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.

[SparkleRainbow]

THC wins the day....yet again.....by fighting every battle. Glad to hear you are getting input from seating reps and the pd team are going to assess....surely he must meet their criteria!!!!!!!!!!!!! As for orthotics.......the quality of an orthotist seems to vary hugely.....I am beginning to wonder what their training is.

Auntevil - is this a sports coordinator at school..... at them not telling you about their feelings re his ankle and wrists....actually I would be a bit about that. Are orthotics not going to provide the supports he needs?

[SparkleRainbow]

Incidentally I have wrist splints which look like this...very helpful for me. orthopedics.about.com/od/carpaltunnel/ss/carpaltunnel_3.htm had them for my eds since a teenager, used them also for my carpel tunnel, not that they have worked with that at all.

[auntevil]

The sports co-ordinator is a TA - a very sporty one, with very sporty children, and probably the only one that volunteered. I got the feeling that when I mentioned it to her it jogged her memory and she made that comment more as an aside.
The paediatrician said that hypermobility is normal - exacerbated by dyspraxia, exacerbated by low tone - so no support from any department as such. OT have given him a sensory diet as they are more concerned with his SPD (due to start sensory integration therapy next week). They recognise the hypermobility, but as such treat the majority of symptoms as dyspraxia. The only physio input we have is from the school - as it has a disability base.
I'm trying to go down the gastro paed route for the hypermobility issues now as paed refused to acknowledge the IBS/Hypermobility connection. I have a triple appointment for all 3 DS in July, and I'm armed with what test to ask for and how much it costs the NHS, and the fact that initially I would be quite happy if only DS1 was tested, with further tests based on his results.
Either that, or they will be so hacked off with his visits to A&E that they will eventually acknowledge how often he 'goes over' on his ankles.

[bizzey]

auntevile....that must be so frustrating for you regarding IBS and H/M especially when mine said there was a connection

I had not been too concerned about his bowle and wee situation as there was sooooo much else going on ...but when pead was checking his notes at end of consultation (he was a different one to whom we saw 1st time) he said"oh good he is on movical"(or something like that) and i said "do you think it all connected"....he replied "oh yes (cant remember it word for word )

went on about bladder been able to streatch more and lax bowle movement as in side is floppy as well

Sorry auntevile but can't remember what your ds problems are ...and there are toooo many post for me to go back and find

But I get the impression yours are more problemic than ours..which are......alternating from "hard poo"(constipation) and "mushy poo"(very very loose) needing lots of toilet paper and help to wipe (tmi )

He complains of tummy ache alot which alot of the time I had put down to "schoolitis"!! so it will be interesting if the movical "sorts"things out ?

Just realised how long it has taken me to wite this ....I started before Emerdale came on and now its nearly finished an hour long episode!!! so i might have x posted with people !!!!

[SparkleRainbow]

Bizzey you were safe in respect of xposts....I was still attempting to get my dc to bed, all temperatures, sore throats and headaches here.

Ds saw paed yesterday.....did I say this already? They are going to send him for a spinal mri.....sometime......some day.....somewhere....

[mycarscallednev]

Sparkle - not sure where you are, but my ds had a spinal MRI at the Evelina - they were lovely with him, he needed a GA as he wouldn't have managed without. They were looking for tethered cord as he has a lipoma with his spina biffida occulta. Hope you find out soon, and you all recover from the lergi. Poor you, nothing beats the Calpol Trot at 2am, and then in the morning you realise you did spill the bloody sticky stuff after all! xx

[elliejjtiny]

cars glad I'm not the only one who seems to spill the calpol every single time . DS2 woke up in the night in pain and I think he ended up with more calpol on his bedding and pyjamas than in his mouth.

sparkle I've often wondered what training an orthotist has. The one we see just measures DS2's feet, tells me if they've grown and then says I can pick up the new piedros in 4 weeks and see you again in 4 months. He is always over running so goodness knows what he is doing as he only ever calls one person in before us. Hope your ds gets his mri soon. We had to wait about 3 months to get DS2's one I think.

THC Glad your chasing paid off with the seating. Is that for home or school? What is the PD team? We have the PIMS team (physical impairment medical support I think) here who assessed DS2 but I don't know if it's the same thing.

[SparkleRainbow]

Mycars and Ellie [grin} @ calpol......good job ds has red duvet cover, still have to wash it to get rid of the sticky patches, but at least it isn't stained!

