much as I possibly can to keep a level of fitness that keeps things suitably taut but it's difficult.

When I was diagnosed, I had a lot of support from the UK Ehlers Danlos group. You might find that they're able to give you some advice, or point you in the direction of a specialist that can help. I believe from some people I knew back then that you can get finger-splints or similar things to help with the problems you describe that your DS is having.

They're at http://www.ehlers-danlos.org/

I think there's also an EDS/hypermobility specialist at one of the South London hospitals - either Kings or St Thomases.

Hope you manage to find something that helps.

[darlin']

I'm interested in knowing more about this. What signs did/do your babies first have that show they may have it?

In the last month or so my baby (10 months) has been doing the splits when she sits down and moves around, sometimes causing her to fall flat over onto her back because it means she's not propping herself up in a balanced way when sitting.

It has freaked us out to see how flexible she is and I've been wondering if it could be something more.

She was very mobile in the womb, going from breech to transverse and back to cephalic all within a morning. I eventually had to have her by c-s at 41 weeks because she just wouldn't stop moving and therefore couldn't engage. Does that sound like an indicator for hyperflexibility/ mobility do you think?

[EDmummy]

Count me and my youngest with this as well. Unfortunately, I didn't find out until I was an adult and at an arthritis clinic. It is also the cause of my terrible back problems.

Youngest has only just been diagnosed and I completely relate to everything you are saying about the affects at school, Fuschia. Youngest is working with an Occupational Therapist at Sunshine House and we have been given some good strategies. We have bought him a disc-n-sit and it was recommended he does gymnastics, swimming (both of which he already does) and Tae Kwon Do to develop core strength and other muscles. Yoga and Pilates are also recommended. You might think about chatting to Kelly Thursfield the SENCO at Heber, if you haven't already done so, as there are quite a few kids with the condition at the school.

@darlin', not sure about the moving bit but in hindsight there were some early developmental indicators that we were not aware of. One of the questions asked by the OT was about his early development but, despite the odds, he crawled and walked early. Definitely have a chat with your GP to get baby checked out.

[Fuschia]

Thank you everybody

[littleEDfamily]

Gosh, ae, thanks for that link. I had never heard of Ehlers Danlos Syndrome. It does sound like there is a big spectrum of symptoms associated with the disorder. Freaked me out a bit!

For me as a kid, in hindsight, the indicators were obv the hip dysplasia, but also it seems scoliosis, and that fact that I could bend my thumbs back to touch my wrist, and make a clapping noise with only one hand :-). Never put them all together as a disorder, and on the plus side, it meant I had a naturally good golf swing!!! It honestly never really bothered me until I ended up with a few problems post-partum and in my second pregnancy suffered pretty badly from pelvic instability.

ae- have I understood correctly that, unlike the other types, they are yet to identify the actual defective gene related to hypermobility type?

[darlin']

Thanks ED Mummy. I think I will speak to GP and hope they don't think I'm being crazy. I know I can touch thumbs to wrist and have over curved back so maybe it's a similar thing. Interesting how common it seems.

[Fuschia]

http://www.hypermobility.org/beighton.php

[darlin']

Thanks for that link Fuschia. Some of those other signs are really interesting eg thin, elastic skin and easy bruising. Will look into this more. Hope your son gets the help he needs. OT should be really hot on this I imagine.

[Fuschia]

Luckily he doesn't seem to have the painful aspects, just the clumsiness, weakness, stiffness..

[denny]

I was just diagnosed with joint hypermobility syndrome formally know as EDS type 3. I had no problems till my first pregnancy when I got spd and although I was told it would go after the birth it actually got worse affecting more joints than just my pelvis. I didn't find out what was wring with me till I went to a podiatrist because of ankle and foot pain. I also go on the hypermobility forum. I understand that spd in pregnancy is common with EDS. I suffer alot of pain with it and it can be very frustrating as on the outside you look fine. Luckily not everyone suffers pain from being hypermobile but I would say find out as much as you can about how to prevent problems in the future.

[denny]

If littleEDfamily or anyone wants to pm me about this feel free I would not be bored!

[Fuschia]

Saw my sister and my niece today, boy does my niece have weird joints, splayed up fingers like a mole.

[EDmummy]

Just found this interesting article on hypermobility. Wish I had known some of this whilst I was growing up as it explains a lot! Now will use as useful reference when we get DD2's appointment for the physio.

[SLAV]

Hi!

I am familiar with these symptoms.

This is the connective tissue disease.

It is called ?Joints Hypermobility?.

The joints sore, they become crunchy, soft tissue may ache?

The ligaments are stretched.

Cartilage tissue wears out fast.

I made a lot videos on this subject.

I published treatment regimens.

There is information regarding alternative medicine preparations as well.

I got a whole site dedicated to this issue.

I?ll tell what can help you!

This is my story of recovery -

https://youtu.be/Hep_xytXRec

Interesting research in Russia -

https://youtu.be/YinpMACgUdk

https://youtu.be/ZUM673eblRc