EDS Hypermobility 3

[elliejjtiny]

Not sure how to start this off so I'll just copy and paste sparkle's opening post from the last thread and hope I've spelt hypermobility right in my thread title .

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.

DS2 was at school 9-1 for the first time today. This afternoon he took 25 mins to do a 10 min walk (10 mins at my slow pace pushing wheelchair and carrying DS3, would probably take most people 5 mins max) when we picked up DS1. In the end I had to pick him up and put him in the wheelchair while he was screaming "I'm not tired". What am I going to do if he can't manage full time by next september when he legally has to be in education full time? He is only doing 2 days a week as it is and even the SENCO admits she was hoping he'd be doing 3 days a week by now. The teacher just says don't worry and we'll cross that bridge when we come to it. And she calls me Ellie rather than mrs tiny which can't be a good sign .

I saw him in the playground today and he looked so exhausted. When they went into class I saw DS1 drag him off the low wall he was sitting on and manhandle him into the reception class line. One of the 1 to 1 TA's (not his, he hasn't got one) came up to me and said he'd been really tired this morning.

moose I'm sure I read something about EDS and swimming on one of the EDS facebook groups, I'll see if I can find it for you.

Lifestyle modification

For some people with hypermobility, lifestyle changes decrease the severity of symptoms. For example:
If writing is painful, people may be able to reduce the pain by typing.
If typing is painful, they may try voice control software for their computer or a more ergonomic keyboard.
If standing is painful, keep a bend in the knees or use a wheelchair.
Avoid activities that can bring on symptoms. These include standing, stretching the joints (such as in some forms of yoga), and lifting heavy objects or weights.
A decrease in heavy exercise, such as lifting heavy weights or running with wrist weights, which can be jarring to many joints, can be replaced with a more gentle run on an elliptical machine. Swimming fans could try using a kickboard to exercise in a pool (careful not to hyperextend knees while kicking the water and keep a bend in your elbows if you swim; if you have weak shoulders then avoid "arms-only" "pull" exercises in the water and try to focus on kicking without hyperextension while keeping a relaxed pace with your arms.)
Posture should be closely monitored. Weakened ligaments and muscles contribute to poor posture, which may result in numerous other medical conditions. Isometric exercises and attention to where joints are (avoid crossing legs for example if you have hip problems) are helpful to keep posture from leading to more pain.
Remember to ask for help when needed, as to not risk excessive strain when extra assistance can be acquired.

From the hypermobility part of wikipaedia

some ramblings about swimming on the hypermobility association forum

I find there is more info available if you google hypermobility rather than EDS but then most of it is aimed at people who are a lot less severe than our children.

Thanks Ellie, that's great. I will have a good read and put something together for his teacher before next week's lesson.

Ellie - my dd2 who does not have eds and is one of the oldest in nursery as her birthday is in Oct, is also absolutely knackered. We have to drive to school, as it is about 10 miles away, but she is asleep the moment I put her in the car, and sleeps again when we drive back to collect the others in the afternoon, often have to leave her in the car and she sleeps through the journey there, back and me getting out to pick up the other children! She hasn't managed a full week of morning yet, she needs at least one day at home to just sit in front of the telly! Don't worry yet, he is obviously going to be affected with extreme tiredness, more than his peers, but we are a long way off having to worry about full time yet, and if he can only do mornings next year, that is ok too, school have to accommodate his medical needs, you won't get chased by the Education Welfare Officer.

HI all....Lovely ,lovely ,lovely 1hour 15 mins appointment with a lovely comm pead ....I think I am in love with ds's community pead SHE was lovely very nice !!!

Didn't talk much about EDS or H/M as she said she would leave that to Genetics and their blood results and discus in their case history meetings (same hospital)

Right the next bit is all going to be a ramble in no specfic order ....just how I remember it !

Dietician ...yes referal made ...she mentioned it and said it was worth a try ....so no more on that as she said it was not her area ....

Next....I know by the questions she was asking she was trying to asses if he was onan Autistic spectrum....At the begining she said he had 1 quick eye glance at her ..then looked away or looked at me everytime she asked a question ....but by the end he was looking at her and laughing with her....espesially when she gave him her stetherscope (major SP !) TO LISTEN TO HIS HEART ...She asked him what did he hear ...he said "beep" and we all laughted !

