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.

Sorry if I am confused...it happens alot, but THC have you name changed?

eillie my ds cried and whinged a lot, and still does, I think it is due to a combination of both tiredness and pain.........not what you wanted to hear....sorry

Freak - I am not sure about funding, other than dla, sorry. Mn did launch a section in special needs about useful equipment...I don't know if it is still going, othersiede post a question under sen children and you will get loads of support. Interesating you say your ds is light sensitive, my ds is too, and the optician said his pigmentation is virtually non existant at bthe back of his eyes, even for a blued eyed boy which he is (mine and literally)....I wonder EDS again?

The Paed rang me today, his ECG looked fine, but she s going to refer him to cardiac specialists, and get him an echo to check for mitral value prolapse, she is being thorough, which is lovely. I am sure it will be fine, I think it is blood pressure and exhaustion related. Must pull dinner together now, but before I go, is anyone else feeling extra achey, unsettled and with a great sense of forboding...or is that just me ?

Sparklerainbow, reading that made me feel so bad for you, and I for one can identify with what you have said, that is why I often said nothing about problems I had, and still don't mention my physical problems much, it makes the burdon harder to bear sometimes when you get no support for a disability.

I have to say I have spent much of my adult life with friends and family looking at me sideways abiout this condition, even dh now admits, after nearly 18 years together, that he didn't get it in the beginning, and thought I was just a hypochondriac. That is something I find very hard to deal with, for ds too, in some ways it is an invisible disability.

Sparkle, thanks. At least I can say to my inlaws that there is a reason for it when they moan that ds2 is whinging again.

Hope your forboding feeling comes to nothing and that your ds's cardiac appointment comes through quickly.

Hi sparkle yes it is me THC need get on laptop tO change back .

Ellie ds3 whinges because he Is tired out .

Sparkle glad Ds ECG checked out ok but glad they are looking more into it . How is school going ?

Freaky there's a few places that yOunmay be able get funding from caudwell charity being one of them .

Intresting what you say about Ds eyes . Ds 3 has been seen by the hospital eye team and he is light sensitive but turns out what I was not sure if squint is a very definte one it goes out though not in and in one eye he has 75% vision but no point glasses as he said won't work for him due to eds type

He is going to do some more reading and contact mooorefields but at some point he will need surgery which because if eds is a problem in it's self

Oh and Ds loves the hydro but they have picked up problems with using his arms he keeps them tucked into support hid upper body

No news yet on when from gosh been almost 3 weeks am wondering if to call as I need as much notice as possible due to arranging childcare . You reckon should call them or wait a while ?

Yes Ellie, the whinging is probably down to tiredness, possibly pain but it is certainly hard to distinguish when they are little.

DS2's physio called yesterday to see how we got on at the paed. The referral to wheelchair services is going through and she's wondering whether we would benefit from an appointment with the clinical psychologist to help us determine what is pain or frustration and find ways of managing his behaviour (Ds2 throws himself around etc when he's having bad day).

Could I just ask how HM affects your DC's? I have looked at the HMSA website and read some of the messages on here and I don't think Ds2 is too badly affected, which leaves me wondering how much intervention he needs and what the long term outlook is. I am also unclear as to what can be deemed HM and what is EDS (I've read extensively on both and remain none the wiser!).

FWIW, ds2 is 3.5, bendy in all joints but it's his lower limbs that he suffers with. He has femoral ante version and his ankles, which are the main problem, go in all directions. He also has very flat feet for which he has had insoles and we've been advised to keep him in walking boots to give good support.

In all other respects he is very much an NT child with a tendency to run around like a lunatic with his peers but requires a rest every afternoon and often a sleep between 2-4 hours. He can't walk a great distance, complains he's tired and will start bumping into things on purpose. He swims very well and is able to be as active as any other child but lacks the stamina to keep up.

Thankfully he doesn't appear to be prone to dislocation and sleeps like a log at night, he also has excellent coordination which seems to defy the main symptoms of HM/EDS

Flamingredhead - I would chase GOSH, I think they have had long enough to get some idea as to timescale,and you have a lot to organise around it. I think a nice polite, telephone call, expaining why you are chasing them up is called for.

Ds is is ok, he seems very tired at the moment though. School is fab, giving him lots support, physio, fine and gross motor skill work, and beginning to push him academically...all of which is why he is so tired I guess. He was very achey this morning, but he seems to rally during the day, and just collaspes at hometime absoluitely shattered.

