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.

intresting Appropriatle

Thats the feeling im getting .They are not intrested that his ahoulders and arms /fingers are affected to and reading the bumph that has finally arrived .It focus on about not missing school .Ds3 only misses for appoinments and he is not lacking in confidence of his physical side .He will pretty much try anything and is game .

But the first day could be intresting then becuse ds3 speech is very poor even his teacher struggles some days and thats after 18 months with her in class of 10 in a speech unit and he function around a 4yo level .So they can go whistle if the thinkI am just going to leave him

But im not impressed anyway full stop as been told the Kitchen etc is not accessibile to me as im in a wheelchair .And when asked how menat to cook their reply bring a carer .Erm i dont have one ffs lol im Sp and i am my sons carer

they dont like anyone who does not fit their sterotype version of hypermobility

Discrimination pure and simple, and in breach of the Equalities Act 2010!!!!

yep and they are going to know it once i been there

I'm afraid they won't give a toss. I think they get this from lots of parents and they plough on regardless but take it out personally on you while you're there.

I'm frankly very disappointed by the experience. We got a useless little report which mentioned nothing of use and didn't put the scores in any kind of context. It was basically - DS is hypermobile and has these problems - outcome, problems have reduced. But how? There is a little chart of numbers which makes no sense at all.

They also failed to mention any of the things they were going to address. They have left DS with a directive to get back to full time schooling within a week of the report with no advice on strategies for managing this in school.

I think there are just too many children going through their programme with alsorts of different needs and complexities, that they are under pressure to show results and, as a consequence, they don't allow time for the basics like basic 'bedside manners'.

I would never get DS to go back there.

I'm hoping we have a better experience at the teen clinic at UCLH - their website claims to offer a "one stop shop" with physio and counselling and so on. If it's any good, then it's worth bearing in mind as DC get to teenage years. How easy it would be to switch from GOSH to UCLH I don't know though.

approaite im prertty bull headed so this could be fun

I would love to witness GOSH trying to take you on THC....can I come and visit...I will bring popcorn for the show! Seriously the problem is endemic from what you have described, and needs to be attacked at the highest levels, not to the people delivering this poor service, but to their bosses who may well be unaware of what the patient experience of these vulnerable young people and their families is like. One of the major problems with the health service is that no-one working for it ever truely experiences it for themselves, they are automatically treated different and with more respect.

Yes but then you find some gems who are frustrated to by what they can or can't do

Sparkle

I think my card is alread marked when the physio Drs went Oyt to discuss Rio and physios findings I told them no they discuss in front of me . ( apparently is standard prated for them to leave the room )

And lol I been vocal in chasing them to , have just called left message about the they must have trainers fine but do I buy them to gk over his dafos or to fit normally there's about 2 size difference so crucial you think they would think that some kids wear splints

I agree on their reports . When qe first saw them took 4 months to get a letter !!

Sparkle popcorn and a large hammer I shall be using both .I suspect they may be bit more careful because they are going come across as crap for bullying a disabled parent

One would hope empathy and consideration may make them moderate their behaviour appropriately, without the need for a hammer.....but definitely should pack one just in case.

Isn't it weird how different departments in the same place can be so different. I was at GOSH yesterday with DS3 - but not to do with hypermobility. ENT and feeding difficulties have been really good and on the ball. But I would definitely pull them up on the disability rules and regs THC. Its a hospital ffs - if it can't deal with aspects of disability, then they should be shamed.
I don't know whether its a good thing or not, but GOSH were concerned at DS3s lack of growth and will be monitoring. 2 possible causes, 1 of which is genetic, possibly muscular/collagen. This is giving me more ammunition to get all 3 DS genetically tested for a route cause of all their difficulties.
THC in our PCT we self refer to OT . Mind you, there is always a phenomenal waiting list, but you don't need any other professional's referral.

Yep we find same with addenbrooks , Gastro are fab , orthopaedics are shit .

