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.

reindeer so sorry about your MIL

sparkle from what I can work out from the letter the hv referred DS2 to physio by mistake instead of direct to wcs. They refused the referral because DS2 has been discharged from physio and hasn't got worse since then. I phoned wcs and as he has been seen by them before they will accept a referral from me.

THC I thought I wasn't easily shocked before I read that. DS2 can walk but not far and wouldn't be able to walk to school unless we lived pretty much next door to one (which we don't). Last time he was assessed he couldn't walk at all so not that confident he will get anything now.

found out today that dd1 dla is to be stopped, apparently theyhave decided she doesnt need any more supervision, guidance and attention than any other child of her age.

I am fuming, nothing has changed in the last few years if anything she is worse, during the holidays we are stuck in as she cant walk far, she has physio appts, appts for her chest problem and an op coming up soon, gets pain in her legs daily and cant even do pe at school. she cries in the mornings as she is tired and sometimes cant even get back up stairs to brush her teeth.
She cries because she hates the boots and orthotics she has to wear but according to them she is no different to any other child her age

hope everybody else having a better day than me, havnt been on in ages as having a few problems myself with my pregnancy and just day to day coping.

Ariane was just wondering how you was

Ugg on the DLA can you phone them up ask for reconsideration as s first step ? . I'm expecting ds3 will go next year or go down at least

Ellie

Yes sadly wcs are being super strict . Even as a full time chair user I had a fight to even get a decent manual .
Rio is the same around 300m is his lot and that's at his pace and with his odd gait and stumbling no wheelchair well not of nHs anyway . We got our own

Bizzey

That must be tricky when others not understanding . Ds3 being youngest I think has made it easier on me

Sparkle

How is Ds now ? Is he sleeping ok

The clinical psychologist gave us two different relaxation cd's designed for children, to try out. The last few nights they have both really helped to calm him down. I also read through the eds booklet with him, I got a copy of the eds support group's own for schools, it is very simple, and not as useful as the american one I posted a link for on here not long ago. It is written quite simply and it seemed to help ds, as he could see this published booklet which explained most of his symptoms and therefore really showed him he was not alone. His headteacher also talked to him one to one yesterday, about all he has to deal with, he came out of school yesterday and said "She talked to me about not letting it get me twice, in my body and in my mind", I asked him what he thought of that and he replied she was probably right...slow process though he is still very angry and very moody, it is heartbreaking, I did catch him hitting himself yesterday.

Ariane - I think THC is right, start by ringing up and asking for a reconsideration straight away. If they refuse after the recon, then we will help you sort out what extra info might help, and then you see if with some help from the medical profession you can get it reinstated on appeal.

Ellie and THC - I despair I really do, what on earth are wcs thinking.....do they think we can carry our kids, or do they think kids should just stay indoors and live like recluses....It beggers belief.....

Bizzey - we can win for losing with our dc can we. My ds is jealous of dd1, as she can do everything physical easily that he struggles with, my dd1 is jealous of ds because he gets all this extra attention, taken out of school for appts etc. It is so so hard.

Reindeer - was the dietician saying poor weight gain wasn't related to BJHS then....it is very related to EDS there are lots of reports and studies connecting the two. As far as I can see the more other symptoms that are involved the more the dx tends towards eds rather than BJHS.....clue being in the word benign doctors! s' paed said his weight loss and follwoing slow weight gain were undoubtedly eds related, after she had ruled out coeliacs, thyroid and diabetes.
Psychologically speaking I don't think one can distinguish between the effects of BJHS/EDS and CF, as far as your ds is concerned something medical is affecting his life. we can all understand
I am sorry to hear about your MIL, it is a shock to lose someone.

have asked for reconsideration today and have 4 weeks to submit any letters etc, the school said they will write for me as will consultant, hpefully a different decision maker will realise she does need it.

in a bit of a rush but will be on tomorrow

Reindeer tough time for you.
sparkle interesting re weight loss and slow weight gain. That is why DS3 is at GOSH - that and eating (swallowing) difficulties. Bless him, he has only put on 200g, and grown 0.6 cm since last July. I was putting clothes away in the wardrobe today and thinking about summer clothes [mad woman emoticon]. DS1 will need next sizes up, DS2 can go into DS1s old ones and DS3 can wear the same as last year - doesn't help that the 2 older ones are giants for their ages.
Still, it all goes to add to there being a genetic problem as only DS1 dx hypermobile, but I'm beginning to see some similarities in DS3 (4)
To all of you battling DLA - thoughts are with you - keep up the fight. Don't be a victim of their tick box mentality.