She is questioning an ADD !!on the opposite side of ...lots of activity ..and maybe daydreaming sort of ADD ...but it is usually present in girls more ?

But she has recommened ED PYSC (finally) to be involved ...school have to do it and they usually get a move on in doing it if a pead requets it ....

She did mention and I knowI could have pushed it an MRI ...she was willing to do the referal but I hesitated and said I would rather wait for the results of "inavasive investigation" than put him through that yet.....

She did say hisH /M is wipping him out and possibly using up more calories than he is "eating"...

Oh and she looked at his ......yes you have guessed it .........!!!!!and eye spacing and that "grove thing"(cant remember proper name) above lip ..these thing are formed at the same time as things in the brain which is why they give an indication of other things ....if that makes sense.....

She reconds he would be better off statmented rather than on SA+...[confussed]...but that might depend on ED pysc report.....need to have meeting with SENCO

DLA forms still here !!!....maybe I should try ????..

Hope I haven't bored you all !!!!!

She sounds brilliant. Don't lose that one, a medic who acknowledges she needs referrals because something is not her area of expertise and makes no stupid and stereotypical or inappropriate dx.......!!!!!!!

Sounds very positive, and like you have a plan of action from here. What was the issue with the upper lip thingy?

bizzey - I think if you can get a statement, it gives you far more leverage than SA+ - added to the fact that they are trying to get rid of layers of SA - which could mean no support in schools.
If you get support from paed and ED Psych, at least the statement looks doable - and might be worth its weight in gold as DS gets older (naming schools, legal entitlement etc)
Had an interesting chat with an 'inclusion director' at a secondary school visit this week. She said that she had never had any student with a statement that had either dyspraxia or hypermobility. To her knowledge it was very rare to get one as all the 'issues' that might occur are dealt with automatically in house and as such don't impact on the ability to 'access education' .
So if you get supported in a statement, it could be very useful as 'in-house interventions' are only as good as if, when and who they are carried out by!
What am I looking for in upper lip? If I can get DS1s mouth to stop moving for a minute, I will check when he gets in from school!
Droopy eyelids - does anyone else have eyelid showing noticeably when awake? I had never really noticed in me or DSs except in photos - particularly one eyelid further down than the other. I noticed first when I had a portrait done from a photo, then a photo of me and 1 of the DS together - both with the same eyelid lower than the other. Then weirder than that, a family member who I never met has exactly the same. Anyone else?

Are you talking about the droopy eye-lid/elphin face EDS thing? We all had to have our photos taken for this too - makes you wonder if you're some kind of freak show the way they go on!!
We were at St Thomas' yesterday - disputes now over dx of Dyspraxia as this is so often put onto EDS instead of [and this is what we thought all the time] that EDS mirrors dyspraxic traits.
All our GOSH weights excersises are helping lower leg muscles but doing nothing for the pain and range of over-extension and laxity, and bog all for core stability and upper body..... so where from here?
Saw neruo-muscluar consultant and have to have some MRI's again to check for differences since the last ones. At the point of no return now - have little faith in GOSH - feel like we are just 'interesting' - the appt. at the Evelina was detailed and they seem so much more 'on the ball' - we were there 4 years ago , before GOSH. Help!! Seem to be going in circles now!

Please don't tell me that elfin face/features are also a trait!I think all of us have been called that over the time!
Do you think that help that you get is dependent on which dx you get first? If the dx dyspraxia is first that OT etc get involved, but that everything else is attributed to that? Did anyone here get a dx of any of the hypermobility dx and then get a dyspraxia dx? If so, who co-ordinates your treatment and do you feel that symptoms of dyspraxia are passed off as EDS etc?

aunt ds2 has a droopy eyelid. I always put it down to damage from the repeated chalazia he's suffered over the years, but you've got me wondering now.

OH dear my head is spinning now ......elfin features ? He has small features ....but then he IS small ..so don't know ! Comm pead did say that our photos would be measured for diff sizing of things, but I don't know what would be "ok" or what would indicate something is not "right"?

aunt interesting comment .....I suppose up to now I have but everything down to the H/M including speach and maybe have been leading SENCO and others as to why he is struggling at school?

Yesterday was my 1st appointment with a doctor/consulant to discuss the accademic side of things....so it will be interesting to see if they do come up with dspraxia or another dys....