My ds had an mri last year, a flex and extension one of his cervical spine. He managed that without ga, but with the help of Queens Greatest hits, played very loudly into his headphones! He doesn't seem too worried about mri two, yet anyway. They are looking for a tethering in ds as well, not that is what it is, the problems he has are related to his cervical spine, even the rheumie has admitted that now, just have to wait for the ortho surgeon, who has asked the paed to do this scan, to catch up to the page I have been on for nearly 3 years now

PD team here is known as the PDSS, the Physical Disabilities support service, and they are the best thing since the proverbial sliced bread...got ds into the right school, got dd1 into it too, amd dd2 into the nursery, got wobble cushions, foot rests, touch typing lessions, loaned computer, self esteem and gross motor skills support teacher for over a term, supported school in organising swimming lessons at local baths....all fab fab fab.

[mycarscallednev]

Hey Sparkle - I'm moving to where you live! We have the F.A. Support Service here - does exactly what it says on the tin, you may say!!

[auntevil]

LOL at F A Services
Although seriously blonde as I thought mycars was really going to live near Sparkle I was thinking, 'how nice, they'll be able to meet up.' DOH!!
My friend the paed consultant, defo says hypermobility and IBS related. He has given me the test that needs to be run. He was also disappointed that when they had endoscopy/colonoscopy that they didn't do a muscle viability dissection.
DS3 has GOSH in July, and I'm suspecting that he hasn't grown or put on weight since last time, so I might see if they will take up this info. The following month all 3 have appointments with gastro consult, so will also bring it up then.
If all else fails, my friend has said that we will arrange a day for DS1 to be 'suddenly' taken into his hospital's A&E suffering from his painful cramps (easily brought on for real by giving him fruit) - and as the consult on call, he will OK the test based on his past history (which he knows as he has a copy!)
Can you tell I hate being without a plan!
bizzey DS1 dx dyspraxia, hypermobility, SPD, IBS, food allergies. DS2 likely to be hypermobile - already had hip issues, all the usual atopics (asthma, eczema, food allergies), IBS and just referred to CAMHS by school as concerns re anxieties and social development. DS3 - Also showing signs of hypermobility (although only 4), usual atopics, IBS and dysphagia. He is unable to move food around his mouth to swallow. He is at GOSH re lack of physical development, having gone from the 98th centile at 2 to currently not much above 15th, although not plateaued. Basically enough to be going on with with the 3 of them . But I am forever grateful when I read some of the issues on the SN section, as I know the DSs are not suffering as much as some of the other DCs

[mycarscallednev]

I think if we all moved to the same postcode we may get the NHS to sit up and take notice - EDS overload may count for something - and if not, just think of the party we could have!

[auntevil]

At least we could all show there was a need for a specialist locally - and I've always fancied Cornwall. I come from smuggling Cornish stock originally - one that took on the authorities and with bribery and skulduggery won. Do you think it could work on the NHS?

[mycarscallednev]

hey I've Cornish blood too - oh 'eff maybe that's the missing link - the one Prof Pope keeps missing - its oggie related after all!! We're not in my lovely C'wall now though and our LA are shite with a capitol S - lets work out who has the best LA [Sparkle your's is looking good!] and just bugger off there!!

[elliejjtiny]

I'm up for a move, just have to convince dh to leave his shed .

Just thought I'd ask those of you with older children. Is there a cure for EDS that suddenly happens when a child is 5/6? No? Thought not. So why do people keep saying that DS2 will be fine when he is in year 1? It's always the people who have no clue who say things like that. Sometimes i feel like strangling the next person who says it.

In other news DS2 got his high rate mobility . We found out yesterday. Only until April next year though so in a few months time I'll be filling in the dreaded forms again.

[bizzey]

ellie ..yahhhh congrats on getting hrm did you get care as well ???

Only asking as i am due to send my form in this week ...if i get it tidied /reworded enough !!

A friend is reading through my rough scribble of a draft this weekend(her ds gets it so knows the language needed)

Feel funny about applying ...one minite I am up for it as I could do alot of extras with him ..then the next i feel no i shouldn't as there are far worse than him i am making a fuss

Don't want to move but would love to meet to see if my images of what people look like match to what i have got in my head with just names and what they write !!!!!!!

Had general meating with my lovely SENCO and she said she would photocopy at school anything i need to send for DLA as otherwise it would cost me a fortune.... ahhhh bless her !!

