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EDS Hypermobility 3

(825 Posts)
elliejjtiny Mon 11-Jun-12 23:12:28

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 grin.

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.

yeah midnight im hoping when we finally get see Dr n she may be good at digging and knowing right people to see

She met with people at the Mayo clinic, so fingers crossed for you smile

Yay we have date for DR Ninis 11th June its private but don't care least wont be rushed and secartary asked LEA caseworker to email what they need to know re school placement as will cover in report

great news THC!

In other exciting news, just taken a phone call from local hospital paed physio dept who have received an urgent referral for DD, and can see her next week shock. I'm guessing the fact that we were seen at their A&E, and a sprained hip can't possibly be written off as "not in any pain" has helped us jump to the top of the 9 month waiting list grin. She's still not off her crutches, but can put a bit of weight on the bad leg, which is a bit better. The GP was happy that it was improving when we saw her earlier in the week anyway.

How is everyone else? Enjoying the better weather?

auntevil Thu 02-May-13 19:13:57

Absolutely b****y ridiculous that there is a 9 month waiting list for physio.
Apart from on going investigations with genetics, everyone is OK.
Interestingly, I contacted the school that I want to put DS1 in when we apply for secondary next year. The SENco has emailed me to suggest that I go to the meeting for SN/SEN parents of DCs joining this year so I can get an idea. I'm liking the sound of her. She sounds like someone I could work with!

Aunt that sounds intresting that they are pro active

Midnight yay oh physio . Fingers crossed they know about EDS and best treatment bug glad dd hip beginning to heal

Yup waiting lists bad here we was lucky ax already in system

babyjane67 Thu 02-May-13 20:15:46

hi all
well dd was sposed to have her orthopaedic app tomorrow morning but had fone call at3.45 today to say the specialist we need to see is abroad at mo&it was booked at wrong hosp so theyve cancelled it!!!!!!!!!!!
its been booked for over 3wks!!
got straight onto his secretary who said they cant do anything now til tues!!!!!!!!!!!!!
we are not happy!!!!!!!!!!!!!
we've got to go to a different hosp in the afternoon to see orthotics&pk up new boots&insoles
aaaaarrrrrgggghhhhh!!!!!!!!!!!!!!!!!

auntevil Thu 02-May-13 20:25:42

That's a classic, sorry we've booked you in at the wrong hospital. It gives you so much faith that they know what they're doing!

babyjane67 Thu 02-May-13 21:00:37

doesnt it just!!
i was so angry when i spoke to the secretary.especially when she said she'd only just heard too!!wtf???????
so thatll prob be another month or more before nxt app now!

Arghhh baby Jane that sucks

Must admit I'm considering going private for orthotics ( after holiday )as sick of the wait here its 6 months plus the. Get your boots then 8/10 week wait to pick them up

inadreamworld Sat 11-May-13 10:00:33

Hi can I join this thread? The pediatrician said my DD was hypermobile. She was two in April and began walking on her own a couple of days after her birthday. The reason she began walking is because some kind Mumsnetters sent me some 2nd hand Piedro boots and it took her only a week or two in them to go from not wanting to walk at all to walking quite well on her own.

She has some blood tests when she was 18 months and they came back clear so hypermobility is her only issue. The only problem she has now is that without the boots on her ankles bend to the side when she walks and she doesn't like to walk much without them on - she will 'walk' on her knees instead. I haven't read the whole thread so apologies for not knowing much about hypermobility, no one else in my family has walked late. My arms and legs do bend back a bit more than normal but I have never suffered any pain and it has never affected me in any way. DD doesn't seem to be in any pain either - she is happy and doesn't often cry except the usual toddler tantrum when she doesn't get what she wants.

I am wondering when her ankles will become less bendy and when she might be able to walk confidently without shoes on. We have seen a physio who wasn't much help - just said practise walking which is obvious!!

inadreamworld Sat 11-May-13 10:02:07

Just wanted to add DD sleeps in a very odd position - with her head down and her bum in the air like the way Muslims pray (no offence intended!!) I wonder if this is part of hypermobility?

