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.

hi and no wheelies , i took my powerchair and one look at those Hills so glad i did . funny though as couple peiple wanted take pictures of the chair as stormed up the hills.

Bizzey they may well contact gp if anything is found sooner but Gentic test normally take 8-12 weeks

Ellie Yay on the hat parade win , and yes burnt out im feeling like that to

simpson

I have 4 dc all with eds .Ds1 dyspraxic but at collage doing ok no major issues bar handwriting .Ds2 and handwriting .DD i thought got away just with teh dam handwriting again but seems her knee caps are a problem

And then have ds3 who is younget and causes major issues for him , walking and using his upper body so is only just starting to write his name sort of and he is in y2

Ellie untill recently ds needed liting on and of the toilet party due to eds and partly due to his small size and he has fallen in few times he now just sort of percehes there .We have a step at home to help him

holiday wise hinestly you still do mange it it becomes normal

Am busy packing for our GOSH stay and will feed back though am feeing a bit meh about it

@ no wheelies!

Holidays and even evenings out our possible (she says not remembering when we last had either one) but sometimes you just need to adapt things a little, or think ahead a bit more than perhaps you would have to otherwise.

As far as toilet training goes, it may take longer than "normal", so be prepared for that, as for the potty, if your finances stretch to it, you could buy a stander for the toilet and a special seat which has a toddler seat built into it, then he won't have to get down to the ground level, but just sit...we have one of these and it was a godsend for my "normal" dd2, I didn't know about them when ds was little.

bizzey - hang in for those blood tests, you will get the results eventually. ....promise.

www.homebase.co.uk/webapp/wcs/stores/servlet/ProductDisplay?langId=110&storeId=10151&partNumber=8331623

link to an example of the toilet seat I was talking about.....ooh my life is exciting....I knew just where to find it.

sparkle i may just buy one now for ds 3 he still needs to perch and his feet dont touch anywhere near the floor

Thanks sparkle. He can't sit on a proper toilet even with a seat without help because he is too short even with a step, that's if he can get on the step and turn round without falling off. Even then, by the time he gets up the stairs to the bathroom he is so slow he would have wet his pants by the time he got to the bathroom. We have got a potty chair at the moment, he still struggles but it is easier than the toilet. Another thing to panic about for when he starts school. DS2 is sporting a big plaster on his head today from when he tripped over a rug at the inlaws house and hit his head on the wall, blood everywhere. I'm going to apply for the mobility component of dla this week as surely all the accidents he has count towards pain when walking as well as the pain from EDS.

Someone told me yesterday that the bus I normally use to take DS1 to school is being taken off the route and the prices are going up again. I really hope this is just a rumour or scaremongering from the bus company (they threaten to get rid of buses sometimes so they make passengers grateful when they decide not to) because otherwise we will be even more screwed than we are already.

Hope everyone is ok and had a good easter.

Hmm just had initial quick assessment and the Physio seems to think there is more than EdS going on it apparently would not explain the gross delay from birth and the other issues

So were see

DD has problems getting on the toilet too but that is due to her falling down it once she is on it, rather than her getting on it in the first place. She totally refuses to use a seat on the loo

We have her 2nd OT appt tomorrow, I just hope there are not any more shocks tbh.

Does anyones' DC take vitamin supplements to help them???

well, DD1 is quite happy - she had to go to her (uni) GP as the nurse wasn't happy prescribing the pill to her because her BP was skyhigh on all three occasions she's seen her (turns out she has White Coat Syndrome), and although she "didn't get round to telling him" about her almost constant joint pain, he had heard of EDS and PoTS when taking her family medical history. So at least once I have forced her through threats of not paying her allowance convinced her to go and talk about it, at least he should be prepared to consider she might need some further investigation, rather than a "cut down on the ballet and trampolining" suggestion.

DD2 has been a lot better recently - not being at school and getting caught up in friendship group issues has helped - but I'm now starting to worry about her ankles holding up for next terms DofE expeditions - recently she's been turning/mildly spraining an ankle once a fortnight. School are mostly concerned about her hitting her head on a rock if she faints and the impact on the rest of the group (they seem oddly reluctant to have an adult accompany her group, but I know they've done it for other DC). But she seems to be a lot better at managing her reactions to stress and shocks, so the number of psychogenic faints has dropped right down. Which helps my stress levels immensely .

How are the chocolate levels with you all? We've been quite restrained this year (both DD1 and DD3 were away last weekend) so I'm feeling moderately healthy for once .

