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]

Midnight - I think it will be more of a measuring error than an actual loss in height.

THC - I am going to check with dh tonight, then book the tickets for Sunday tomorrow morning, will ask about payment in stages.

@ secret handshake.

[SparkleRainbow]

I have booked to go on the Sunday 9th September. So now THC we need to decide where to meet up.

[TheHumancatapult]

Woot sparkle what time are you arriving ?


PD teacher today who unlike his new teacher met him and she is lovely will be having wheelchair to go to swimming and 1-1 in the pool .
Touch typing lessons . Laptop for most of handwriting


New chairs for school be ordered and she will chase them . Also she is going to push to get his OT and Physio moved to people that can get into area ok pita as I'll need travel more but I prefer that


She going look for something as Ds can't turn the taps also handbars in toilet Rail for step to outdoor

Also supervision be needed in playground and 1-1 for PE

[moosemama]

Well, we got the letter from the paed sooner than expected, but it's not worth much.

It says diagnosis: lax ligaments, discharge from clinic, referral to physio for assessment and help

Apparently his x-rays were all normal - as expected and it appears he didn't even bother to read the family history properly, as although it mentions a family history of hip problems, he states 'mum's problems seemed to settle down over time' which, if he had bothered to read them, he would know is not true. He completely ignores the four page family history I sent that clearly points to a family history of EDS and the fact that all the adults mentioned have/had lifelong joint pain and eventually joint damage across several joints.

He has specifically listed lax elbows, wrists and fingers, lax ligaments throughout both feet from toes to ankles with marked inversion of both feet, particularly the right. Lax ligaments at the knees, particularly left and significantly lax hip joints.

Apparently the paed is not concerned, because ds doesn't have any problems with his skin, has no noticeable swelling on a regular basis (well he does actually, knees and ankles) and doesn't suffer from early morning stiffness, but has greater pain at night. In actually fact ds has extremely soft, very pale translucent skin with clearly visible veins. He bruises like a peach and has scarring to both eyelids caused by repeated chalazia.

He says ds has no abdominal problems, but I'm not sure what he means by that because ds has suffered from both severe constipation and impactions that required medication in the past.

He said he arranged the xrays as on examination ds was suffering pain across his hips ankles and knees, but as the xrays were normal the pain is secondary to lax ligaments.

So, just a physio referral and a complete blanking of my question about whether or not he/we should be investigated for EDS.

What now?

[bizzey]

OH moosemama...how frustrating for you

I am no expert in this area but could you not book another app with him for him to justify what his findings are (I know that would be another couple of months ) or try for a second opion??....have you been discharged from him ??

Possibly not relevent but when my mum was undergoing tests on her painful hip re artheritis soort of thing her doctor said "x-rays do not show up pain" or something along those lines ....so just cos his x-rays are"normal" does not mean he is not in pain ....it sounds like they have just dissmissed you ....and if it is lax ligaments is there not some other ?scan/MRI/CAT(dont know just guessing) they could do to find the extent and moiniter to see if getting beter or something ??

ohhh why cant they all follow the same guidelines !

[moosemama]

He's been discharged bizzey.

I don't think there are any more tests really, it's all down to the individual doc and what they choose to call the symptoms. I am not happy with lax ligaments at all, at the very least I would have though the should have put JHS.

Am hoping we are lucky enough to get a clued up physio who can offer some advice, but it's a very long shot.

I'd go back to the GP, but can't see them referring him to someone for a second opinion, although I guess I should try anyway. Poor ds2 is really suffering and I can't see him screaming in pain and not push for something - not sure what I should be pushing for now really though.

Just feeling a bit defeated this week really, what with ds1's statement debacle and now this - am waiting for my next neuro appointment to come through this month as well - can't help feeling that's going to be just as much a waste of time.

[auntevil]

for you moose . All I can offer is to write a letter highlighting point by point all the discrepancies between the information that you have and their response. Copy this to PALS and management of paediatrics, or whoever is senior in the department in a pen pushing position - as well as the consultant. State that you are not happy with the follow up care and ask for a second opinion.
The way I see it (and I have had to do this before) is that management don't like complaints on their desks - CEOs are used to it! PALS have a duty to find out information for you and forward your complaint to who they think is right - and check that you have had a response. The consultant will not want a complaint about their approach carried forward, so will either deal with it themselves or just pass it on for a second opinion.
If the report's pants - let them know. They may be hoping that you just accept their paltry offer and won't come back. Lets face it, its all down to £££££, not people

[moosemama]

Thanks auntevil.

