EDS Hypermobility 3

[elliejjtiny]

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.

Stupid question, you did give them a mobile no ?

Yeah I did and rung them today seems it varies on which team do it

Yeah sadly confirmed its seizures and its causing neuto damage hence the clonus in both ankles so case trying new meds . Problem is we get control then new bloody type rears its head

Hey ho but confirmed today ds4 is officially person of short stature just need find why is just below 0.4 percentile height /weight

But Dr Ninis was lovely worth every penny eve. If not answer I wanted

am - I think we've got middle rate care and low rate mobility . Backdated for 8 weeks (since I ordered the form) comes to £592 which hit my bank account this morning.

DD2 has decided that means a shopping trip to buy some non-school-suitable Doc Martens is in order .

Yay hope dr martens are comfy . Don't forget to look at carers allowance if mrc. We're still waiting to hear on ds3

On positive side went to Lycra clinic with ds3 and his Physio was there . We were both expecting fight for funding if they felt may help . But after trying few things and couple videos . They agreed there and then lots measurements as needs be skin tight so custom made and it arrives around 3 weeks . Think Physio was more shocked than me that got without a fight

Hi ,
Can I join? Please? Finding little or no support where I am ! My dd is 2.5yrs old
Born with hypotonia - very floppy.
Lifted head @ 8moths
Sat @12 months
Weighbeared(sp) 18months
Stood/ cruised @ 24moths.
Walked independently 28months. Diagnosed with eds3.
Now at 2.5 a fairly confident walker
Very little verbal but understand everything .comprehension normal. Not on autism spectrum.
Fine motor better than gross motor
Frazzled mother !
Anything sound familiar ?!

Hi pink rose and welcome . Threads little bit quiet ATM due to school holidays

Have you got dd refered to speech and language as oral dyspraxia can run with the low tone ?
Who did you see up get the diagnosis ?

Hi , Thanks for reply!
Yes , in speech & language. therapist thinks she is just a late talker. she didnt hear a thing for the first yr of her life - ears full of fluid(has grommets).
we have peads neuro &peads rheumatologist that both diagnosed

Hi all, sorry to have been awol for so long. Welcome to pink and to any others who have joined whilst I have been off getting stressed by life

THC - I haven't read back what is happening? I have been trying to get hold of Dr Ninis' secretary all day today but she hasn't returned my calls. Will try again tomorrow. I am trying to get an appointment as Prof Grahame said ds needed to see her and he needed her help to find a neurologist for ds.

Midnight - I might be picking your brains about your form as I was not successful when I applied for ds.....thought I had done the form ok, but got nothing. Mind you they sent out a dr and he had never come across eds before, didn't examine ds and despite ds being in extreme distress and letter from clinical psyc he said ds had no psychological issues either....so I have no faith in the system.

Happy to help as far as I can with DLA application, although the EDS is such a minor part of DDs issues I don't think I actually referred to it in any of my ramblings other than putting it in the list of diagnoses - it was all about keeping her safe when she faints.

Other good news though - DWP have just rung me to say they're making a decision about Carers Allowance today (despite having lost half my form and the payslips I sent in, and me having to resend it all) - as far as I can see it's a clear "MR DLA = CA" decision though, so should be OK. Not looking forward to the PIP stuff next year once she's 16, as the criteria for that don't seem to take into account much in the way of supervision being needed .

DR Ns secretary seems to be on holiday a lot, but did get back to me same day when we needed a repeat prescription, so fingers crossed she's around.

Hello to everyone

Dr N's secretary rang this morning, she was lovely. She is going to get back to me today or tomorrow.

With EDS, POTS and pectus excavatum now dx by Prof Grahame, plus he having described ds as having secondary chronic pain syndrome....we might have enough.....maybe?????

Sparkle dr ninis is lovely

We saw her private but seems feel ds collspsed are seizures she also picked up that snoring may be obstructive sleep aponea luckily our nee fab paed agreed and got us into ENt fast who looked at videos order tests picked up serms ds need urgent an d referral to neuro muscular. As reckons cogential muscle condtion .and tgrien sonethibg else on ti table for his short statue.

Am waiting for her Secretary to get back to me...hopefully soon, will chase in another 30 mins or so. I want to get an appt booked. There is a waiting list even for private appts, booking for October she said yesterday.

THC -What can neuro muscular do, do you have any ideas?

How is the little man?

Its more looking what else going on so can tailor therapy as seems the ones doing may not be correct and if trying fix something that can't be fixed

Well it would be good to finally have clear picture of what is happening for him - very frustrating though.

I have heard back from Dr N's secretary, who is absolutely lovely. Can't book an appt even privately yet as clinic dates have not been confirmed, ds is added to the waiting list for appt, might get an appt date Oct/Nov time. In meantime she is going to see if Dr N can work with Prof G to find the neurologist/neurosurgeon we need so we can start the referral process for that too. Not going to get any help any time soon am I.....

Ds fainted yesterday evening, he has been very potsy for the last week or so.

Dr Ninis' secretary rang today and they suggest GOSH neuro unit? I am not sure as I have concerns re EDS and GOSH......any thoughts?

hi everyone I was wondering if any one could give me any support advice. my 5 year old daughter has just be dioaganised with EDS im struggling with getting my head round it and my daughter is really struggling with school. they are lacking understanding and don't seem to be interested any one with any advice or help I could really do with some
many thanks

Sorry to gatecrash. Ds2 is hypermobile "more marked hypermobility than other children I have seen" as quoted from his paed. He also has hypotonia.

He's 15mo and crawled 3 weeks ago. Still can't weight bear at all and has a hairy patch and extended bum crack so paed is sat on the fence as to possible spina bifida but doesn't want to put ds2 under general for an MRI just yet.

Ds2 had blood tests yesterday, something to do with muscle something or other and I know paed is leaning towards an eds diagnosis. Have any of your children had blood tests and if so can you remember what they are looking for? Don't have an appointment until October now and it's annoying me.

hiya my daughter has had all the blood tests there are going and has had a muscle thread where they tested for muscles reactions to impulses

with the blood tests they told me they were looking for a low vit D level

I'm sure protein was mentioned as in the muscle protein but I really can't remember. So frustrating having to wait.

it is really frustrating hopefully you wont have to wait too long did they give u any clue how long it would take?

They said the results would be sent to his paediatrician and I won't get sent a copy so it's likely to be October .

that's a long time I think things should be done faster not fair all the waiting