Ds3 has growth issues is 107cm at almost age 7 so very tiny and not in a rush to grow is mostly 3-4 clothes some 4-5 bur has a lot of growth in them . Genetic are convinced there's something else going on but the tests are not available on nhs yet

Yep I will though lol be more fun to pack you in case sparkle And see reactions

Trouble is there program all about getting them in school full time . Erm ds3 is unless hospital appointments .

And boosting their confidence that they can do physical stuff . Ds3 does not need his confidence boosting hd is game to try things just has to do them in his own way !!and at his own pace

Same with walking he does walk but he has z very odd gait and is very slow same with arms he holds from shoulder to Elbow rigid tucked in . even when he try's to run that bits tucked in the rest flaps and IRS painful to watch . I havd videoed it to show people

Hydro call them chicken wings and reckon there's something going on that's being missed

THC I'm so sorry you are experiencing such poor medical diagnosis and support from hospital and the school. FWIW we have had a lot of time off school, the school in question were really supportive about it, however the LA wrote to say they were going to prosecute us for failing to provide DS with an education. When I rang and clarified it turns out the school had completely backed us up and supported every absence, however the jobs worth at the LA decided to 'teach us a lesson'. Absolute prick. I suppose I should have told him that at the time I worked for a solicitors who dealt with these sorts of claims, but I'm sure the strongly worded letter got the message across perfectly. DH still works in this area so if you wanted a draft letters let me know.

I would also have serious concerns that they aren't providing any extra support for his fingers, wrists and hands. We were given lots of exercises and the school are trying to source an easel type device to help DS write on a slant (which is supposed to be easier for the wrists).

As for the treatment of yourself at the speech centre I'm disgusted.

Have you thought about a gastrostomy for your DS3? We have one for DS and he can et normally during the day then has bolus and night feeds to boost his calorie intake.

I have just been to our local toddler group and was talking to a friend who is a physio. She asked what was happening with ds, and I explained about what has happened with ds' feet and continual numbness, incontinence and pins and needles with neck pain, I was careful to present a factual, non emotive account. She has just confirmed what I have always thought, our rheumatologist for ds is crap. She said that the comment he made about orthotic shoes (I am taking ds for a measurement this afternoon) was out of date, inaccurate and unhelpful, thaqt ds needs to have specially made and personally fitted shoes or else he will stop walking altogether. She also said the way ds and I are treated by the rheumie is unforgiveable and they way they have ignored the spinal symptoms and dismissed the incontinecne at the last appt (saying he is just at that age....how many 8 yr olds do you know who evacuate their bladder and don't know about it)is just worng. She said if she were ds' mum she would demand a second opinion. So under her guidance I have decided I am going to write down a log of everything that has happened, with dates and letter where I can, from the moment he was dx by prof grahame, take that to the gp and demand a referral to UCHL's hypermobility clinic, where ds last saw Prof Grahame 6 or so years ago. I am going to start on the log when we get back from the hopsital today. Dh won't help, he is still sticking his head in the sand about it all, so I am on my own, but I would really appreciate your thoughts...... The gp is fab, so he won't have a problem making the referral I am sure, but the rheumie will be mightily pissed off...do I care, should I care as he provides the local support.....what do you think, oh hypermobility and medical gurus!

Well I will do after the orthotic appt which I have to go to right now with ds.

good sparkle take the fight to them .After my experiance anyone suffering bladder issues needs urget help .Google cauda equina .

Orthitcs seem to be leading towards encouraging people to buy rather than supply the stuff.Even one friend advised to buy own splints over the counter but these can cause more problems

hmm proff Graham does ot seem to see many now your probably come under GOSH clinic which well you seen the battle im having

if the GP is supportive, then you can be referred to whoever you want (although I think there are some funding issues if your PCT doesn't like out of area referrals). I'd say that as you have already been seen at UCLH, then you're already "in the system" and what you're now asking for is a review as in the past 6 years, DS's needs/symptoms/issues have changed/got worse, and you'd like to make sure that everyone involved in his care/treatment is properly up to speed [delete as appropriate].

