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.

(((hugs))). DS2 gets middle rate care and no mobility (too young for low rate mobility though) and DS3 gets nothing. Did you get help filling in the form. I find if a proffessional helps you you are more likely to get it as they know the key words that the people who award DLA are looking for.

ds deserves dla, in that he meets their criteria for HRM and MRC, but they said no and said no again at reconsideration although they did admit he was in danger when he falls, and that he falls regularly....meaning more than once a day, but appraently it is normal for a 8 yr old to soil themselves randomly through out day, and normal for 8 yr old to need 30 mins physio morning and night, and to need constant supervision as minimum when washing, and have problems eating, and see clinical psychologist for emotional distress and be in near constant pain, and to be hospitalised regualrly...... sorry not at all bitter. Think if I were to apply now, when have got so much more support in place, ironically the would be more likely to award it, as compared to when I was desperate for help and had none, including from DLA..... No really not at all bitter!!!!!!

nev - sorry you have had such an awful day. I too send big hugs.

Thanks everyone - we all have days like this but this has been shitty in the extreame.
Had enough now - and can't wait for our wonderful 'day out' to GOSH tomorrow - Genetics say his muscular weakness is due to the degree of his EDS - proven by the genetics tests now - GOSH just like to tell me that after 2 years of doing the physio it's obviously my fault for doing it wrongly................ how I am looking forward to yet another day of justification and fighting our corner, when is enough enough do you think - or are we just super-human and due to the fact we have disabled child [not a word favoured by GOSH, by the way], we just have to smile and carry on regardless. Would like to give up - but can't, I love my son so much, how the **ck can I just give up now?

sorry been tricky day

hmm were possibiay unusrual in that ds3 gets HRM and MRC .But it is not on the EDs alsone the care relates to teh fact he has problems in bathroom /personal care also some of his moblity and care is down to teh fact he has whats temred low natrual speech

Oh nev - I am sorry it just feels too much at the moment. I hope today was ok, and not as you feared. My ds' rheumie says stupid things like "we don't want him to feel different"..... really....but he is different isn't he..... Stupid stupid unhelpful comments like that make you feel as if the world is against you. Whilst we all want the best for our dc , and for them to have a "can do" attitude, they also have to acknowledge what they "can't do", so they can live happy, managed and well balanced lives. Remind me what genetic test you have had?

DD2 had a meeting with a psychotherapist today (along with me and the psychiatrist rubbish paed had referred her to) to see what sort of ongoing counselling might help. New woman was a bit surprised that DD was focusing on the new clinic appointment diagnosing EDS or ruling it out so that if it had a name she could say "right, yes, I have this, but that's not all of what I am" rather than having to apologetically explain to assorted A&E/minor injury units "yes, i faint, yes it's being dealt with, no, I haven't been diagnosed with an actual condition that you can go away and look up".

I think an awful lot of medical people forget how "normal" (i.e. non-medical) think - it's so much scarier to have something wrong with you that has no name, than to have a condition which maybe labels you as disabled, but means you can access help you need. DD 's school has been much happier to have her there now that her fainting has a "name"; the exams office has put in place help she may need (a separate room so that the whole exam hall isn't disrupted if she needs to go to the loo and keels over when she stands up; the facility to stop the tape for language listening exam if she needs a break); whereas last summer she was sent home from a residential camp as they felt (which I actually agreed with, btu that's besides the point ) they couldn't keep her safe, and it was disrupting everyone else's time looking after her.

We did have a couple of comments today about not "medicalising" or "pathologising" things which didn't need to be, but it does seem like for a lot of you (and particularly at GOSH) that it's going too far the other way. Out of interest, would GOSH write the kind of letter that gets the exam facillites DC need? The Brompton did one for us the same morning (and that included several emails back and forth as they needed a direct request from DDs school). Do GOSH still see exam age DC, or have they handed them back ot local hospitals by then?

I think GOSH just don't want to get involved in the education system. Maybe they've been bitten too many times by people expecting them to back up reports with appearances at Tribunals etc.

They are a tertiary level hospital and so can't support children in the same way that local hospitals can and they have no idea about the schools and LAs they are dealing with so it is safer not to get tied up in any of that. Follow the medical model of disability, blame it on the child/parents and duck out.

However, whereas I understand their reasoning, I think they need to realise that the expertise to support these children is not out there locally and so their advice/intervention is required and is usually followed.

Midnight -an interseting question about whether GOSH will suport writing a letter to help with exam procedures and timings....I guess ask them.

nev

Im expecting the same sort of battle when we go in few weeks .Ds probably has a chromsome issue behind his problems and Gentics think the low muscle tone is caused by more than EDs .so not something thet can be fixed

But shall see but my dealing with GOSH do not inspire a lot of faith in them as it stands

Anyone got any appointments this week? We have just got the clinical psychologist for ds, next week he has got orthopaedic surgeons at Royal Orth in Brum.

