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EDS Hypermobility 3

(826 Posts)
elliejjtiny Mon 11-Jun-12 23:12:28

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 grin.

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.

moosemama Thu 10-Jan-13 17:17:35

That should have said 'the fight to implement ds1's statement'. Sorry. blush

Ds2 is 8, in year 4. It definitely helped that it was all addressed to and led by him, so not me pushing or over-emphasising things.

SENCO caught me in the playground when I went to fetch him today and told me the OT had been in touch and will be visiting next week, she didn't look too chuffed, I have to say. grin I am seriously impressed with this OT. Not only excellent in the assessment, but also quick to get the ball rolling in terms of action and support.

One thing I did find interesting was that there was lots of questions about organisational skills, if he was messy or tidy in his bedroom, if he often forgets or loses things and whether he is good at days/weeks/months and telling the time. I assume they were trying to ascertain whether or not there's any DCD/Dyspraxia type tendencies involved. It's particularly interesting because he does in fact have difficulties in all those areas, he's easily the messiest child I have ever met, really disorganised. He is still struggling to get his head around days of the week, let alone months and seasons and the one area of maths he struggles with is telling the time. We've done lots of work on all of these things, but nothing seems to help. He also can't ride a bicycle, kick a ball properly or tie his shoe-laces, again, not for the want of trying.

auntevil Thu 10-Jan-13 17:36:48

Give me a professional that walks the walk any day over the one that can talk the talk. Your OT sounds like a gem.
Interestingly, struggling with time is a major trait of dyslexia. A lot of the disorganised aspects are typically dyspraxic, in fact your last paragraph looks like DS1's CV - and DS3's CV too.
Must say OT have always been a really helpful department for us - very pro-active

moosemama Thu 10-Jan-13 18:31:45

Ah, now that's interesting, because ds2 has always struggled with letter reversals and took a long time to get the hang of reading. I was going through some of his year 1 and 2 schoolwork the other day and noticed that back then he was not only reversing horizontally - d, b, p, q, l, t, j, g, h, s - in fact just about anything it's possible to reverse - and mirror writing his name, he was also vertically reversing m and w - so mom, became wow! grin

He also reversed most numbers that it was possible to reverse. I have approached the school about it on several occasions and been fobbed off. In infants it was, wait until the juniors, then last year (year 3) his teachers did agree there was something going on, but instead of agreeing to get him assessed they had a big push on getting him to check for and correct reversals and it did help, but still insisted he didn't need assessing.

A friend of mine is severely dyslexic, a qualified dyslexia teacher and also the chair of a dyslexia charity and she said she thinks he probably does have some degree of dyslexia, but that at his level getting support would be nigh-on impossible.

In addition to that he struggles with his speech. He stammers and repeats things, particularly the start of sentences, over and over - like he just can't get the words out in the right order - he also tends to mishear things.

I do think it's more complicated than JHS alone. Probably some audio and visual processing issues, as well as dyspraxic traits, but none of it bad enough for anyone to bother taking seriously - except us. hmm

He is doing ok academically, good middle range student and happy there though, so I don't feel he wants or needs me to start pushing.

auntevil Fri 11-Jan-13 09:33:04

Can't see a problem with being called WOW instead of mom - easy mistake to make grin
Sometimes I don't think that professionals in both the medical and educational fields can see past a dx. With DS1 he has had the dyspraxia dx for quite some time now. School and OT etc have been quite good, but tend to only work with the physical aspects of the dx.
Hypermobility has been recognised afterwards and most difficulties attributed to the dyspraxia. IBS treated as a completely separate issue and related to neither. I should imagine that with DS, the dyslexia will be treated as part of dyspraxia, and very little support either. It is some huge number (from memory 75% ish) of dx dyspraxia that also have dyslexia - so you wouldn't have thought it would take such a huge leap of faith to believe.
Whichever way you look at it, employment will be harder for our DCs than NT DCs. I know that DS will not be able to get a physical/manual based job. He is currently academic, but his reading (and spelling/short term memory) lets him down and could be holding him back.
Realistically, a job where he uses his academic abilities will be his best chance. So I personally feel that pushing for support may help him later on in life.
I also think that our DCs would make excellent employees. They have to push themselves more than average, have a can do attitude and are more resourceful as they have to work within constraints.

still no more fainting from DD2 - we lurve Dr N here, and are holding her up as a Good Example To All Medical Professionals wink. The GP was really intrigued at using betablockers as it seems like it's not an automatic thing you'd think of, he was all "okaaaay.... oh!... that's very interesting" when we went to set up a repeat prescription, as he worked it through in his head. Just need to juggle finances to book the private physio appointments, and we should be pretty much under control for treatment smile.

