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.

Yup mind she first one that really has gone into battle

When you get someone on your side from within the local authority, it can make all the difference......May Battle Commence!

OK. Trying to get my head round all of this. Reading these threads, I know I've got off lightly.

I'm hypermobile in joints, not dangerously so, but dodgy gut, tricky bladder and weird circulation to boot.

Daughter seems same but worse than I was at her age, her dad is mildly HMS too. I'd like her to see someone privately. Prof Grahame, Dr Hakim & Dr Kazkaz are all listed as specialists at my local hospital. Is Prof Grahame the one to see or are they all good?

We saw Prof G at the teen clinic at UCLH (so NHS), and I would highly recommend him. He was very thorough, explained he wasn't the best person to see DD (her main issue is fainting rather than joint pain, though her ankles/feet are getting worse) so referred on to Dr Ninis at St Marys, who works with Prof G in his private clinic. She is also great, in DDs opinion the best doctor she's seen.

Dr Kazkaz gets mentioned on the hypermobility.org forums, haven't heard anythig about Dr Hakim.

When you say "weird circulation", what do you mean? Blood pooling in your feet? Dizziness? That kind of thing?

StJohnsWoodMum hi and welcome to the thread. I've only heard of Prof Grahame, I think he is the one most people go to.

THC He is already under the pims team who deal with children with physical disabilities. In Somerset you can get 1 to 1 funding if you are on SA+. A statement is the next step up and that is really hard to get. Most children who have a statement are at special school. I only know 1 child who has a statement in mainstream and he has downs syndrome. The SENCO says DS2 doesn't fit the criteria for SA+ so he is on SA. My friend went in to the reception class to help out and she said that DS2 was really tired but he refused to sit down and kept walking around the playground really slowly.

Hivst johns woods

I can really recommend prof G , dr Hakim is lovely to

Ellie they tell you that but please consider trying for a statement I was told ds3 not get one in ms .and our dc are sinilar

Infant he got 32 hours 26 first then appealed ( were now in speech base and looks like he also be funded 1-1 in afternoons after saying he not get ) . The first stage is easy just case printing firm of ipsea site and filling very basic bits in and send of along with copies of reports . If stuck will help

Thanks THC. Do you think I should try now or wait until they are writing more as I'm assuming he will have handwriting issues which won't be apparant now and I think he will have more chance of getting funding if he can hardly write as that will effect learning more than the tiredness. When my friend told me what the class was like I can understand a little bit why DS2 isn't getting any extra help. Out of a class of 23 there are 3 children who can barely speak, several who can't dress themselves and several who can't share. The teacher tried to get the children to tidy up and about 5 of them had tantrums. Some of them have SN, some have been "babied" by their parents. My friend who was helping said that DS2 looked exhausted and kept saying he was tired but he wasn't displaying "challenging behaviour" so his difficulties weren't that noticeable.

Ds had that issue to as he just went quiet . How far and does he have delays in other areas

Sadly the handwriting is not even really looked at till y2/3 . Has he ever seen a educational physiologist ? What about speech /eating

Has he had OT assessment to look if needs supportive seating in school ? If you have Ot may be worth asking her ?

Ds3 has a brezzi chair with pelvic supports /laterals /waist belt and a corner bit to stop him sliding down

Ellie - don't leave it until later, it can take an age to get these things in place, and the reviews will establish what changes need to be made to provision as you go along.

StJohnsWoodmum - welcome. Prof Grahame is the most knowledgeable and experience dr in the uk, and one of them in the world, he is also thorough, supportive and lovely. Dr Hakim is the new chair of HMSA (hypermobility syndrome association) he spoke at a conference which THC and I went to recently. He was lovely, very knowledgeable too...so either of them. I do not know Dr Kazkaz, so couldn't comment.

Suggested appt from secondary school is with Senco and assistant head, not Head as requested by me and suggested by PDSS is this the sign of things to come I wonder....well am not afraid of a battle!

He is physically somewhere between 21 months and 2 years, so between 2.5 and 2.75 years behind in his physical development. His speech is fine, he has a few mild gastro problems. He saw an EP once when he was about 14 months before he started portage. Eating is usually ok but he needs help if he is very tired. OT assessment done. He's got extra steps for the classroom doorway, grab rails and a step for the toilet. He sits on a chair for carpet time. The OT measured him and measured the school chairs and said they were fine because he can put his feet flat on the floor when he is sat on them.

I'll talk to the SENCO again on monday and try and get hold of the OT as well. I'm wondering if we should try and get an appointment with professor Grahame when he is 5 to get a "proper" diagnosis. At the moment we've just got "it's probably EDS" from the neuro, physio, geneticist and orthopeadic surgeon. The paed thinks he either has EDS and something else as well or something undiscovered that is similar to EDS. I think it will make a difference at school if he has an official diagnosis but at the same time I think we shouldn't have to pay £300 for a piece of paper that confirms he has EDS. Also DH is in denial and thinks DS2 gets enough help. He is surprised that DS2 gets a wheelchair even though we would be nearly housebound if he didn't have one.