I scrolled back to remind myself of your ds's dyspaxic "symptoms " and noticed some thing you said (pg16)....."dyspraxia can be linked with ADD"....and ADD did come up in our conversation .Is your ds behind/delayed at school?........(memory like a sieve ..sorry! and I think you may have updated me before !!).

Realised I forgot to say earlier, but I had an appointment with my neuro today and raised the question of whether EDS could be the cause of my brain lesions. She was really interested and went back through all my blood results and markers from both my first and second MRIs.

Apparently there has been nothing in my results to suggest brain related vascular issues, despite the lesions appearing more vascular than MS in type, so she felt that they couldn't be EDS related, but said it was definitely worth asking the question.

Unfortunately she said they are just 'anomalous' and they don't know what caused them.

I am still as to how vascular type lesions can be caused by a non-vascular event, but I guess she must know what she's talking about - she certainly sounded like she did.

WOW moose ...confussing !!......Have they ruled out MS then ?

Last visit six months ago they said working dx of ms, which would remain until I either have another major episode (at which time they would hospitalise me for steroid treatment and redo all the diagnostic tests) OR I end up with a definitive different dx which would explain my symptoms.

Today I was told that they feel they have now ruled out all the scariest dx (MS, Vascular Lupus, Stroke, TIA etc) and whilst the bit about the major episode still applies, they feel at this time they cannot say MS. She said many people at this point pursue a dx of ME or Fibromyalgia, but that personally she didn't feel that was appropriate, partly because she has seen many people receive those dx, only to end up developing clearly identifiable MS complete with clinical signs and partly because she feels they are most probably catch-all dx for people like me who are clearly ill, but as yet science/medicine cannot explain why.

Fundamentally she said, there's no question that my lesions and symptoms are there - but they don't have a clue why or what to do about it. So, I have been moved from 6 monthly to annual reviews and have to just get on with my life and manage as best I can.

To be honest, I was pretty much expecting it, so no big surprises.

I have vision problems, word finding, cognitive and memory issues, parasthesia, episodes of painful sensations that shoot down my back and up and down my arms and legs, intentional tremor, exhaustion and more recently co-ordination problems with my right arm. BUT a lot of that is episodic and I have good times as well as bad. I've had episodes since I was 19 and have always managed it myself. It's getting harder as I get older and develop more symptoms which tend to hang around longer, but mostly I do OK. Fortunately I have a very understanding, supportive dh and a really supportive Mum.

Good that they have ruled out the "nasty" ones but it must be annoying that they are unable to give you a propper DX yet .

My dad was tested for MS almost 30 years ago...think before MRI was widely used ...he had a (???sp) Barium melum ? or something ...dye into the spine and tipped upside down !..and something else but cant remember what the name is ?begins with a M.... they dx'ed MS..even though he only had one sympton /the walking ....then it got changed to spastic paraplegia 10 years later when db had symptoms and Addingbrooks took over ....

Apart from MRI whar other tests have they done ???

Dad has got CT scan 5th oct......mum now panicking that there is something REALLY wrong as we got appointment so quick !!!!!!

Had MRI, Lumbar puncture, visual evoked potentials, somata (sp?) evoked potentials, bloods, bloods and more bloods, eye exams, physical exams. The list goes on .....

Has anyone had a risk assessment carried out either for their children at school or for themselves at work or college?

I have just started at college, and my building has lots of stairs. Several of my classes are on the 5th, 6th or 8th floor. Students are not permitted to use the lifts, unless they have a disability. I can do the stairs, but it's a struggle, so I asked student services for my swipe card to be programmed to use the lifts. I have Marfan syndrome, and had surgery at the end of last year. As I was explaining my condition to the tutor, I could tell that at first she thought I was exaggerating to get access to the lifts. Then she asked for evidence of my condition, which I couldn't produce apart from showing my scars, until I remembered that I have a pacemaker ID on me at all times. I had forgot to mention that I had a PM, because that was needed as a post op complication. Suddenly the penny dropped and she went into panic mode, and asked for a risk assessment.

Does anyone know what this involves? Also, will the college tell universities that I'm applying to about my medical condition. I'm afraid that this will count against me in the admissions process. Sorry, I know this is a slight hijack of a children's thread, but it is relevant to youngsters too.