DD1 has her follow up at the RNHRD in Bath week after next (in the middle of uni exams which is helpful hmm), and hopefully she'll be honest with them about the pain, without me being there to "remind" here about what actually hurts. Although she managed to take herself off to the eye clinic at the main hospital to check her iritis hadn't come back - we're all a bit paranoid about that, as it went undiagnosed for several weeks when she first had it (in the middle of AS exams), and was lucky that no damage was caused. Maybe she's growing out of her panicky stress at doctors and hospitals wink.

Glad people are making progress with diagnoses and finding helpful HCPs.

elliejjtiny Sun 13-Jan-13 14:25:41

moosemama sounds like you had a really good OT appointment.

DS2 is now doing 3 full days a week at school. He is now so tired he is struggling to get to the toilet fast enough and is spending a lot more time in his wheelchair. I'm not sure at what stage I should go to the SENCO and say I want his hours reduced.

auntevil Thu 17-Jan-13 19:01:29

I am quite an excited evil person today smile grin
We are now officially on this board!
Genetics saw me and the 3 DS and said that we are 'classic' EDs.
She thinks type 3, but will confirm as a few type 1 traits and that can be tested by bloods (so if not, then def type 3)
So we have gone from me knowing something was wrong and that it must be genetic, to the paediatrician who said that none of the symptoms could possibly be genetic, to being discharged by said paed, going a different route and being confirmed.
Maybe relieved is a better expression than excited. I can now say that I am not going as mad as I sometimes thought I was grin

Hi sorry been AWOL for ages been hanging out on diet thread ( lost 9 stone !!!)

Moosemama

The physical inclusion team are good and can push issues and advise teachers and help fight your corner u

As for dx yes they use beighton score but also look got other indicators skin is one tone of muscle range of movements in all joints and often that the issues were there right from word go ( ds3 were obvious from few months took till was 6 get dx )in his case scoliosis showed up and type 6 dx

Eyes can often be affected to maybe try get referral to hospital based drs

Quick update we had ds3 AR yesterday emergency one as speech unit not coping with physical issues becoming bigger and they can't improve speech any more as the hyper mobility in jaw bad and muscles not doing what needed

So been looking at schools .MS won't take as to complex but went look at Physical. Disabilities school with ds3 after meeting and observing head said yeah he fit . Was expecting fight at AR but everyone backed it !!

But needs go ti panel for change of needs hopefully next 6/8 weeks will know and if gets placd he start September ( sad in way that detoriation so obvious but glad in wag seeing it . Ds3 been lying on bench in playground trying sleep

auntevil Wed 06-Feb-13 17:48:15

9 Stone OMG shock How on earth did you manage that. Congratulations.
Has it made a difference to how you feel?
Good news about the school. It's good that you all agree. I'll keep my fingers crossed that it gets a smooth route through the panel.

Means Ot /Physio done in school they can also meet speech needs and they have hydro pool and e wry child gets least ond session a week

The head also said if panel let him come then there looking at Lycra suit to help him also a speech device also sort out nhs Wherlchair as they can see he needs

Aunt by very strict diet eating 500 calories a day very very low carb and going gluten free oh and working out hour a day and yup feel great had to do need be healthy as ds3 Goibg need me longer than normal

Yeah sadly it was so obvious to everyone that he is not coping and they struggling he struggling even standing up from the floor and walking gone downhill . Hopefully he go back to splints rather than piedros .

If they don't I will fight them right to tribunal

rockinhippy Wed 06-Feb-13 22:11:40

Hi everyone, excuse me butting in but if this is the right thread, ie, JHMS as well as EDS would someone mind looking at the thread I posted over in kids health please

Thread Here

I could do with some advice as regards my 10 yr old DD who was diagnosed with JHMS just before Xmas - she is ill a lot & I'm struggling to know what to do for the best for her - thanks

bluetack Mon 11-Feb-13 14:43:37

thc - that's a whole person shock. Congratuations flowers.

quick update from us - after the hospital refused DDs physio referral, we went (on Dr Ns advice) to her private clinic for physio. Not entirely convinced by the physio woman but DD liked her, and has been doing her exercises pretty religiously. Not sure how much difference it's making, but we go back next week.

New tablets are still pretty great, but we're now thinking that the POTS symptoms get worse pre-menstrually. It's taken this long to work out, because her cycles have been horribly messed up (to the extent that we need to speak to the GP about possibly the Pill, or at least something to induce a bleed as she's only had three periods in the past 12 months), but we also need to speak to Dr N to check if this is linked to the POTS, or is somethig else, and if the GP decides the pill is the way to go, how will that interact with the rest of her medication. Hopefully Dr Ns paed expertise extends as far as hormonal teenagers as I don't think I could face starting from scratch with a gynae sad.