Aunt

Ds3 is still wearing 2-3 trousers and 3-4 trousers that have room left to grow . He is really tiny and slight especially his legs that don't seem grow at all . Only a size 7 shoe when not in splints . He is just below the 2% for height and weight for his age

But his head is above the 50% line for his age . So out of proportion hence why gentixs sure something they are missing

Sparkle do like the sound of your head that's a good line to use . Hopefully now school more able he may start to lose some of the anger

DS3 is tiny (aged 14 months and wearing 6-9 month clothes and 0-3 month socks/booties). DS2 is short and chubby (aged nearly 4 and wearing 2-3y clothes and size 23 peidro boots). Both have heads on the 50th centile.

Just had the latest report from GOSH and DS3 is now 25 centile. It never ceases to amaze me that there is so little done when he was off the chart when he was born (taken out 3 weeks early so he didn't get too big) and kept to a 95-98 centile for 18 months, then when he couldn't wean, dropped off and off. His 2 older brothers were born huge, and remained huge. Only difference was the swallowing, and being able to eat solid food. Because he isn't yet 'failure to thrive' no-one is that interested in doing anything proactive, just a wait and see mentality - until he drops to failure to thrive - when it will probably be "mother, why didn't you do something sooner!"

I have to say ds's paed, who was also dd2's for her heart murmour, has proven to be thorough and true to her word. I think I am lucky there, makes up for the rheumie being such an arse....(oops sorry everyone ) - actually it doesn't make up for it at all.

Ds saw Ortho consultant, at Royal Orthopaedic Hospital in Brum yesterday. did full spine xray and flex and extension neck xrays....says in nice way ds is very hypermobile in his neck...chin on chest and back of head on back....completely on back! Says is happy as can be with neck at mo, but sending ds for a whole spine mri, to see if can find reason for incontinence, as he doesn't think it is neck related. I think he is wrong as it only happens when he has neck pain, and he is basing that on xrays and mri taken when ds not in pain. Having said that I disagree it was still a very positive, supportive and respectful consulataion, he actually spoke to ds but not in a condescending way, but really sympathetic way. Made me realsie how negative and dismissive rheumie is.

auntevil double I think you may well be right

sparkle on the plus side at least the Ortho consultant was respectful - small mercies I know. Sometimes I feel better knowing that at least I was listened to - even if they didn't agree - than being dismissed as 'just a parent'
Is there any other way of finding out if the neck pain is involved?

Hi

Can I join??

i have not read the whole thread yet so do not know everyone's stories, but will do so tomorrow

DD (4) was diagnosed as being hyper mobile in 2010 (she did not walk till she was 2) but has not had physio/OT since then until today....

Basically today's OT session shows that she is severely delayed in her balance, co-ordination, postural control, handwriting, dexterity and bilateral co-ordination TBH its come as a shock how bad she is, so am still digesting it

She is due to start reception in sept and will need an IEP and weekly OT sessions until then, the OT is also going into her nursery school to train/talk to her teacher about what DD struggles with.

She has also been referred for a group therapy session (there is a waiting list)

What has helped your DC with similar prognosis??? thanks!!

Hi Simpson and welcome. I have 3 DS's aged 5, nearly 4 and 14 months. DS1 has very mild hypermobility, DS2 has severe hypermobility and DS3 is somewhere in between although more severe than I'd like to admit most of the time. This might be too late for your DD as they only see pre-school children but DS2 really benefitted from portage.