Now ..just to remind you that I have a GOLDFISH MEMORY ! are all our dc's (mainly ds's if i am right ?) ALL thin/skinny (underweight ?) and smaller than their peers ??? Coincidence ??

[elliejjtiny]

bizzey Good luck with the dla claim. DS2 got middle rate care too although we had been getting that since he was 1. The underweight thing, well DS1 is fairly small all over, 25th centile. DS2 is around 9th centile for both, bit over for weight, bit under for height. He hasn't been weighed since christmas and seems to have thinned out a bit since then. DS3 is fairly average for a 7 month old, except he is 17 months old so he is generally small. DS2 and DS3 were both failure to thrive as babies. DS3 due to reflux and DS2 due to not being that good at breast or bottle feeding. When he got a bit older my mil was feeding him crap at every opportunity and that seemed to help (but don't tell her I said so ).

[IShallWearMidnight]

DD is smaller than most of her friends, but not skinnier (29DD bra, bit of a nightmare to buy ). DD1 is shorter and slim, DD3 is tall and very skinny (ribs showing fro t and back, we had to enforce a "tshirt on when in a leotard" rule when she was trampolining as it was a bit eugh otherwise...

So no pattern with us

[IShallWearMidnight]

28 not 29,that would be hard to buy

[deepbreath]

Good luck for those of you applying for DLA.

Ellie, sadly there hasn't been such a cure for dd who is now in year 4 - where did that time go?! Some people do seem to talk out of their opposite end...

Bizzey, my dd is 9 and has Marfans so she is slim but quite tall for her age (the tall, slim thing seems to go hand in hand for most kids with Marfans!)

IShall, I kind of hope that dd ends up fairly well blessed in the chest area as she has pectus excavatum. Some adults with Marfans/CTD's ended up having corrective surgery (which lots of hospitals aren't keen to do here in the UK), or some resorted to having breast implants to try to mask the dip in their chest.

Sparkle, dd had to have an urgent MRI of her neck last week as the Orthopaedic surgeon noticed that something wasn't right. It was confirmed by xray that dd has larger than normal gaps between the vertebrae in her neck so just waiting now to see what happens next (have already been warned of the possibility of having to take her to Birmingham Children's Hospital to see a Neurosurgeon).

[elliejjtiny]

deepbreath I thought I'd be right. I keep asking why he'll be fine in year 1 and I just get the answer of "well, they all catch up in the end" . I keep getting a response of "all 4 year olds get tired" from one teacher when I try and explain how exhausted he gets. He spent the last settling in session asleep in the corner of the classroom, hopefully the teacher gets it now.

DS2 has been watching some of the songs from glee today (thank goodness for dvd's, just had to go into the special features and press play all songs, not like when my mum had to fast forward to the songs on my grease video ). He asked me if he could do that thing Artie does when he balances on one back wheel and spins round.

[SparkleRainbow]

Mycars - at your F.A. support service!

Auntevil - that is a plan I could work with...I hope it won't be necessary for you, but I think it would work just fine./ Nice to have a friend who is a paed!

Bizzey - mine is a ds, thin/skinny but tall for his age (75%tile). When he grows, he grows up, but puts on no more weight and so gets thinner and thinner. He was on the 94%tile until he was 6 six his pain got much worse.

and (being the response they deserve) at people saying he will be all right in year 1!!! I got that for year 3 and now I get it for year7...oh yes it will all have gone by the time he is 11, honestly!!!!!!

Good luck with the dla claim. I know what you mean about feeling there are others worse off, but try not to dwell it is hard enough to do to face what is involved in living a normal life as possible for our dc, without adding guilt to the mix. Despite what the government may feel about us, DLA is supposed to be therre to help.

Ellie - yeah! big celebrations on getting the mobility!
Can't help but whilst still frustrated on your behalf, at your ds asleep in corner of classroom during taster session, if the teachers doesn't get it now, I would suggest bashing her over the head with eds literature until it sinks in that this is not normal for a tired 4 year old. at role model for Artie.

Deepbreath I had forgotten your dd has pectus escavatum, like my ds. Is it getting worse or holding its own at the mo. I think ds' worsened last year, but seems not to have got any worse this year. I am thjinking we might get away without surgery. When do you get the results of the mri? What is the significance of larger vertebrae gaps (which I have by the way)? It sounds very worrying. Ds' ortho surgeon at Royal Orthopaedic hospital also runs a clinic at Birmingham Children's, His name is Mr. Marks, although we have only ever met one of his minions.