Poo DD last week - she was doing her English speaking assessment (presentation to the whole class, being videoed) and got herself so worked up about it all, that despite arranging to sot down to do it, she fainted half way through, smashed her face onto the desk, and jammed her glasses into her forehead, causing a cm long cut which bled everywhere and a massive lump on her forehead (which thankfully hasn't bruised). Everyone started panicking, including DD who fainted a couple more times and hyperventilated as well, all of this caught on video as part of the official exam assessment shock. I probably didn't help either afterwards by bursting into laughter as DDs wail (while peering in the mirror) "but I don't want to be Harriet Potter" grin. I'm not evil honestly wink.

sorry, had namechanged to bluetack for another thread (which I didn't post on in the end) and forgot to NC back.

oh, actually I did blush. I'm giving up today and going back to bed grin.

Rocking posted on your thread in other name forgot to change but come post on here

Midnight poor DD . Hope Dr n can help I love her secatary looks like we're going April smile she going try help with pots but requested copies of all notes as agreed lot more than eds /pots going on

Shock good job sitting down anyway

Just been ti Physio and OT with ds3 and certainly verbally they are agreeing move to the school I want Is good idea as everything in house . In meantime they put forward for more hydro ( if gets place and comes up after September) I'll cancel as school have

She also wants him wearing large stability belt and if works going funding scrounging for Lycra suit to help stabilise joints etc

Has got injury with right knee is weaker may need splint /strap

Ot admitted today he never going use pen writing as form of media and that people need to accept it and let use computer to write and putting in report

seems everyone agreeing that it's the right move but know LEA panel law to them selves especially inarea ( lea case worker agrees with move )

Shall hold judgement till see OT /Physio report in writing but taking as good sign they ordering belt as pre trial

xxx were have go for charity finding as nhs here only fund for Children with CP

Physio support it and belt may show enough try nhs but suspect charity quicker

saw Dr N again yesterday, v happy with DDs progress (while agreeing there will be ups and downs). Physio also v happy with her, and has added 1kg weights to each ankle shock.

But interestingly, Dr N is talking about running an adolescent PoTS/autonomic dysfunction clinic along with the doctor in charge of tilt testing. She's also looking into a possible link between PoTS and PCOS, don't know if that extends to hypermobility as well, but we'll find out eventually.

And also, I didn't know that another sign of EDS/hypermobility is your hands "spooning" when you stretch your fingers out (ie curving upwards).

MerryCouthyMows Thu 21-Feb-13 15:40:56

I have just received a letter from the orthopaedic consultant confirming in writing that DS2 (9yo) has kyphosis caused by his Hypermobility.

It also confirms, in writing, that he scores 8/9 on the Beighton scale. The only point he misses is the hands on the floor one...and that is BECAUSE of the kyphosis.

Can I ask for a referral to Prof G or Prof Ninnis with this information?

He will now be seen for Physio by the HEAD of musculoskeletal physiotherapy regularly, have orthotic inserts in his shoes, and we are waiting for him to go back under OT.

They should NEVER have discharged him at 6 like they all did. Even the orthopaedic consultant stated that.

So he has had 3 years with no intervention where his Hypermobility and other issues have worsened because of the sorry state of the NHS.

I don't care if I have to pay privately for assessment for EDS by Prof G or Prof Ninnis.

I just want a phone number. I WILL find the money.

MerryCouthyMows Thu 21-Feb-13 15:43:01

HA! That 'spooning' hands thing - mine do, DD's do, DS2's do, DS3's do, my mother's do, my Dbro's do...we all have Hypermobility syndrome on our medical records!

MerryCouthyMows Thu 21-Feb-13 15:48:02

The letter also states the severity of his Hypermobility - 'tightness of quadriceps at knee flexion of 100•, adductors at 20•, hamstrings at popliteal angles of 80•, and tendo-Achilles at neutral position. He has flexible flat feet'.

I REALLY need the phone number for prof G - I'll use my own DLA to pay for the appointment!!

MerryCouthyMows Thu 21-Feb-13 16:14:40

I have found the phone number. I am paying privately (£300!!!) to get my DS2 to see Prof G.

His appointment isn't until the 7th May.

But I'm glad I've bit the bullet and done it.

I know he (and the rest of us) have EDS, I just need a fecking diagnosis!!

Merry glad found number was going say we saw him at St johnd and Elizabeth privately and was the best £300 I ever spent

Ds3 has scoliosis caused by type of EDS . Other option is referral to Proffesor pope and orthopaedic can do that especially as your son has scoliosis which may be caused by rarer type ( ds3 only 7 so young to have which helped pin point type he has >

Midnight

Intresting on clinic I know she desperately trying to get funding to set up clinics . We're still waiting to hear when in April she is free but it's private but she can then get us revered over to nhs including dietician and gastro and neuo muscular as she thinks they may be missing something other than just EDS ( ds3 has some unusual extras .but she wants to see him first then will discuss thinking with me

Oh and checked spooning hands here to ( we all carry dx of eds>

auntevil Fri 22-Feb-13 18:40:39

Spooning hands here too!
Just checked with non EDS FIL and DH and theirs are as flat as pancakes.
Anyone good tips on plantar fasciitis?

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