I can just picture dh's face when I tell him we are heading in for yet another fight.

[TheHumancatapult]

Moose how old is Ds if he is 13 then UCL other option sadly is private to Proffesor Graham

[moosemama]

Hi THC, he's only 8.

I'm fairly sure our GP will refuse to refer to anywhere else because they'll say he's been seen and referred for physio and that's enough. So our only option would be to go private, which we can't afford.

I was thinking about it in the middle of the night last night and woke up determined to email the paed and ask why he felt a dx of BJHS/HEDS wasn't necessary when ds clearly fits the dx criteria under both Beighton (he scores 8) and Brighton scales.

Mentioned it to dh this morning and he wasn't sure whether there would be any point, as he felt, going on past experience of consultants that he would just take affront to our questioning his dx and it wouldn't change anything. Sadly, I think he may be right.

Ideally - and this might sound a little odd, I would like to get my mum to go privately to Prof G and get her dx sorted. She is 65 and has suffered her entire life from classic HEDS symptoms, she gets very depressed at how little mobility she has and of course from being in constant pain. The ortho consultant, who has known Mum for years and has done all the ops that replaced her hip and knee and straightened and shortened her toe said there is definitely something going on with her connective tissue, as she doesn't heal properly, has abnormal tissue response and tends to tear through sutures. He mused about fibro, but said he didn't know enough about it himself. She has private healthcare until January when my Dad retires, so she could, I think, get the insurance to cover Prof G's fees. Then if she gets a clear dx we can use that as leverage to get ds referred somewhere - although if I could find the money, I'd much rather take him to Prof G myself.

Since all this started I've realised how much I've struggled all my life with the similar problems to ds. I had become so used to being in pain that I no longer complain or bother about it, it's just a baseline norm for me and I'd forgotten what it feels like to have a pain free day. I'm not in agony or anything, but do suffer with hand, finger, knee, hip, ankle and foot pain on a daily basis and am what you could describe as crunchy and poppy with all the clicks, pops and cracks I get from just moving around normally. I had just become so used to it that I didn't realise it wasn't normal, iyswim. It was only when I started writing the family history (that the paed either didn't read or dismissed out of hand [angry) that I realised it was so glaring obvious from my own medical history.

I'm not bothered about a dx for myself, but I don't want ds growing up with no help to manage his condition and want him to learn how to manage it to try and prevent early wear and tear on his joints. In short, I don't want him to end up like my mother and I.

I think I'm going to have to talk it over with dh this weekend, as, as usual, he is giving me the face and doesn't want to rock the boat and I can't push without his support, what with everything else we have going on at the moment.

I know it will be me that ends up doing it all in the end and along the way I'll gather more 'anxious mother' type comments on my dcs medical notes - I get so blooming fed up of no-one ever listening or taking us seriously. It was the same with ds1's ASD dx and even though it turns out I was right, there are those who still treat me as if I am a neurotic mother. . Same with ds1's statement, everyone telling me I was asking for things he clearly didn't need, until he lost it to do with transition this year and his outreach teacher and Ed Psych finally agreed that I was right about what I wanted quantified in his statement - not that they will put that in black and white to support my appeal mind you, both being employed by the LEA. Honestly, the arrogance of some so-called professionals never ceases to amaze - and infuriate - me.

Sorry for the rant.

[TheHumancatapult]

Moose for me Gosh was a Disaster

I would re comes Proff G before he retires next year and since your mum has insurance would reccomend it he has whole clinic there physios etc

Private 1 hour is £300 :(

The other option is Dr ninis

[TheHumancatapult]

Report is here and everything he said in clinic is in the letter EDS 6b confirmed which puts him around only 200 in the uk

9:9 Beighton scale and pots very suspected hopefully dr will reger

[TheHumancatapult]

Ok 9:9 Beighton scale . Outside the scale his shoulders ,cervical and thorasic spine ,hips fingers and toes were all extremely hypermobile

He has scoliosis skin soft and increased stretc scar was sucken below surface

[bizzey]

Moose...It wasn't rant ...It was ketting things off your chest !