Interesting about the light senstive eyes thing......

Freak - To answer your question. I have EDS, as does my sister, although not as severely, we probably inherited it from my Dad. I have three dc, ds aged 8, dd1 aged 6 and dd2 aged 2. Only ds has EDS, he was dx very young. He was put into the hip screening programme as I was born with clicking hips, as a result of this they idenitfied that structurally his hips were fine, but extremely hypermobile. I then got him seen by Prof Grahame, who I was seeing at the time, and he dx EDS. Starting at the top, ds has unstable spinal vertebrae resulting in frequent dislocation and subluxation of his cervical spine (which risks quadriplegic paralysis and death), extremely hypermobile shoulders and hips in all directions and manipulations. He has hypermobile ankles in an upwards downwards flex, hypermobile toes and fingers and wrists. He gets pain in his knees and elbows but this is believed to be transfered pain from hips and shoulders (alhtough I am skeptical about that). He has a hisotry of subluxing and disloaction most of his joints. He has urinary incontinence, which they believe is EDS related directly and I believe is related to pressure on his spinal column, he has problems with severe pins and needles and numbness of his legs and feet, as well as a history of cramps. He is very thin, with possible pectus escavium. He has a fast pulse rate, and I suspect low blood pressure (I have neurally mediated hypotension so I suspect he has the same). He has quite good fine coordination, except when it comes to writing, but very poor gross motors, he can not ride a bike, or swim, or kick a ball (he has learnt to catch a big hedgehog ball in the last few weeks at school they practice everyday so huge triumph there). He struggles with being able to write, and has very low self esteem as a result, he uses a laptop or his neosmart pad at school, and has one to one support for scribing as well. His speech is slurred, although his language is actually excellent in terms of vocab, and he can make himself understood if you tell him to slow down and articulate. He sees a clinical psychologist as he has self esteem issues as a result of EDS. I am sure I have forgotten something.....but that seems enough to write about him as it is... sorry.

Hi all, finally got a few mins to myself so trying to catch up with you all on this new thread :-)

To comment about the link with ASD and hypermobility - I do know a child that has both. Whether it is an incidental thing or not, they do seem to go together in a lot of children on here too.

Nice to see that some of you have some good news to share, long may it last.

I can't remember from the other thread, but has anyone else had experience of having to see an orthodontist because of mouth/teeth problems related to hypermobility? Dd has a receeded bottom jaw, the jaw clicks and grinds and the roof of her mouth is very highly arched meaning that her top teeth are crowded and stick out. She is only 8, but our dentist thinks that dd is at risk of fallling and damaging her front teeth. She has done it before to her milk teeth!

A high arching mouth which is overcrowded is described on the US EDS support thread....I know your dd has Marfans, but I don't know if there is any info on there that would be helpful...I will find the link and post it.

Both ds and I have huge jaws, and loads of room for our teeth, so I don't have any personal expereince of that, but I do fret over himm falling over and damaging them....given that he falls so much I guess it is only a matter or time.

www.ehlersdanlosnetwork.org/hypermobility.html

Reference to dental crowding and high palete on this page, but no other useful info sorry

I was going to join EDS, the woman on the phone I think her name is Laura put me right off. She continued to say if you want to talk any time, you are welcome about a dozen times, I wanted to talk, she wanted to tell me she wanted to hear me, her behaviour was I don't want to hear you and I am telling you the opposite to make myself feel better about the fact I don't want to listen to you. She didn't want to listen or speak to me at all and put the phone down the first chance she got. It really upset me, and knocked my confidence, as I spoke to her about something EDS related I had not spoken to anyone else about, and I feelt even more dreadfull due to her response.

I won't be joining if that is the attitude of those running the group, game playing nonsense.

I am so sorry you have had that response, it is not on. I have not joined any support groups, I just talk on here, and to deepbreath and HTC/flamingredhead...they keep me sane. Thank you ladies

Hi Deep breath

Yes ds1 has this problem and he is considering some rather major surgery to fix his jaw but can not do till they have stooped growing .he is nearly 18 oh and yup he walked in to lampost and broke his front tooth in half !!! dentist had to build it up and cap it

Ds3 also has very similar problems he is only 6 so will just montior it .

tranquily

I have spoken to them yet she was not really interested plus she can not offer any advice on ds type 6 so decided not to bother with them

Not sure how good they are at offering support to anyone!

