EDS Hypermobility No. 2

[SparkleRainbow]

We reached 1001 threads, so here we go with a new thread. This thread was originally started so we could get together and share experiences and expertise in Ehlers Danlos Syndrome, Marfans, Benign Joint Hypermobility, and any other medical conditions including connective tissue disorders which cause joint hypermobility, pain and all the associated symptoms.

Good news reindeer, I hope the physio helps, don't be disheartened if it takes a while though. I

THC and reindeer are the lung issues related to eds or different?

LOL at all the stretch marks you must all have . I find all these different types of hypermobility and symptoms so very confusing - there are soooo many! I did the Beighton on myself and came out really high, and I know i'm really bendy. I have very supple soft - almost fine skin - was humungous when pregnant (carried a lot of water - could have seen off this potential drought) - and not 1 stretch mark
Re the ADHD/hypermobility/dyspraxia angle. I had heard that there is often a link between hypermobility and dyspraxia. There is also a huge link between dyspraxia and SPD (Sensory Processing Disorder). SPD is often linked with lack of attention in its own right. Sensory seeking/avoiding children often look like they are not concentrating, but conversely often seek sensory stimulation to keep themselves 'awake' and focussed. A bit like doodling when you're on the phone/at a meeting and trying not to drop off!
A quick update - a couple of months back I asked for advice when seeing a paediatrician re hypermobility etc. As I still hadn't had any feedback from paediatrician, I contacted her secretary only to find out there weren't any notes to type up. So I complained, and it looks like the complaint is being taken very seriously. All DSs notes have been pulled and the manager of that part of the service is dealing with it. Watch this space.

So the paed didn't write up the notes after a consultation, that is not good. In my experience the NHS does take complaints seriously, so hopefully you will get a good outcome.

My ds is severely affected in his kinesthetic awareness, gross motor skills, coordination and muscle strength. He has many pf the characterists of dyspraxia, but he is not dyspraxic, it is just eds.

Hi Sparkle, DS has cystic fibrosis, which isn't related at all to his hypermobility and has actually been masking his true symptoms for a while.

I have been lucky that our physio made us an appointment for two weeks, because we're already in the system. However we are no closer to an official diagnosis of hypermobility or dyspraxia. I'm still waiting to get an appointment with the OT.

aunt, sounds like they are taking your complaint seriously but if they stall or aren't satisfactory then get PALS involved they're really good at representing the patients needs. And I often do the doodling to look like I'm paying attention thing wonder if I'm more similar to DS than I thought!

What is the difference between dyspraxia and EDS? DS has characteristics of dyspraxia but his teacher (who also has a child with EDS) said it could be either but she would wait for the recommendation of the OT.

~Hi sparkle no dd has 2 unrealted lung condtions which are also unreated to each other she has Bronchiectasi and something calles A1AD which is inhearted emphysema and then has iga and igg defciency whi9ch means she does not ight infection well which is a bitch with the above

Hi everyone i am back..been a busy week or so ! i have been busy gooing over my new step-grandaughter!!.. and been looking on other web sites only to find you are all talking about what i have been looking up....DYSPRAXIA!!!! As i mentioned before in an earlier thread ds has severe learning delays/problems and asked if it was all connected and i can't believe someone (sorry can't remember who) has brought up the same topic!

SOOOOO agree with who said sen/teachers/other "helpers" say not to use labels but dont those specilist people understand we don't WANT to label our children ..we just want a dx for their symtoms in order to make their life better and more fruitful..and specialist teaching so my ds might be able to read and write!!!

I was on another web earlier about dyspraxia which did connect H/M/ and low muscle tone together ..i think dyspraxics can have low tone and h/m/ BUT

h/m/'s are not all dyspraxics..have i made sense!!!!!

yes, I agree Bizzey, my three aren't dyspraxic, but potentially have EDS (although DD1 had a horrendous time at school PE - there was a running joke that if there was a ball, it would hit her on the head ). So you could be dyspraxic and have EDS; have EDS; have dypraxia; or have both.

We see this with women with PCOS (professional life rather than MN life ) who also have endometriosis - if they have pain it's from the endo, but both conditions are common, so you can have one or other or both, doesn't mean they are necessarily linked.

also agree re diagnosis - we've had people day over the past year "but if it is x, the treatment/management won't be any different", which is perfectly true, but

we spent yesterday evening in A&E as DD2 has been vomiting every time she eats for the past month, and after drinking anything for the past five days, and the difference from doctors when I was able to say last night "she has PoTS, she's been referred for EDS, the GP thinks the vomiting/stomach pain is linked" as opposed to last summer when i was trying to explain that she "faints, comes round in a "dark place" where she can't see or hear or move" and then faints again after up to an hour and is OK, please tell me what's wrong with her" (psychiatrist says that was coping strategies due to feeling totally out of control and no-one medical believing her, thankfully that's a million time better now) was incredible.

At least now I'm a pushy overprotective mum who has some medical proof (and medical jargon ) as to the issues, rather than just a potential Munchhausens by Proxy mum.