[auntevil]

Bizzey - DS1 is the only one dx hypermobile (amongst other things ) - and he is tall and skinny. One GP did once mention Marfans though, as he has slightly droopy eyelids, but then he is lazy, so maybe the eyelids are too?
I'm currently thinking that DS2 could be hypermobile - but with no side effects. He is very athletic and sporty - almost overly so. But I have noticed a curvy angle in his spine. It looks straight from full on back view, but when he turns to the side, the spine looks far too round. He is very tall and very skinny.
DS3 at nearly 5, is also very 'bendy' - but probably a bit too early to tell. He is failure to thrive and at GOSH because of it. He is very skinny, and very short - but wasn't born that way.
DS1 was seen by the physio at school today as he went over on his ankle, again, and I wanted advice as to exercises and support. The school still seem quite adamant that he should partake in sports day. Unlikely!

[SparkleRainbow]

Auntevil - Are the school aware that all the twists and turns he does on his ankles can damage the ankle joint? It is all very well them being pushy about sports day, personally I am very inclusive and would want him to be able to join in but it has to be undertaken in a safe way, which limits the kind of damage he can do...it makes me cross that they are being pushy without listening to you.

Scoliosis is a well documented "side effect" of EDS, and I would guess like all things it doesn't have to be very bad scoliosis...there are degrees in this....possibly. Who is reviewing him next....would be worth getting his spine checked.

As for ds3, I know from this thread that as a tertiary centre GOSH can not refer to their own departments for a different condition, but maybe the argument that his failure to thrive could be EDS related and he is showing hypermoibility like ds1, so it is all part of the same possible dx and could they get a rheumatologist involved.....not really a different referral, just getting the right dx in the first place.....or am I just wishing that that is how it should work.

[deepbreath]

Ellie, one of the other parents of a child with a CTD has a whole album on Facebook of photos of all of the weird and wonderful places that their child falls asleep! When my dd was small, I put her tiredness down to her being on beta blockers for her heart. Btw, I would love to see a wheelchair wheelie too, but not if it's likely to cause a dislocation! A local special school put on a course to teach kids some wheelchair skills like that but we decided it would be too risky for dd to go at the moment.

Sparkle, dd's chest seems to dip in more when she's having a growth spurt. We know when that's happening because it gets sore. I asked dd's cardiologist about options as he commented that dd's chest wall was starting to put pressure on her heart but I got this look and was told that surgery would only ever be offered if the dip got worse as they consider it to be a "cosmetic" procedure. Still no news yet about the MRI but it's only just over a week since she had it done. I think they are worried about spondylolistheses (?sp), where the vertebrae can kind of slip over each other. They haven't told me that, but that is my guess. I know a lady with Marfans that had a fall and did something similar to her lower spine and lost about 10" in height because of it.

Auntevil, the sloping eyes is one of the things that some doctors pick up on with Marfans, but I have seen people with other CTD's that have a more obvious slant. I think that the hypermobility as a stand alone diagnosis isn't as bad as when it comes as part of a CTD. My ds has hypermobility but as his overall muscle tone is quite good, he has only subluxed or dislocated very rarely. Most recently, he was playing swingball with me and tried to clobber me with the ball - he took a swipe with the bat and subluxed his shoulder! It went straight back in on its own though.

[TheHumancatapult]

will catch up reading stil ongoing with battle physio latests plan next year is he is to leave early to walk to swimming and then inish the lesson early and walk back .

Thats what physio wnats she said no wheelchair lol i hope they have comfy spot in afternoon becuase he will be wrecked

but on the good news jut got back from seeing proffesor Grayham and he is fab ,Tols him Gosh was ignoring proffesor pope letter which I gave him copy of and he agreed .Ds3 does have eds and base don his exmination he concurs that type 6 is very very likely said he is one of the most bendiest dc he has seen in all his years of praticing .

He then got ds o stand up and sit down few times while he took his presssssure and heartrate and then again as ds went on floppy and said he suspect ds3 has POTS as a extra .Even though is mor eunurusal in younger dc but ds dramamtic collapses point towards this

Siad he would love to have ds under him on nhs but he is not contracted to nhs for under 13 but he is writing to Gp to ask ds to be refered to a colleague of his in the nhs who he works closely with and he is digusted with GOSH .

Await letter /report with intrest but best £300 i have ever spent