Dd has a care plan at school - which basically consists of a explanation of her condition, examples of situations where she might faint, and what to do about it. The risk assessment part covers not letting her go to the loo by herself (actually not letting her go anywhere by herself) as we had a joint meeting with me, student support/matron and her housemaster where we discussed stone corridors and stairs, metal lockers, huge school site with hidden corners where a collapsed DC might not be seen immediately, that kind of thing.

Basically we started with this and adapted to suit.

For a work risk assessment, I'd start with you making a list of things which could cause problems, and how that can be minimised. Then the employer can do similar, and you thrash it out between you. Offer to get your doctor(s) to look it over, that's sometimes reassuring.

For EDS, I think there's a sample care plan on one of the american sites, someone may know better than me (the EDS isn't our main issue, so i'm a bit hazy on specifics).

Thanks ISWM. Dd1 had a care plan too, although there wasn't much on it, apart from avoiding contact sports in PE. I shall wait and see what student services comes up with.

Madsome it may be more to do with if they have any scaners in buildinsg and like you see in teh Library

Ds3 has a care plan and is rather long winded .I gave the headmistress a book about Eds and said read that and then were talk she was rathwer white at the meeting after reading book

THS - met a family at the STARS conference yesterday - the DD has EDS, POTS and some other unrelated stuff, was being seen at GOSH, who discharged her back to her GP because she was too complicated for them to deal with. Mum has spent a LOT of money getting her seen by some top doctors (Prof G, Prof M), but no-one is doing any joined-up thinking for her .

So that's another one to add to the "GOSH are being rubbish" list.

I didn't feel brave enough to suggest to any of the mums I spoke to that they should come and join us here, but hello if you are!

Madsometimes - Student services should be doing a risk assessment for you, and have a care plan in place, which would describe all the different things you need access too, like lifts, ict access etc. Colleges and Universities are statutorily required to provide equal access, under the Equalities Act 2010, so this will not stop you moving onto further education of your choice. College are also not allowed to share medical information about you with your express permission, so it will not be the college telling future university places, but you should investigate which places will best support you academically and physically......good luck!

Midnight - I am attempting to find my "surprised face" for you, but only seem to come up with the "resigned to the futility of it all face" ARGHHHHH! Did you find the Conference useful?

bizzey - late reply - we've been away all weekend and work is a bit manic at the mo, so just catching up!. You asked about DS1 academically - he's bright - finished year 4 at a level 4 and expecting a 6 in maths and science at YR6 SATS. He does struggle with spelling and his reading holds back his literacy - but still managed a 3A - so no worries. My worry is more that there will come a point when he physically with writing/typing etc not be able to keep up. This could also apply to reading. Other worries are his chronic memory. He struggles with listening/following instructions - really basic ones, like put your pens down and leave your books in a pile at the end of the desk. He pretty much has to watch others do it, then follow.
Moose - it seems very wrong to be pleased that someone hasn't got a 'named' dx - but is still unwell - but I kind of am. Hoping that it could be something that they can treat really.
madsometimes - as sparkle says, college are not legally allowed to tell other organisations without your permission - Data Protection Act. If you did find that it had 'slipped out' - let college know you might pursue it re Data Protection - I'm sure that they would give you a glowing reference (not that they wouldn't do it anyway). If you think that a Uni knows and has not given you a fair shot at a place - Disability Discrimination.

Midnight

That sounds all to familiar exactly same problem we have . Likr go knows what to do . Sparkle like me heard some of the problems going around with GOSH at the moment . I'm kinda glad they kicked us out

Ds3 had another 24 hour cardio monitor last week we then got a urgent call with appoinment with Cardio October 12th so worried a bit that nhs moving fast for once

Still waiting to hear if ds2 referral to gastro Tjat we heard talk iis being done

Midnight - As THC says...we heard some worrying things. I shall not be seeking a referral for ds.

THC - Fingers crossed for that referral to the gastro!!!

A bit worrying about ds3 and the cardiac referral. Were they still looking for POTs plus? 2 weeks to worry about it..... How is he doing in himself?

Sent an email to PDSS this evening to ask advise about secondary school placements....he is only just starting year 5...but past experience tells me that our local authority needs plenty of time to turn around its battleship of an admissions team!