Inadream world

It may improve often unless extreme end under 5 struggle get dx as can be more bendy yes that can be part of it and being honest lot of the time my youngest is pretty happy smiley chap which kinda throws people

I would ask physio to look at feet and refer to orthotics see if they give piedro boots as you know that they help

Midnight how is dd hip

On other news ds3 the LEA gone from fence sitting to hmm ok two day trial assessment for ds3 at the school I want and they are arranging transport tot . Think the splinters must be hurting badly

inadreamworld Tue 14-May-13 23:44:04

Thanks humancatapult I will take her back to see a physio soon. For the moment she is doing well walking with the boots and I am giving her time walking without boots on as well even though she is less steady without the support from the boots and walks with the ankles turned slightly outward. Reading other posts on this thread puts things in perspective and makes me realise DDs bendy ankles are not such a big problem.

Saw Dr N again yesterday, who was lovely as usual smile. She's changed DDs meds again on our request - the beta blockers were doing wonders stopping the permanent dizziness, but were causing a lot of hair loss (thankfully she started off with very thick hair, so although it's thinned a lot, it still looks "normal") - Dr N was horrified at the handfuls that came out in one run through. So she's starting Midrodine (to constrict the veins) in a couple of weeks after her tooth removal surgery, we decided not to worry the dental hospital with unlicensed medication wink. Also seems that it's only available via a hospital pharmacy, so she's being reviewed in two months rather than the usual three. No word on the clinic though.

Last night's sleep was some of the best DD has had in months, AND she was up at 6am doing homework shockshock. Annoyingly I know she'll crash later on, but I haven't seen her so enthusiastic for anything in months! Looks like she was a lot more stressed about the hair than either of us realised.

Her hip was loads better, until she fainted sideways off a chair on Tuesday and sprained it again [sigh].

Dr N also confirmed her recent migraines are POTS as well, it never stops really, with more and more things being added in.

bizzey Thu 16-May-13 21:26:18

Very belated catch up blush

inadreamworld...ds wore his till he was 7....physio decided he had enough strength to start building his own muscel's up without extra support from the boot's........Took a long time for to find shoes that did not "hurt or rub " him ! He was so used to the boots that everything felt weird to him.

Hope everybody is doing as well as can be expected....midnight a sprained hip sounds painful sad

OT did a quick assessment check and are referring him for a more in depth "full" assessment. She has agreed he needs ICT at school when she saw him write..(still nothing sorted )...and he is on 16'th percentile for visual perception...don't really know how bad /ok that is ??

He got himself caught up with a skipping rope at school today and has rope marks on his neck ....so glad he did it there and not at home ...it looks awful
SS would have been chatting to me if they saw it grin .

He is having more massages now as he is still talking of pain ...not sure if it really helps the pain but it does send him off to sleep quick ...and my hands are looking very creamed !!

Best wishes to you all flowers

CouthyMow Thu 16-May-13 22:44:56

Update on DS2.

Saw Orthotist, and after just 3 years without Piedro's (but in very supportive ££ shoes), his feet have totally collapsed.

He is going back into Piedro's, but this time with orthotic inserts.

Orthotist is also going to have a word with Physio about what activities DS2 should and shouldn't be doing.

Hydrotherapy still ongoing, weekly sessions on NHS. Me and his dad (My Ex) are also going to start swimming lessons for him so that he can exercise with the water supporting his joints. He's on 6-weekly Physio appts, Physio suggested keeping him on a regular dose of calpol, but I'm loath to start him on daily painkillers at just 9yo.

Giving them to him when the pain is at it's worst.

DS2 is seeing the OT soon, about physical aids, and the Physio has given us different exercises to do with him at home.

Have postponed the Prof G appointment till the Summer hols, no choice as I can't take him out of school when under scrutiny by SS. Appt in school hols circumnavigates that.

