Here some suggested organisations that offer expert advice on SN.
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EDS Hypermobility 3(826 Posts)
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.
THC - my son was told to find his 'happy place' - he had to do this at the pain clinic at age 7! It's Lego Land, he says - where you can take off bad legs and put new ones on that don't hurt.
It's all very well, but when they are going into shock because of the pain, the 'happy place' is bloody difficult for them to find, and its pain relief we need. We're supposed to practice 'finding the happy place' when he is feeling OK along with breathing...................!
yep cars that says it all .Drs that say it have infact no clue what it is like to live with pain like that
If there is nothing constructive they can do, I'd much rather they were just honest and say so. I hate feeling that we're just being fobbed of with 'that'll do'.
Well done Ellie on starting new thread!
Ds's clinical psyc is good, she doesn't suggest "happy Places" but talks about relaxing the muscles so as not to increase the pain being felt. His rheumie is a strong believer in "happy places" though, and if he suggests it again, I will be directing him to an alternative
world of pain "happy place"
Thanks for the wheelchair advice. I think I need to go and find a shop and have a look, taking your advice with me, and see what is what. I will do it first without ds. It has to be able to be folded up and fit in the boot, so that will have to be the first criteria.
Double - treatment....although not that surprising
Luckily in a roundabout way . Ds3 does not often complain of pain but I dis cry when it was pointed out to me that he probably is in it but as always had a level of pain never known what it is to be pain free . I felt like a crap mum that day
But fortunately he is a happy child so easy to forget
Cars seems nothing constructive for ds3 been told basically go away and get in with it your just Havd to mange it which is disheartihg when you think you seeked people out for help and they say no to complex for us .
Yet they expect parents to cope learn
Sparkle only thing is that makes heavier . Tip measure Ds from back of his backside to under his knees . Then again from under kneels to his feet do them while he is sitting then 3rd measurement with him still sitting measure across his backside or hips which ever is wider
Will give some idea of what size you need, once got ghat eBay is often a good place to look
Bugger that your not nearer
THC - what you are saying is exactly us - you're complex, we can't 'cure' you, so we'll let you come along for the ride, but don't ask too many questions as it makes us uncomfortable. We were also told the reason we get shock symptoms with the pain is due to him feeling it all the time - so therefore 'normal' for him, but when it gets unbearable his body shuts down - nice!
Sparkle - our blade will only go in 'nev' - a Fiesta, if I take the wheels off and the foot plates - a real pain - but it will go in dh's Picasso complete.
Need to measure boot to get dimensions for that too, don't want hassle of having to take wheels and footplates off even if only using it for days out etc.
Having a nightmare preparing for AR of Statement here - anyone have any suggestions, am surrounded by paper and reports and files!!!
Why is everything so effing difficult?!!!!!
Sorry, but I know you understand, its all a bit much today again. xx
The wheels should be quick release so does not take to long . Foot plates often are just click on taking them of helps reduce the weight
Oh and I would seriously Reccomend non puncture tyres
Big wheels at the back make it easier to push. DS2's wheelchair will be like that for this reason and because occasionally he might want to self propel.
I've just been attempting to fill in the medical forms for school. I normally put down "hypotonia, hypermobility and gross motor development delay" on forms because I get fed up of people saying "oh I've got that, look I can bend my finger backwards, that's not a disability is it?" when I say he has BJHS or EDS. On the form there are separate (small) boxes to write down disabilities, special needs and medical conditions. I'm not sure which category those come under and I could write an essay on how they affect DS2 and still not cover everything.
Ellie - I usually just do a 'see attached' and give them the essay that way along with an explaination of the difficulties - if you don't they'll just dissmiss it anyway.
THC - we had pneumatic tyres to begin with - never again as I was allways worried we'd get a pucture - have solid ones now, and having big rear wheels is great as it allows them some independence when they are out and about. Usually means he wheels himself to the Lego, nearest toy shop, sweets.......!
So I need to make sure of the following:
Collaspable and will fit in boot
If wheels and foot plates have to come on they are easy to remove and fit
Large wheels at back
Not too heavy
Anti tip mechanism(?)
Thank you all x
Ellie I write Ehlers Danlos Syndrome and then attach a list of physical problems, how affects learning, how place needs to make adaptions, medical emergency info etc.
And adjustable so grows with him
Yep I go for anti tips bit try get flip sways as it's painfull if he tips self to far back and goes flip . I may have done that once or twice in my chair
Thanks sparkle and cars, better get writing my essay then. We've got the adaptations sorted, just need to make them understand that he gets extremely tired doing not very much and no it's not the same as when other children get tired. DS2 had one of his stay and play sessions at school yesterday. He was so tired he was hyper. The teacher was the one who is a lovely teacher, good at teaching but clueless about SN watched DS2 running around like a mad thing while I told her about his wheelchair. I think she was surprised that DS2 is getting one and they didn't just write "mother is an overprotective loon" across his notes. Of course today DS2 is lying on the floor watching cbeebies because he can't do much else.
Ellie - 'boom and bust' our consultant calls that - but its so hard to say 'stop now' because tomorrow, when you are young seems like years away. We pay the price every time, but have now accepted that a day of fun means pay-back the next week, and so we just spoon in the pain relief and go with it now.
Hello long time, no see!
Just trying to catch up with everyone now I am borrowing a laptop that works. Saw that you're now on the 3rd thread, that's amazing. I will try to update you all on what's been happening with dd since last time I posted, but will just say that DS has now been diagnosed with hypermobility and dyspraxia.