Plus an actual diagnosos makes things at school so much easier - our exams office can now apply for DD to take all her exams in a separate room, and have rest breaks becasue we have a named condition to put on the form. If we'd stuck with Rubbish Pead's "emotional" diagnosis, she'd be in the main exams hall, disrupting everyone by keeling over and hyperventilating. Which would have made me popular at school (not) .

have got pead app in 2 weeks and then ..yes i can hopefully say to ds you are not thick you have dx that somethings that needs extra help with..ie..maths,literacy,reading,writting,speaking,temper tantrums,social awareness,slowness,daydreaming,lethargy,running,jumping,climbing,bike riding...but dont worry cos your a wiz on the x-box...Iknow my ds ..he will be relieved there is a reason for it(and ?make him feel more special)..sorry rambling now on a downer

Gosh just re-read post..meant downer as in i am feeling low tonight not the other as oppossed to an upper!!!!!

Hi i was anothe rone that was told my child was just slow and lazy age 2 and not waling or crawling and that he be fine and then it was hmm maybe your causing this .No one could understand why i lept pushing for help and dx .We had quite a journey

then told yes he is hypermobily but no he not got eds dont be silly .

Now age 6 we have a collection

Verbal and oral dyspraxia This was dx by Ican~( private ) and conformed by nhs
EDS type 6 stick that in your pipe dr

Low musce tone
Global delay .
some hearing loss
sight problems
epilepsy

they do think is underlying chromsome problem

And now maybe mythesia gravius .Been long slow battle and even now still struggle with well the so and so hypermobile but he manges just fine from proffesionals and othe r people

Morning, we not sure of all thats wrong with / different about ds yet all we have had confirmed is hypermobility and significant motor function delay. Paed also mentions in letters how unable to engage ds (cause she wasn't dressed as Spiderman, of course).

We (by that I mean I as dh is obsessed that nothing wrong) believe ds to have dyspraxia and high functioning aspergers as well as hypermobility.

Still got to work out which behaviour is normal and which not. Ds is only just 4 and first born so difficult to work out. Talking to friend last night though and when discussing everything said "he was very hard work when he was younger wasn't he". I however don't remember it being hard work, thank goodness, and just have really happy memories.

Caf report with hv today - big gulp and lots of mad cleaning

Good luck with the Caf and HV today spiderman...I am sure the house is sparkling by now!

Bizzey and midnight I think you are both right re dyspraxia and eds/bjhs. For my ds he does not have dyspraxia, as true dyspraxia involves some processing issues, and my ds is affected purely physically, but if you read through the physical symptoms of dyspraxia with coordination, motor control etc then you describe him completely. One dr has said he has dyspraxic tendencies...I think this is an incorrect dx, his rheumie, gp and the eds info sites describe the physical dyspraxic tendencies as a symptoms of eds...therefore they are eds.....does that make sense?
Reindeer I would say if you child is only exhibiting the physical signs of dyspraxia then what you are seeing is a result of eds. Don't sure an OT is the best person to make that dx, I have a good friend who is a paed OT, and she has told me in the past that she and her colleagues do not know enough to make dx of complex conditions like eds.

I did wonder if it was cf reindeer. My best friend from school had cf.
THC you had told me about dd with her lung/heart issues before.Sorry I was obviously having a dippy moment earlier. How is she getting on at the mo, is everything under control for now?

I may print out and annonomise you collective comments about why a dx is important and how that is different from labels...then I can wave that at drs, school, teacher friends etc....you are all so eloquent!

Ds off to hospital this pm, to see rheumie about his feet and toes. Will be proper case conference as physio, paed, rheumie and chief nurse practictioner will be there. So fingers crossed for some answers.

Hi Sparkerainbow, spidermanspiderman

(sorry your replies dropped off the end of my 'I'm On' listing)

No he doesn't sublux and doesn't have pain, so i don't think his double-jointedness is a problem.

It is just that he identified it as one of a cluster of things that makes him different - we are still to get to dx, but possible dyslexia, adhd, tics, and so I wondered if it was related. I don't think he is dyspraxic - he is can do all sorts on his scooter (ramps etc..) and good at flips etc... on the trampoline. He has a physical fearlessness.

I told him about creative people thinking differently - Edison having ADHD and Kandinsky being able to 'hear colours' etc... and he really liked that. He pointed out his bendy fingers and toes as one of his 'super powers'

@ junior himalaya's super powers

Good to here the hypermobility is not affecting him too much then, painwise and with dislocations and subluxes.

note to self DO NOT PRESS DELETE when wanting to press back!!!!!!

spidermanspiderman i hope i can remember what i just wrote before pressing wrong button..

I have 3 ds's with 3 years between 1st and 3rd and so have got something to compare him to as i know what level he should be even on a low (not bright)level . ds'1 is very bright ds2 is a nice steady all round average(but lazy and a leftie which made writting weak and a struggle!) but i know ds3 is not just struggling with school it is just not getting processed or remembered so it must be hard for you not to know what he SHOULD be doing.