Then suss out a different local rheumy/ask who UCLH recommends, and get GP to change that for you. Remember that doctors generally will support their colleagues in public and to your face, but if they do actually agree with you, it's amazing how quickly paperwork behind the scenes gets dealt with. We now have a new local paed as our GP privately agreed that rubbish paed was rubbish for us, and requested a transfer. Crying also helped .

If there is no other rheumy, then maybe a general paed would work - if you get a treatment plan from UCLH, then all you need is someone to oversee it locally which could be anyone who is proactive.

HTH?

reindeer .

After my experiance Hv reported me to SS making out that i was enabling ds as more disabled than he was .She had met him twice and then ecuase of my record for pushing for dx and for help .It made for uncomfortable few months investigation .

Case closed after investidatio and meetings as no action needed and that ds3 is disabled .But was advised that maybe i should not push so much

Now means i pick my battles carefully and make sure I have solid ground for arguing for thing.I have wondered about gastro or something just becuase he struggles with eating enough ad gets tired or bored half way through .But shall wait and see .

No one seems worried that he is so small yet

Well I'd avoid the referral to GOSH - it's no great shakes and I wish we'd never bothered for all the use they have been.

There are other units in hospitals elsewhere which might be easier to refer to.

approate gosh seem to be good for some and then others they are really bad

Good advice thank you guys. I have started on the log, it is going to take a long time as there is much to say. So it will be a while before I am ready to go to gp, am going to ring UCHL first and find out whether Prof grahame or who is running that clinmic now before I go to gp too.

Orthotics really useful today. Sais rheumie is wrong and ds is actually very hypermobile in pronation 40 degrees and supination nearly 90 degrees, also rheumie wrong that ds is not hypermobile in knees as he could hold ds' femur and manipulate ds' lower limb to significant lateral angles without causing any pain or discomfort...no wonder his patella sublux all the time, the lower leg moves in complete disconnection to the upper leg in a sideways movement. He laso said it is no wonder ds has knee and hip, lower back and neck pain, state of his feet alone clould cause that never min his hypermobility in these joints anyway. Going to start with wedged orthotic insoles, and stretching normal leather shoes, if this doesn't work going to go for puropse made boots for him. So a clear action plan to try = happy mother.

Yay on orthtics that'd exactly what Ds legs do can wobble like that seperate

Hmm they find often piedro boots do not make a difference will link to research latter on

Stability boots which are higher can help . But these are big heavy things which can make dc more tired with effort of walking

We have dafos ATM and these go in any shoe so are pretty light though think were considering afos next time because of other issues

And orthtics are right if feet not right it can thrown the rest if the body out of line

hi all I am back..had a funny week and dont really know where to start...feeling very down at the moment..

Had new physio last week didnt click with her at all I mentioned i wanted OT due to hand writing..."oh no school have to sort hand writing out"....(snotty b*h) she did the B TEST that you told me about ...6/9.. oh he does need OT fingers/wrists/elbows too flexable she says....(I told you that!!!) .I think lower limbs are being kept in place by very very tight ligaments which unless i stretch will get tighter as he grows..any advice??

Even she was confused ..H/M..H/T...and tight ligaments in legs?

Still feel a fraud being on this thread as he does not seem as troubled as your DC'S...but I would not have pushed for OT on handwriting skills if I had not had all your advice so ..thankfully something will happen ??

I am going to try him at piano lessons on Monday(even though he said he can play already !!) to help finger/hand controll ?? poss even brain processing thing..I got to do something!!

RRIGHT nothing to do with this thread but thought you might like to know my other little baby(10yrs!) is going on his week school journey on sunday(MOTHERS DAY....how could they!!!!)..so am going to have a real piddily piddliy few days ...

But HEY we have got parents evening next week ...hanging on for that silver lining...

HUMM should have said ..hamsrtings are tight ankles onwards are LOOSE!!

Bizzy oh no mothers day , but on bright side dies that mean you can treat yourself to something extra. Nice

Some muscles may be tight as they are doing all the extra work and even occasional you may get muscles tighter and over devloped one side which may be pulling the actual join out

And you do belong our kids are all individual . Ds3 does not get anxious like others do or suffers with pain. So stick around