CouthyMow Thu 16-May-13 22:45:41

Oh - and as well as having orthotic inserts, now DS3 might have to have Piedro's too.

inadreamworld Fri 17-May-13 22:16:21

Thanks bizzey can I ask how old your DS was when he learnt to walk? Also when did his ankles stop bending to the side without the boots on? Though I know each child is different so my DD won't necessarily follow the same pattern.

I don't think DD2 is going to be a 'bendy' baby - she is only four months and can support her weight on her legs already if you stand her on your knee!! I notice the difference compared to when DD1 was a baby. DD2 seems to have stronger muscles.

Couthy crap on ss scrutiny but understand as I had it to lucky Proffesor pope appointment came in time and he dx ds3 with a rare form of eds ( only around 100 in uk that shut them up also Proff G backed the report when he saw him so best 300 I ever spent but if was uncomfortable 12 months under disabled children team who kept threading to refer to the children in need team. I did insist and get a written apology and offer of help if like ( I asked for Dp which was what sparked it ) bug told then close and feck of

We are going back to afo which ds3 happy about piedro boots are ok but I would ask for laces as often the Velcro ones hard to do tight

Dreamworlds

Yep mine like that you just know that something is Differnt about them

Outch Bizzey that sounds very sore does ds have statement that icy can be added to

Ds3 saw paed and more referrals endocrine ( 1cm in two years)urology as someone finally checked with ultrasound and yup testicale high I bern saying since 3 and ENt as breathes through mouth this last one I just kinda accepted as normal for him as no one else missed

But ds3 has his assessment next week tues/weds at a physical needs school a lot hinges on how this goes

CouthyMow Sat 18-May-13 11:44:43

Human - DS2 has to have Velcro. He's not on the SEN register anymore though SHOULD be and the school won't help him with laces before and after PE. Then again, they wouldn't even when he was on the SEN register.

So as he has to do them himself, we have to do the Velcro first. If that doesn't work, then he will have to get lace-up ones again.

Ah Yes we had issues with ds3 current scholk so at Review I had it added into statement

Hand a chat see if they can reccomend extra Velcro strap

Not so much for boots but other shoes lock laces been a god send for my others that struggle doing laces

babyjane67 Mon 20-May-13 12:39:38

hi all
another update!
weve now got another orthopaedic app forr dd on 11th june&at the right hosp this time!
so not too long to wait
shes now had her new orthtic boots&insoles for just oer2wks now&is getting on very well with them.they dont even seem to rub anywhere which they usually do so thats all good!
will let you know how the app goes!am going to ask for referral to physio as orthotics have suggested.
have also got parents meeting at the primary dd will attend on25th june when we can then make an app to talk to her teacher about any concerns ets so will ask about any help needed or available then

inadreamworld Thu 23-May-13 23:30:20

Hi a question for anyone who is knowledgeable! My DD is hypermobile in her ankles. How much time should she spend walking in her piedro boots and how much time in normal shoes/bare feet?

She was 2 last month, she walks very confidently in the piedros and likes wearing them all the time as she can move around the way she wants in them. Without the boots her walking is a bit unsteady and her ankles bend over to the side quite a bit. So she ends up going back to walking on her knees after a while when not wearing the boots.

Another question. A lot of people on this thread mention their children having digestion/heart/bowel problems connected to the hypermobility. My DD does not have any other issues apart from the bendy ankles as far as I know. I have read up on the symptoms of EDS and DD does not have any of them apart from the ankle bendiness. Sorry for sounding a bit dumb.....I didn't even know hypermobility existed until about 6 months ago when DD was 18 months and I had her checked as she was still crawling at that time and not walking or standing. So hopefully someone will educate me!!

CouthyMow Fri 24-May-13 07:34:42

You can have Hypermobility syndrome without having EDS. My guess is that the issues with the digestive system / heart / etc are the things that make it more likely to be EDS rather than Hypermobility syndrome.

I think for how long your DD should be in the Piedro's, you would need to talk to either your Physio or your Orthotist, because the only thing I know is my DS2 used to have to wear them 23 hrs a day. But I know someone else who only needs to wear them when they are outside of the house...

It can vary wildly!

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