Sparkle - we had a Blade Plus wheelchair for dd. It was purple and lovely, but as the footplates didn't fold, I had to unclip the wheels and even then it was still quite large to fit into our car. Now, because dd is so tall she has a teenage/small adult size wheelchair. It folds down much smaller. Some places don't supply spoke guards to stop little fingers getting caught in the wheels - our local PCT doesn't, but as dd can't self propel very often it isn't too bad. Also, watch for the anti tippers as they b. hurt when you walk into them when you're pushing the wheelchair!
My cars - I so know what you mean. Not with the hypermobility (DS1) but with diet (DS2 and 3). Both are gluten and dairy intolerant, but not dx coeliac. The result is 'evacuation' after eating of 20/30 minutes and stomach cramps. So we have times when they can just eat what they like - and suffer the consequences. Like me, they will soon come to realise that you really have to want something to suffer the consequences. But it also means that they can feel just like their friends.
DS1 was in A&E this week, with the same ankle problem as last time. I did get the feeling that the DR was almost less interested because he is hypermobile - as if 'what do you expect'. Not that he wasn't kind, but just 'hello again, you know the routine' . So I felt quite for DS. Although you could tell the parents that have frequent visitor passes, they come prepared for a long wait!
tried to post a long post on the last thread, onyl to discover it was full .
Anyway, info for reference for anyone in the future - Dr Ninis at St Marys has a seocial interest in PoTS in EDS and runs a clinic twice a month on Wednesdays. Her secretary is very helpful, as are the paed outpatient admin people. Dr N is listed under general paeds rather than rheumatology or Paed syncope clinic.
DDs appointment will probably be 8th August (Dr N is adding in an extra appointment slot for her ), so I'll review the clinic afterwards.
Does anyone else/DCs have PoTS as part of EDS, or is it just DD? I've found PoTS-ey people elsewhere, but none of them seem to have it as an EDS symptom, and I'm not sure if there would be any differences in treatment/prognosis.
DD2 is off on DofE expedition this weekend (with DD1 tagging along in case she faints, cracks her head open on a rock and needs a ambulance - the teacher in charge has been very throrough with his H&S risk analysis )). I'm following the "if I don't hear from them, then she's fine" school of parenting, so currently she's survived the first 4 hours!
Yes we have a link to PoTs too - and the genetics team assured[?] us that there is a link to EDS, but that there isn't a clinic just for children with this.
They offered us Prof. G and Prof P. together [we see them individually at the moment] as it was 'interesting', but am feeling a little p'ed off with that label at the mo and need help rather than chat!
Our 8 year old presents with vasovagual faints, tachicardia, hot/cold with pins and needles and itchy skin amomgst others that we are told are all part of it. They put it under automonic nervous system dysfunction to tie in some of his other dx's I'm told. You get to a point where you're not sure what symptom belongs to which syndrome as they all overlap!
I'm thinking of getting our son a 'medic alert' bracelet as I worry when he is away [not that he is much tbh, as we Home Ed] - does anyone else use these at all?
Nev - Dr N at St Marys may be the missing link for children (once you hit 18, then it's Professor Matthias' clinic waiting list - around a year at present I think ), but I'll reserve judgement till we've see her. The Brompton weren't especially knowledgeable about PoTS (although to be fair, it may just have been the locums we saw), and were very dismissive about DD having EDS. Has your DS had a tilt test? DD managed three different types of faint during hers but the nurse there was incredibly helpful.
Re medic alert bracelet, DD will be getting one now that we know what she's got (a random "she faints, it's OK" isn't really going to cut it with medical professionals ), but the difficulty is knowing what to put on it. I understand from people on the STARS discussion list that PoTS doesn't work very well as hardly anyone has heard of it, but VVS isn't the same, as DDs faints aren't just on standing up, it can be up to 10 minutes later, and obviously the tachycardia needs to be in there too. I'm going to ask Dr N when we see her what would be the most helpful terminology to use. Also we decided DD should have a bracelet rather than a necklace as I had visions of her strangling herself as she fell over....
HI ALL ...gosh absolutly no advive or help realy for what you are going through regarding wheelchairs but....
In in my new car i have to take my dads foot plates off to go in the boot and found it helpful to label them left and right !!...
.Might sound silly but when you are trying to do it quickly you havent got time to do "trial and error"(espesially when the old man is trying to get out of car by himself LEANING ON THE DOOR HANDLE !!)
Or is that just me not seeing the difference between the two foot plates !!!
Nothing to do with what you are all going through but i thought I would share some news with you all ...
DS put some shorts on today (? from last year ) and HE COULD NOT DO THEM UP !!!
I had to adjust the waist band by 6 button holes each side !!!
He is still skinny ...but he must be growing
I had the school nurse on the phone asking for permission to to do W/H measurments and when i told her of his confirmed DX and that pead is not worried about it as he goes on "red book "percentiles of W/H and not BMI she became a different person and asked me to spell his DX'S and wished me well (she is leaving the area in July)
Wish I could help you all more on giving advice ... I seem to always be asking and not giving
Midnight - ours was confirmed whilst having s video-urodynamic test - after fasting and then going on a tilt table, he went into faint from laying down to being brought to standing. He had also just had cardio tests for his fainting episodes. They put all this in a pot with his other autonomic dysunctions and they and genetics came up with PoTs!
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