Has anyone got any potty training tips? I'm trying to potty train DS2 at the moment. It's being made more difficult because he can't get on and off the potty or toilet by himself.

What is portage??

DD is starting school in sept and is having weekly OT sessions till then (and maybe twice a week in the summer hols) she has also been referred for a group therapy session.

The main problem seems to be her hands atm so we have lots of exercises to be getting on with!!!

Thanks for the welcome

portage . Basically a lady came round once a week and did exercises through play with DS2. She was the only professional who DS liked, because she made it fun. Some OT's do something similar though and if you are seeing the OT every week then they will probably be doing similar to portage. We only saw OT every few months but she just sorted out the equipment side of things (seating, SN buggy).

Oh thanks.

The OT seems to be doing a lot through play (although yesterday was our first session) DD had to play bowling, walking over different surfaces (basically plastic stepping stones with different ridges on them or an uneven surface iyswim).

Most of the session was taken up with the initial assessment though, so poor DD had to sit there for ages writing, copying shapes, doing puzzles, threading beads, building towers with blocks etc.

Hi everyone, thanks for all of your support - it has been much appreciated during a very tough week.

No further news from us, as we are still waiting for appointments.

sparkle I will research the weight loss/EDS link and take it with us to our appointment. I know our dietician is a pediatric dietician but she specialises in CF not EDS which it could be linked too.

aunt evil. It is awful they won't do anything until it becomes critical. Why are they waiting for him to be classed as failure to thrive when you've identified issues now that could prevent it getting worse if they dealt with it properly. It is so frustrating isn't it?

ariane good luck with your DLA appeal, I'll keep my fingers crossed for you.

bizzey Its a shame they won't push the counselling further just because you don't have an official dx yet. Can you try and get the counselling via the GP if that will be quicker?

simpson hi and welcome, these ladies are wonderful and very knowledgeable about all areas EDS/BJH related. I know it sounds bad but at least your already in the system, it's such a battle to get any help, and I hope you start getting more productive OT sessions soon.

ellie I didn't realise you had three DS's with hypermobility. How do you cope. Did you get the special buggy or go for the wheelchair in the end? Sorry you may have said and I missed it.

Hi to anyone else who I have missed :)

Hi Simpson , have you talked to the school , Dd will go to ? It may be worth sharing reports with them once you have them . Are they going to offer any regular OT sessions ?

Sparkle pleased ortho was respectful and listened and maybe MRI will show something . You can have problems lower down that cause higher pain so may be worth ruleing out

Waves to everyone else , will be back Weekend currently in Edinburgh may I suggest unless you like hills lol avoid

TheHumancatapult - she is having weekly OT sessions starting next wk and is on the waiting list for a group therapy session too. The OT suggested that in the summer hols just before she starts school they may up it to 2 sessions a week.

The OT is going in to DD's nursery school (which is attached to the school she will start in sept) to train/talk to DD's teacher.

Hopefully, DD will have the same teacher in reception but if not I may suggest the OT going back in to talk to the new teacher. She will need an IEP from Sept too, although don't know what this will do yet...

Hi Simpson - it sounds like you have made a good start with the OT support and getting school involved and "up to speed"

To save you reading back, and trying to pice together our story..... I have EDS hypermobile type, and so does my ds (aged 8, nearly 9), I have two dd's neither is affected, although both have heart murmours, dd2, having a pulminary stenosis from birth, this is almost certainly unconnected and will not prove to be an issue for either of them....they are certainly asymptomatic on the whole, barring dd2's dodging periferal circulation.

My ds is profoundly affected by eds, he has pronouced hypermobility in his major joints - spine, hips and shoulders, as well as his knees, fingers and toes. He has a history of dislocations and subluxations, including his cervical spine. He suffers from urinary and sometimes bowel incontinece, poor coordination, gross motor skills development, handwriting etc. He struggles to sit still, as he is needing to constantly adjust his body for pain. He takes pain killers regularly, and has daily physio (oops haven't done any yet this holiday ), he has a one to one TA, funded by the pct, who is there to do physio, gross motor skills development, hydrotherapy and support with writing, pain relief and emotional support. He almost certainly has neurally mediated hypotension, having a fast pulse rate, and sweating profusely, and being prone to fainting or feeling dizzy, but his rheumatologist is rubbish so we do not have a proper dx. He has been affected with weight gain, becoming very thin indeed, he has severe pain in his feet and toes, as yet undx and is in the process of having Orthotics made to support him.