But remember he is only 4 and at an age where most 4 years old can't read or write yet anyhow but interesting comment "he was hard work when he was younger" by your friend.....that struck a cord with me because ds was (and is!) but i put it down to his demena(sp?) can you remember how he was hard work??

It has taken me till this week to realise that when he was saying shool/homework was boring it really meant it was too hard and he couldnt understand any of it and feels uncomfortable in that enviroment.

I will try and find the link with a check list for dyspraxia i did it but for older child so dont know what it would be for younger.

Still look on the bright side ..i bet your house is looking good !!!!!!!!!!!!!!!!

Hi everyone, just enjoying clean house feeling as won't last long. Hv been and refering to salt, portage and early years panel. So successful day, however, she did say we had to push paed for physio and educational psychologist and asked me if I was an over protective mum. Did actually mention that as ds is passive and not aggressive may not get as much help. Also got the all children are different and may have problems but not have anything wrong with them line! Oh and very difficult to do anything as doesn't have a diagnosis!

Bizzey, I am trying to think of ds troublesome behaviour when little. Will ask friend - think mainly to do with social interaction with other children and not listening at all.

Loving the super power theme Himalaya. Would work well with ds!

Arghhhh!!!!! A little frustration venting needed. Even when you have a dx they are still pants!

Have seen the whole crew, the toes issue ds has is vascular, but they don't know what it is, and couldn't care less, quite frankly. They gave no advice about management, they tried to convince me he had chilblains, until when they questioned ds they admitted he didn't have any of the symptoms of chilblains. I am so fed up, why are they so cr*p, why did I expect anything else. One good thing is will see podiatrist again to get some help with sourcing wider shoes. Ds has to put up with painful feet, until it gets better of its own accord, or doesn't. [frustrated]!!!!! (why don'r we have a frustarted emoticon.

Feeling frustrated for you sparkle. Sending chocolate filled vibes.

thanks for that

filled chocolate vibes!!!!!!!!!!!!!!!!!!!!

I will be following threads next week but need to spend time with ds1.... big day for us 2nd March..what secondary school will he go to!! amazing how your stomach can churrn over something already decided by them that know and i cant do anything about it...I feel it is going to be a slow week.

Might even spring clean the house to keep my mind off it ...
spidermanspiderman you have got me in cleaning mode now!!!!!

Oh Bizzey - my stomach churned when I read 'secondary school' - it freaks me out already and he's only in yr4 ! Post as soon as you know and feel able to tell us how you feel about it.
DS1 was dx dyspraxia at a very early age, 3.6. But his motor planning skills are so woeful, but academically as sharp as anything. I remember him telling the paed how to use his new digital camera. He went through everything, focussing, different modes, how to download etc. He went to take a picture - couldn't hold the camera properly and was all fingers and thumbs - over lens, trying to find the right button. But then thats still DS - can tell you all the info you need to know, but can't do it himself. The new information about hypermobility, SPD etc is all coming out of the woodwork now that he is 9 and they can't explain everything away with just 1 dx.
Strangely enough, I was looking at something to do with dyspraxia the other day - mainly because my NVQ book for TA suggested that lack of concentration was a symptom of dyspraxia - which it is not - and i wanted to dispute it. It had a list of some well known dyspraxics: David Bailey (photographer - I kid you not after my example of DS!) - Quite possibly Albert Einstein (although suggested he also had elements of Aspergers) and Daniel Radcliffe - which is much cooler to tell lads that Harry Potter actor also has dyspraxia - and look how much he has achieved in such a short space of time!
I think this is why dx is needed, so many of our DSs have co-morbidity, we need to be clear as to what each element of the dx might mean for our DCs future health - so we can be prepared and put strategies in place to help. We all know it won't change our DCs or how we feel about them. Its a bit like buying a house without a survey. At least if you know the roof will need replacing you can save up and be aware if there is stormy weather. If not - on your own head be it - quite literally!

Hi auntevil "lack of concertration and dyspraxia" ..a cause but not a sympton (just re-read this and dont know what i mean) i feel ds3 (dx) loses concentration because all his work is way above his level it would be like us learning a PHD in physics....our brains would switch off after a while because it was gobeldy gook..maybe /is what they feel..???

Interested how they diagnoised dyspraxia at 3.6 has it helped knowing that earlier.

Sparkle

Can I recommend to help with the chilblains /cold

Socks and gloves called heat holders . Ds1 and ds2 finally have warm feet ., but arghh on them not getting it

Ds3 waiting for appointment for orthotvs as his splints are marking him so I reckon that's about 16 week wait again :(

The time lag with orthotics is so frustrating.

If it only were chilblains, he has excellent pulses and always has warm feet, which the rheumie finally acknolwedged yesterday. No it looks like the blood vessels in his toes were just compromised and leaked everywhere. Which is pretty much what the gp said, but the rheumie wouldn't hear it.