I think going private via your mums insurace would be goo if she is happy with it ..you have nothing to lose...and it would be a shame to "waste"private health care !

Maybe then if you get the dx you could then go down the genetics route and get more help .

I have not got my app yet ...but when i chased it up with the secratary she said my pead was slow but through ....not good wheni am so impatient !!!

Have faith...you got your ds1 statement...this dosen't need to be the end for this ds..

[TheHumancatapult]

He wants him see urgent as he feels he has pots ad refer to Dr ninis . Just got to wait of GP does

[bizzey]

Ketting !!???? "k" isn't even near "g" on the keyboard !!!!

[moosemama]

Thanks for the advice THC and the heads up about Prof G retiring next year.

Good news - iyswim about your ds's report being in. Is 6b kyphoscoliotic? Having got the reports, do you still have to go back to your GP for referal for further treatment and support?

Bizzey, thank you. I can't go private myself unfortunately, but I thought if Mum could get a dx, it might add some weight to getting something done by someone about getting ds properly dxd.

I did indeed get ds1 a statement, unfortunately it's woolier than a sheep's backside and the LEA not only refused flat out to quantify and specify, they are playing games and refusing to communicate with us at all - to the extent of refusing to finalise so we can appeal. They are now on a deadline for which they have two days left, by which time if they don't finalise we are going to our MP, Councillor and taking legal action against them. Really don't need this mid MS relapse though.

Hope your appointment comes through soon.

[TheHumancatapult]

Moosemama it is but if that type not rate enough he's took it step further 6b is rarer as the urine test is normal but everything else is not akward little bugged


Yeah Proffesor G asking him to reger to St Marys urgently

Moose if you need any help feel free to yell but yep they like to play games in waiting in Ds 3 proposed statement following AR and then were bounce it back few times but there cave eventually

[moosemama]

Gosh, so he has an EDS type that's even rarer than 6 then. Our dcs never make it easy for us or the docs really do they.

Thanks for the offer re statement help. Things went fairly smoothly right up until we wanted them to amend the statement into something at least worth the paper it's written on. We actually haven't had any contact or response from them since the second week in April! Fortunately we have been told we should qualify for a legal case worker from one of the SEN charities due to my current health problems, so that makes the tribunal slightly less scary. Well if we ever get a finalised statement to appeal against that is.

Problem is, it's ds1's secondary transition year next year, so we need to get this sorted asap.

[elliejjtiny]

So sorry that you are being treated like this moose. I think there is a special neurotic mother sticker that some of these proffesionals like to stick on our dc's notes.

DS2 has EDS 3 twice some professionals think as both me and DH have it and DS2 has it much worse than DS1 and DS3 so he probably got lumbered with both lots of EDS genes.

Does anyones DC's go to a mainstream school with a PD unit. Just wondering as my sister has just got a job in one and I'm thinking maybe she'll be teaching one of your DC's (school is about 1 hour away from london). If she is I will give her a crash course on EDS and how the parents are always right .

[TheHumancatapult]

Ellie no but interested which side of London ? .ds3 is of to S&l unit base afternoon in ms

But if does not work the PD teacher is suggesting that we then look at school for PD . But if there a base near by may be an option

[auntevil]

The DS's school currently has a disability base, but that goes next term. It was part of the reason that it suited DS1 so well and I swapped him from a non base school. He gets OT and physio input without a statement.
Next term should be interesting

[elliejjtiny]

THC it's north of london, beds, bucks, herts area. If you want more details I will pm you. DS2's school has 2 other children who are wheelchair users which will be good for him I think.

[auntevil]

Ours is South - but it is refreshing to have 'parking spaces' for children's frames and wheelchairs, which are observed by all the other children, unlike disabled car spaces!

[Corster7]

www.mumsnet.com/Talk/special_needs/1512882-bendy

Hi I have already written about some of my sons problems (above link).
Was wondering if anybody could have a look and advise thanks.