THC have they elaborated on the other symptoms (sorry hope that's not too nosey) how long are you going to be at GOSH. I hope you get some answers and get home soon.

simpson good luck with the OT appointment today. Check if there are any extra courses through the hospital such as hydrotherapy etc, as the physio can (and should) refer you for these courses. My DS has fat soluble vitamins but that is mainly due to digestive issues which are not connected to EDS.

midnight. It must be scary when DCs get older and take control of their own health. I worry about it, but it sounds like your DD has her head screwed on and is getting somewhere. We got lots of chocolate for Easter - do you want to share our massive collection?

No news here (I'm hoping that's a good thing) got a letter confirming hydrotherapy will start but no dates as yet. We are still waiting for a few appointments and we had MILs funeral yesterday so it's been very busy here anyway. DS working well on the new kinnect (hospital recommendation ) but he is dancing away on it and doing lots of exercises anyway. I'm hoping that this is a good thing. Still getting unexplained pains in his legs though?!

Reindeer

Hope yesterday went as well as it could of .

Hydro is fab ds3 loves it nit like hard work at all .

Simpson how did Ot go

Midnight really hope Dd gets to do her D of E

Sparkle how is Ds

Hmm

What I'm finding with the rehab is that there's very little feedback . Nothing day to day . I don't even know what excerscie they are doing

First day they tried to take Rio but he was not having that so I had to take him up . After that he has been ok as has charmed one of the physios to be hid new best friend

No weights yet as they feel not approaite for Rio

They reckon it's not just ligaments but he seems to be lacking in a protein for his muscles . Hoping neuro muscular get in it's with his history making them suspect and they agree he's not lacking in confidence from trying new things it's more that he can not fo them no matter which way he try's

But from what I have spoken to other parents and the older teens they all rave about it and can see a difference in themselves and certainly seem more confident in what they can do

Apparently the pain clinc is very good they have a parents omit one where can talk openly ANC one where they give the dc coping ideas . Ds3 won't do that one as they feel he is pretty happy and deals with it in his own way and I agree with them

Sparkle suspect your Ds would benefit from it may be worth pushing for referal

THC DS2 has gross motor delays as well.

What do your DC's do for PE and sports day? The HV phoned yesterday and started saying that DS2 shouldn't be doing PE because it will make him more tired but I was thinking surely there must be something he could do so that he is included. With sports day she said I should keep him home that day so he doesn't have to do it but there must be something he could do that doesn't involve running.

She also wants him referred to an orthopaedic surgeon but I'm not sure why. I think it was something to do with orthotics. By this point she had waffled on for ages, DS1 and DS2 were fighting and ds3 was trying to squeeze under the sofa lol. So I couldn't really hear what she was saying and I just said that was fine without really understanding. Does anyone know what they do?

THC - I am intrigued by the delay from birth of gross motor skills not being related, because ds definitely has that....maybe it is a scale of problem issue . I have long suspected that the pain clinic would be very beneficial for ds....it is just getting there.

Ellie - my ds sees an ortho surgeon but that is due to his eds spinal issues, which are quite severe. I am not sure what they would have to offer general hypermobility....to be honest they are a bit rubbish for ds' severely hypermobile spine. I would not be in favour of removing your ds2 from sports and sports day, all children should have equal access the the full curriculum, and it is up to school to accomodate his needs, and make adaptations where necessary. Having said that ds' previous school refused to make any adaptations, and isolated ds and destroyed his self esteem in his physical abilities. They refused to adapt pe lessons, and told him he should sit out with a clip board and record other children's achievement and despite his request they made him run in front of thbe entire school and parents in sports day, he fell, disloacted his shoulder and had to be sent to hospital...he was soo humiliated...just two of the many reasons I moved him to a new school, which adapt pe beautifully so he can join in, and changed everything about how they did sports day so ds could take part and not be different....inlcuding inviting his nhs physio to watch him so she could see him being supported and celebrated. It is all down to how the school manage the situtaion, a good school will be able to use pe to develop his skills and not tire him out, and use sports day as a celebration.

sparkle how did the school adapt sports day? They managed to do a reasonable job in KS1, so differences didn't look too extreme, but I have found so far in KS2 that the differences are huge. Its the first time that his peers have asked why he runs funny and why he can't keep up. Parents gave me some weird old looks too.
I would love some ideas that I could take to the teacher that organises it as I know she takes things on board and will help if she can. What with all the olympics theme going on, if the school can't get it right now, don't think it ever will!