Hope everyone is ok?

HI ALL finally went to pead app this morning ...HE LISTENED TO ME AND BELIEVE ME !!!!! he did not say lets wait and see at..sent ds off for blood,basicly all the boxes were ticked on the form.and he wrote extra..in doctor scribble code so not sure what for .Poor love had 5 vials of blood on the tray with diff lids!!!!! I felt dizzy loking at them so don't know how he felt!!!

Doctor was talking about vit D deficiancy? which i am sure i have come across before..was it on here??? scrolled back a bit but thought it might be quicker to ask !!

He thinks comm pead and ed pysc need to be involved and defo OT..so hopefully by the time ds starts yr4(!!!!) in sept things will be in place.

So just have to keep waiting for results and more apps but am feeling positive tonight which basicly means i am hoping some thing IS "wrong" with my child so i can get him the suppot that he needs..which only you lovely people would understand

That is fantastic news bizzey, well done you, and well done paed too! I am not sure about Vit D deficiancy, I will have a read up myself, but I don't think it has been on here.....correct me if I am wrong

How did having the blood tests go? Last time my ds had to have them, which was about at the same age as your ds is now, he had a major melt down at the hospital, it took 6 ish nurses faffing, before I told them to just hold him down and get it done, which I hasten to mention he did not actually even notice happening...all fuss and noise my ds! p

bizzey I know what you mean about hoping they find something wrong.

We have genetics next week (for 2 hours, what fun) and physio for DS3.

Oh yes bizzey as ellie says so understand what you mean!

Where are you going for the genetics appt ellie?

[Sparkle] and all...blood was ok!! I sat on a stool and he straddled(?SP) me and his arm was out of sight.. to him and me!!! It was behind me and we had a lovely cuddle(he is not into cuddles!!!)

RE vit d..must of read it somewhere in my google research as i was not surprised or shocked when he mentioned the word and felt i knew about it ???

Poss infomation overload as could not remeber what site but knew it had come up somewhere.
have just googled again...it is mentioned in an EDS info link along with calcium probs.

Might not be a deficiacy but an inability to absorb it as his diet is good(well i think so and his brothers are ok!)

Now.. google brain overload going into melt down here but am i right in thinking collegan is needed in brain messages and function.. been on too many sites to double check but am sure i did see collegan on his blood test form ?????? can they test this in blood or am i loosing the plot

Well done bizzey

Good luck on the appointments everyone

Bizzey they can look at some of the muscles levels Ds has abnormal one which is pointing towards something else that he has alongside the EDS

Never heard about vitamin D

Can I ask a personal question but how many of your dc need or receive counciling support

I'm beginning to think GOSH is not right place for Ds3 he has no difficulties with being upset by it all , he is not lacking in cofidence physically either and will try everything he is very game

So it dies not seem to be affecting him emotionally at all . His problem is that no matter how much he try's he physically just can not do some things

I googled Vit D and eds last night, I can't find any papers or medical jouranls which talk about it. I found plenty of sites where individuals had posted they had eds and low levels of vit D ? low absorption of vit d, but nothing official. I did also find a website, run by a vit supplement company claiming vit d supplements could cure eds ...wish there was somewhere one could report such places!

Bearing this in mind we do know that gastro issues are related, and so it is no great leap to suppose that some absorption issues may be present.

Bizzey as far as I am aware they can not do a blood test which is related to collagen....so I wonder what they are testing for? They tested ds for a variety of things, full blodd count, inflamatory markers, thyroid, coeliac disease and other bits and bobs, mainly to rule out other factors for his weight loss. Everything came back normal, so they decided his weight lose was pain related. Having said that he has stabilied and even put some on in the last year, so that is good.

THC - my ds has an nhs clinical psychologist. He has real issues with avoidance tactics, and refusing to communicate with drs, and is quite depressed about pain levels, and limitations due to eds. It was only a year ago he was talking about suicide, and he is much better than that now, but he still has his moments. GOSH service is probably exactly what ds needs and he is what it was designed for, pure eds hypermobile type ....etc....used to think it is a shame he couldn't get there due to our crap (sorry ladies) rheumie, but the more I read about your experiences, I think lucky escape. If they tried to insist I was not present during sessions, ds would have an absolute meltdown or monumental proportions.

DD2 is starting a short course of counselling (so the psychotherapist can decide what she actually needs, if anything), but that's via CAMHS, and is because when she gets stressed (with friendship issues currently, but last year because of not being taken seriously by doctors) she has had some weird and wonderful coping mechanisms which ended up with (some) psychiatric intervention. It's taken since last August to get this series of sessions set up mind you.

