Hyper mobility

[SouthWestmom]

So ds has been demonstrating his disgusting skill of creating 'wings' with his shoulder blades - essentially he can make them appear out of his back, so much so you can hold them. The others can't do this.
I started thinking.
The other day one of the kids was complaining about a weird finger thing the same ds was doing, which was clicking and dislocating his fingers.

He hates handwriting, cries, mains, sobs etc.

Is this hypermobility? He also sits oddly with legs the 'wrong' way.

How do they both rate on this scale?

www.ehlers-danlos.org/about-eds/getting-a-diagnosis/beighton-score/

Both DD and I have hypermobility as part of the above condition and DD got full marks. She is so hypermobile she could join Cirque de Soleil! I'm not as bendy, especially as I get older but for 55 I'm very flexible compared with other people my age.

Thank you, that's really useful. I will test him tonight!

Interesting that it stays with you - too late for a career change?

Hopefully it will give you some indication whether your ds has some hypermobility. You can just have a few hypermobile joints or it can be right throughout the body to the point of sending your CV off to Cirque Du Soleil.

A lot of people have hypermobility on its own and others have it as part of the syndrome in the link in my first message, which is what's in our family. It's a genetic thing passed down from one parent. Are any of the adults on either side of your families very bendy? In our case, my Mum and both my brothers and I have it as does DD. We don't know about DGD yet as she's too young to tell.

All the hand and elbow stuff, not the knees.

If that's both hands and arms then I make that 6 out of 9 so that's medium hypermobility by the look of it.

Sorry! That was almost a little note to self there! Yes, he first said 'oh i will dislocate my thumb to do that' while his brother ran shrieking into the other room and demonstrated both hands , (thumb and finger) and elbows. Almost reached hands on floor and was confused by the knees!

I may mention it to the paediatrician (poss lack of attention) as he bruises a lot and is clumsy.

Interesting, thank you. I'm not sure what it means apart from maybe letting him have a break when doing writing. It would explain all the tears and messy writing.

It's worth mentioning. I find writing absolutely knackering. Much better on computer.

I think as well if there's a considerable degree of hypermobility then certain sports might not be ideal - anything with a lot of stretching involved because the joints go far beyond a normal range of movement. Anything repetitive such as fast walking/jogging on a treadmill wrecks my ankles and knees but walking on normal surfaces ok. DD has been told not to let dgd do any gymnastics/ballet until they know whether she is hypermobile too. DD told by her rheumatologist never to do yoga or aerobics because of overstretching joints.

If ds's hypermobility is a feature of Ehlers Danlos Syndrome then it's worth knowing about because for some reason, some people with it find that regular doses of common painkillers don't work well along with local anaesthetic. At the dentist DD and I need shot after shot before we achieve total numbness. Also if any surgery is needed then consideration needs to be taken regarding sutures as raised scarring and stretching of wounds can be an issue for some people. Worth checking if ds's skin is elasticy (how far does the skin on his elbow joint stretch for example) and whether his skin feels very very soft and velvety. That is a sign of EDS. DD and I have baby soft, smooth skin which is one of the advantages of the syndrome? Also we are young looking for our age and at v nearly 56 I have only the tiniest crows feet and no lines/wrinkles.

My DD & I both have EDS Hypermobility too. My daughter really struggled with writing & now used a keyboard in High School

Can you ask for an Occupational Therapist referral - they can take a while to come through, so pushing for this now would be a good idea. At this age he wont suffer too much due to writing, but that will get worse as they write more & more in school. An OT can asses him & organise equipment to help make writing more comfortable & easy. They will also make sure that the school know how to help him stay safe, things like not sitting on the floor, no contact sports, rest breaks if he is exhausted etc etc

Also it might be worth asking the Paediatrician about testing him for B12 deficiency/pernicious anaemia

Our experience has been that its linked. I watched my DD who was diagnosed with 7/9 affected joints, but very stable elbows, develop scarily bend elbows at a time her health was getting worse & worse.

Long story short, B12 injections have had a miraculous effect on her health & her elbows are no longer bendy, her other joints have improved too. So has SPD & other symptoms

Thank you both, that's really interesting. I'm sorry it's caused problems for you, I hadn't realised.

Having looked it up now I think I will mention it, some of your comments are very accurate.

It's def worth looking into because there are things that help and it's good to know what to avoid and how to bend, stretch, lift etc without strains, dislocations etc.

Thank you. It didn't occur to me there was much to it but actually it might explain a lot of odd symptoms