For sports day - They changed the activities which his age group took part in, so they didn't do any straight running races, but did more obstacle style races, they used large equipment for everyone, so his large stuff didn't show up. They sent home all the activity equip, including a space hopper with us, for two weeks before, so he could practice at home, and they altered the layout of the day, so to reduce the number of parents and children watching at any one time.
Pe - Type of activities and the style of the equip makes a huge difference, for instance, only using large sponge or soft plastic balls for football, reduces impact issues, using over sized hockey sticks and baskets which go over the ball and allow easier dribbling are great too. They cahnged the way they used the gym equpiment to a more free style style so ds could select ways to move which didn't hurt. They also give him the responsbility to say when he is tired or in pain, he can quietly sit out if he chooses to, he doesn't have to ask and so draw attention to it....that kind of stuff. PDSS made most of the suggestions, they were fab.

auntevil - Here are some links which might help give you some more ideas www.teachingexpertise.com/e-bulletins/supporting-pupils-in-pe-and-sport-2795

www.flaghouse.com/default.asp?Category=Athletic&AltTab=none&srccode=902080 this link is amercian, but it might give you some ideas for what is possible.

www.special-needs-kids.co.uk/index.htm this might be a useful link for others thinking about what is available to help.

The first link was pretty much how things were done in KS1, but things seem to have changed in KS2 and have got a lot more competitive.
The races at sports day were at an arena, on a pukka race track, and done in a formal way - with adults in the grandstand watching - so no hiding place.
Even though they were split into teams, how does it engender team spirit if your team has the child that is going to effectively make you lose?
PE is handled much better, although, his teacher does rather like doing pilates with them . Knowing that DS1 struggles to follow a simple instruction to put his hands together - palm to palm like a clapping position - beggars belief at what positions he might find himself in. My only consolation to this is that a couple of the 'lads' in the football team are truly atrocious at this as well
I hate the idea of him not feeling included - and will always challenge the school on this.
Must admit, next autumn term DS1 is going on one of these school activity holidays. I'm hoping that in someway it might be a steep learning curve for the staff that are going as to how much input is required on a daily basis
I will be reminding him (and the staff) of my brothers office quote "maybe I am not an under achiever, maybe you are an over expecter"

Ellie

Hmm slightly different as Ds is in speech base So only 8 in class for pe and he joins in , did sports day to hut very low key lots of rest . But yet again is easier as only 8 and teacher / ta and s&l therapist helped out

Ds did see orthopaedic but they discharged him assays nothing they can do fir him.

Orthtics is sometimes given if foot position is bad but the referal is done by Physio

Hmm guess sin e Ds is y2 is easier if be ones completive in junior that could be a issue will have to see how new school September cope .

Sparkle if your gp is good the Gp can do the referal direct to Gosh , infect is quicker

As for the from birth not being EDs Think more it was the blood test that showed it's not just the ligaments it's the fact the protein that makes muscle is lacking

So he is still hypermobile but there's a limit to what you can infact do about it . No idea what happens next bit have weekend off and no Physio till Monday afternoon . Then pain clinic for dc after . Then there's one for parents on the Tuesday morning while kids are in clinic so be interesting will report back

Hi everyone been busy for a while so disappeared. Am jumping in as we have just been refered to orthopaedic specialist (same one that treats dd for her hips (ddh)). Couldn't wait for next paed appoint so saw gp re ds. She advised that ds will probably need physio but wants a clearer picture so will refer to orthopaedics first and they will refer on where needed.

Really dreading the whole sports day thing luckily ds is only 4. Keeping note of all your links sparkle as they are fab.

Hi

Hope everyone is ok and coping with the Easter holidays, am glad to be sending DS back tomorrow

Unfortunately DD does not return until wednesday

Her OT appt last wk, went much better and rather than wait 6mths for a referral for physio (they are too busy to pop into her OT sessions) I have been told about one of the local childrens centres doing a drop in session (although you still need to make an appt )

Sooo our appt is 27th april, but OT has suggested I ask about shoes as you can get them on NHS, is this true???

OT wants her pelvis, hips, knees and ankles checked. She cannot really push her in OT until DD has been checked by physio (which is fair enough).

Also the OT is going to ring DD's nursery school later this week, about going in to see DD/her teachers early next week whilst she is at nursery, which is all good

sometimes you can get piedro boots on the nhs,but a lot are cutting down on them as they argue that they are no bette rthan a good pair of boots and often point you towards kickers

simpson glad Ot are being proactive

Hope everyopne is doing ok .no rehab at the moment as ds seems have some weird bug over the weekend where he cant keep food down but drink etc no problem and we ended up in UCLH and have to say i am very impressed with theur care