I have heard of eds affecting enamel strength and causing splitting teeth, just can't find the link to where I read it...!

Ah well it is not just me then, flamingredhead!

I suppose it is a group of volunteers, and not a well known or funded condition, so not much of a surprise really that they are not always able to support in a helpfull or usefull way.

Splitting teeth sounds just dreadfull, are your teeth splitting Sprakle?

The dentist a couple of weeks ago said I do have cracks running down my teeth, but my enamel is quite strong, I have no fillings at nearly 40. I think I have to be careful, and I guess it may happen....in which case I will save up and have them all capped!

freak to answer your question .Ds1 ,ds2 and dd and myself have type 3 .though ds2 it affects mostly his bowels is very sportry and no problem with stamina or cordination .

Ds1 it affects his cordordination and handwriting but no other problems .Dd it affects her handwriting but no other issues .Me i dislocate joints but am used to it now

Ds3 who has type 6 which is extremem hyoermobile plus other issues he is very very severley affected /.Affects his walking pace and how he walks affects his handwriting , his cordination his stamina .How he sits so his posture is badly affected speech is affected by the low tone and then the hypermobile jaw affected palte teeth , sco.loris .but even GoSH said he is unnormal though as he is hypermobile in every joint and low toned plus they susoect theres something else as well.But saying that he is on the wholer a pretty happy little chap laughs a lot

Sparkle chased Gosh up and seems wer enot on the list for November he is only calling people now and sai we would not know if we are on the January list till just before christmas but he seen no paperwork at all with his name on .
Told them no good i need to know this month if January so i can sort childcare also im moving January and accomidation said they need at least 10 weeks notice due to my disaBILITY

I am glad you have chased them Flaming...they can't last minute things like this, It is not fair, especially for you but actually for anyone really, parents would have to negotiate leave from work, child care for other children....not on on their part! I hope they heard you over them needing 10 weeks due to your disability... you are going to have to start quoting disability and equlaity legistaltion if they don't get their act together!

Are you moving home in January then? Are you getting some easier access house?

...we're still waiting to hear for January too...... seems 'don't hold your breath', is the answer - we're trying to dove-tail 3 appts in January with each other - doesn't look like that's going to happen.....!

Cars he told me yesterday he is still calling people to tell them its november for their course !! reckons we might hear mid november. I have oput rocket up his backside to get it checked and cofirmed.

Sparkle yes Im moving in January House rent is in poor state of repairs but he thought he was going to get one over the council when they approached him about a 5 year lease and allowing adaptions as they was struggling to find somewhere .He jacked the price right up by £500 a month !!!

Backfired a HA is building new houses and they talked wioth council and my OT and they are building one brand new and fully adapted for wheelchair user Can not wait to give him my notice and say oh good now find someone to even pay anywhere near rent i was let alone what you wanted

We're up at GOSH this week -if I get any info I'll let you know when we get back, need more notice than a couple of weeks, it's crazy. We already have appts for next July!! I'll let you know if I get any further when we go there. xx

yes please .I know he has not finished calling people for November but apparently SUe has not got round to catching up as of yet so ds3 name is not even on lisdt

Call Sue, if you think this will help. I know we are on the list, and I was told it would be January, but it's anyones guess it would seem. I'll do my best for us next week............

Have tried to get through but when ask for her at main number I get put through to a colleagues mailbox who seems not to return calls

November is full so figure goung to be Jan .When did you see her and she mention an intensive course lol trying work out if was before or after you

Hi we see her fairly often, and if not her than someone else on the team - we're at GOSH at least once a month. I'm trying to think when the decision was made to go back for Rehab - we've already had one two week block about 18 months/2 years ago. It could well have been late spring/early summer? Have you left a message for her to call you back? x

yes iot goes through to Ellie voicemail not Sue but am hoping someone gets back to me been over week since message .Hmm ok if you saw he rthen and she said Jan to you .We did not see her till September and said that so guessing it be more March or so i suspect .

first time we been seen only took 4 years .Did not like the rheumo guy we say though

sparkle how is Ds finding school has dd settled into it ok now as well ?

Araine how are you and dc

And hope everyone is ok