The teen clinic at UCLH says they do "diagnostic and therapeutic advice" in a "one-stop multi-disciplinary setting" and there's a "holistic approach", so I presume that includes counselling along the way.

I'll let you know after our appointment next month how accurate that is

Sparkle

There is something new they are looking at called tennyson x deficiency but tests nor available on nHs yet . Proffesor pope wants to test Rio once it's available

It may be to measure muscle mass

Yes GoSh seems more aimed at looking at pain levels and pain clinics etc

Am just curiours because in lots of ways he does not struggle with the Eds emotionally and socially like others dc

Whether it's because never been any different or what ever else is going on has protected him from realising mentally what it means to him

sparkle just the local hospital for genetics. DS1 and 2 have been bribed with the park if they behave .

The HV said she would refer DS2 to wheelchair services but today we got a letter from childrens integrated therapy services saying the referral has been refused. So I've found the number for exeter mobility centre on the net and I'm going to self refer at 1:30 when their phone lines open. Argh, why does it have to be so complicated.

THC forgot to add DS2 hasn't needed any counselling etc but he is only 3.

Ellie - did they give a reason for refusing the wcs referral? I am wondering on what basis they refuse before they have assessed.....

THC - when is the tennyson x deficiency supposed to become available on the nhs then?

Midnight - inmteresting description of the teen clinic...I wonder whether it will live up to it I am very interested to know how it goes cos I will ask to be referred to UCHL rather than GOSH if do for a second opinion for ds.

Clinical psychologist was an epic appt...we had tears, we had attempted self harming, we had anger, we had sibling jealously about dd1's lack of having eds, we had anger at drs, we had grunting and monosyllabic responses, we had very intricate disraction techniques....I am exhausted, so god knows how he feels.

Hi everyone, We have had a horrid week. My MIL passed away a week ago.

Then yesterday we had an appointment for DS regarding weight (he also has a vitamin D deficiency but this is due to CF not hypermobility related). They Are sending him for tests for coeliacs and diabetes. We calculated between his night feeds/bolus/day supplements and normal food his intake is closer to 4000.

I mentioned the collagen from BJH affecting weight but our dietician said it wouldn't make a difference.

We are in receipt of HR DLA and CA. We are also supposed to start genetic counselling (CF related) and my son is due to start seeing a psychologist for needle phobia - again related to CF. However DS is beginning to struggle socially and is very angry regarding enforcements of any treatments now, which is making daily li difficult.

Sorry all of my experiences are less EDS based and more CF based but it is really interesting to read others experiences.

Reindeer

Does Ds spend any well time as such with other dc with Cf ? . Rather than in hospital and forgive mr if you already said does he have a port under the skin for injections etc as we find this helps dd rather than them stabbing around trying to find a non existent vein

I'm waiting for dd to start really undersea ing what her lung and immune issues mean for her and I suspect she will need counselling at some point

It may be worth point out to dietcian that it dies affect the bowels as that's a muscle and it can make food past through quickly so not absorbing it

Ellie wcs sadly have clamped right down and now say if they are mobile indoors you do not qualify for help same for adults if we can use a self propel indoors then outdoors does not matter and if you can walk with crutches or frame indoors then no chair

The test may be available next couple of years on nHs

Sorry Ds is having hard tons :( , we could do with getting them all together do can spend time with other dv with the sane condtions

reindeer condolenses on your loss was it sudden or expected..not that it will ease your pain

all interesting comments about counciling...we have had none but then i suppose i am still only at the begining of my journey!

I have tried to explain to him as much as I can, why I take him to lots of appointments but he has never questioned it too much. BUT he did make me sad this morning when he asked"..now that they have taken that other blood out of me ,when are they going to put proper blood back in me so i can be the same as everyone else and not so tired and sore"...!!!!!!!!!!

It goes back to the label issue we talked about earlyer...untill he is "labeled " i dont have any propper/truthful asweres to give him or his brothers..who are lovely and helpful ,but at 9 and 10 are still allowed to have little strops over my different treatment to him.

IE "you love him more than us"...and the rest that I am sure you can all imagine !!!!!

When I say"different treatment"..I dont mean disipline...he will still get told off for swearing which they all try to test the boundries for at some point in school life!(poss another thread ..but how can some parents be so relaxed on their childerns language..mine have come home from school with words I DONT EVEN KNOW let alone say!!!!!!)

I do excersises with him and the other 2 (for fun) but obviously spend more time helping and praising HIM.

Will be glad when i get next app and results..though not expecting it till after the hols.