The bits provided by orthotics which have made the difference for ds are the vaious spints or braces, fingers, knees and neck. We use a warm compress which is helpful, he has a wobbly cushion for home and school, writing slant and foot rest, thick pencils, use of a computer where PDSS are supporting him with touch typing.

The professionals he has involved are two rheumatologists, a paediatrician, an orthopaedic surgeon, physio and clinical psychologist.

Wow sorry that is a bit or a major post, but I thought when I started writing it might be helpful to know which people are involved for ds and how......sorry

Physio physio physio all the way for ds, that has been the most helpful, and of course his lovely TA who helps me to implement everything.

THC - are you doing wheelies down those hills then! I hope you are having a lovely time. You are right about the mri...I am all for it, and ds is ok with it, can't help feeling that we will be one step closer to working out what is happening, even if it is a matter of ruling something else out.

Bizzey - as reindeer suggests would think about pushing for counselling or similar through the gp. It was our gp who referred ds to the clinical psyc.

aunt evil and reindeer - I am sure it is realed to eds, this failure to thrive. One of my dear friends said...ds looked like a boy who needed more cake, lots more cake. Which is partly what I did, it made a difference for my ds, but with the number of calories a day you have described reindeer it has to be more pronouced, and possibly more compliacted with you. My ds has alays had a senstive digestive system, food intolerances etc, but he has also been extremely regular (tmi -sorry) so I don't think eds is affecting how quickly food passes through his sytem and restricting his calorific uptake, I think for my ds is was pain and shock related limited appetite.

realed = related

THC - I've been to edinburgh, the walk to the castle nearly finished me off .

Reindeer - DS1 is only very mildly affected. I only found out he has it because when DS2 was diagnosed the neurologist looked at me, DH and DS1 as well. We're still waiting for an appointment with wheelchair services at the moment.

We had our genetics appointment today. DS2's chromasone test was normal but his muscle enzyme is a bit high, but not enough to be muscular dystrophy. She thinks they probably all have EDS type 3.

Does anyone have an idea how DS2 will be affected by the EDS when he is grown up? In some ways he is improving but with new skills there are new challenges. I have started potty training him and he is doing well but he can't get on and off the potty by himself. He still has a nap in the day. As he gets older it becomes more noticeable that he really can't walk far at all. I know it's daft but I've been wondering if DH and I will be able to go off on holidays when we are older or will we be helping DS2 on and off the loo still.

HI ALL and welcome simpson..
Well what a funny week i had since my euphoria of the blood tests!!

Got a letter 3 days later saying my next app was....7th JUNE...presume standard letter but no one checking blood tests to see if we need to go sooner.... rang sec of pead clinic and she said ,the doctor we saw was a locum so not going to see him again and cant get earlier app as they are "narrowing down the pead clinic"(I reckon 7/6 is going to be cxled any how they always are!)

I have asked for bloods to go to GP and I will talk to him ,hopefully 1/2 weeks
..my GP is going to have to start earning his money and treat us as a mum and child that need help...and not a silly over-reacting mummy(u know what i mean!)

OHHHHHHH that carrot still dangles!!!

Had horrible week...NEW car still in garage so been on buses and lots of walking ds(DX) ready for lie down when we got to school !!

BUT....... ds1 and ds3(dx) won THE HAT PARRADE at school!!

Think March was too much for me this year...waiting for 2 school ...clothes and finally school journey for ds1...blood for ds3 ,school hats ...no car for 3 weeks...am just feeling better from having a funny "flu"...no energy ???? i feel i have burnt my self out ..does that make sense ???