Hmm tricky but not impossible . Ds 3 feet reach floor but he slumps /slides down in chair then leans what ds core strength like ?

Even straight forwards statements take at least 26 weeks and they turn 90% down at first almost like a test see who will fight them

Yeah we hacd the eds dx and something else not yet found hence the ddd study

THC - aren't you waiting to hear back from Dr Ninis? Have you heard anything yet?

THC - I also thought that the LEA turned so many requests down just to prove to everybody that the appeal/tribunal system works as well

news - DS had his colour overlay assessment and pink was not the best colour for him - of all things it was turquoise. They did confirm that he has all the indicators of dyslexia, but as we know, that can only be dx by an Ed Psych. Not going to waste my money as I showed school the info from the eye hospital, which says clearly 'dyslexia'. They said 'does that mean he has dyslexia?' I said yes - so they have accepted that.
Had also been disappointed that the OT that he has been given for the last 3 years seems not to have been happening. Spoke to the teacher at drop off, SENco had already organised 5 sessions, 3 by him, 2 by his TA (who is very good, a lot of experience in this) by lunchtime. That's what I call a result

Hi all... came on to catch up ....and now my head is spinning and I have just realised I am tired!!! as I have had a "hospital" day with doth ds and my dad ....more on that in a bit ....

I will do my usual waffling question and information post and hope it is understanable

aunt..how did you get BO referal ?? Does this mean your ds has dyslexia and dyspraxia ???? I LOVE turquoise....that is the colour of ds's eyes !!!

RE S/A......there was /is a thread going about govement changes/drafts for S/A..and I understood it as they were changing because there were TOO MANY appeals and tribunals ???

ellie cant find the exact title (of what Ijust said)...but it was interesting reading and my impression was that it is going to get even harder in the next few years to get an S/A so maybe think about it now....or at least keep diary for evidence ....log all daily probs....wish I had instead of relying on stupid snippets of memory all dis-jointed

OK where I am ....I recieved my 7 PAGE (!!!) report from the comm pead....the one I "loved" but she has been demoted to "like" now due to ..what I feel some variations/mis -interpretations of what I said I am not that old ..why did she plaster my age on every single copy to every-bloody-body involved with ds ...8 of them !

As I was saying....Dyspraxia or hypermobility....causing the problems ..she cant give a dx ..

Accademicly behind .....She cant give a dx yet

He has no dysmorphic features or neurocuteneous stigma......but has brisk knee reflexes ....(quoted)

MRI was mentioned again ....I have got other follow up appts to do before I see her again so will keep it in mind .

Hospital day....long wait for ds blood (2 hours!!) horrible pleb....took it as an adult not child ...no freeze spray or comfy position .

Dad had CT scan today which was delayed as some poor person in the waiting area needed the crash team (but I overheard later nurses talking saying all ok ...gone to casualty ) we were there for 2 hours....

But enjoying a nice glass of "grape juice" now and TG it's Saturday tommorow....oh and we slept it this morning !!!! For some reason my phone was on silent and ds1 didn't switch alarm on how we both messed up !!....After initial "headless chicken "reaction !! of OMG OMG OMG (with other words added in !) he got to school ok ...(lots of deoderant instead of wash !!)

Gosh I am in a chatty mood tonight !!! Hope it all makes sense ...not proof reading !

bizzey what a nightmare, and really cruel to give a child an adult blood test.
When I questioned the BO credentials, she was a not quite BO (as that is what the paediatrician requested) - but apparently as near as you can get (on the NHS). She did do many of the tests that would have been done. It was done over 2 appointments, so about 2 1/2 hours. At the first they agreed that he warranted further investigation, at the second she said that he had significant markers to suggest dyslexia. So a double hit of dyspraxia and dyslexia - but that's not uncommon.
When does your dad get his results? Hopefully not too long a wait, it's often the waiting that worries you more.
I also can't see why they had to put your age on anything. I don't think that I have had my age specifically on anything. They could have had an idea, such as mum had him at 36 years blah blah blah, but they would still have had to do some maths! Does it make a difference? Well I suppose if you were in your seventies, it would make it quite miraculous, but that's about it!
Enjoy your 'grape juice' - red or white grapes? - or a mix ( I hadn't thought of that!)

Bizzey

Nightmare even at 15 they keep offering ds2 the cold spray no waiting etc the first he declines the second I make him take

As for age thing can't see any relevance for it on dx stuff . Anything else I would ask sectary to correct Also they running any tests see why behind basic chromosome stuff

Yes statements are going to change meant be more between health and education which if anything will make it harder . There is talk of them looking at all that then giving parents a sum to buy it in . In theory sounds fab but far to many pitfalls as very fed get Ot and Physio and speech in their statements so money be tiny .

a question from our growing list of Things To Ask at the Next Appointment - do any of your DC burn easily? Both sunburn and hot things from oven burns? Only we were in Tenerife in June and although DD2 wasn't especially great with suncream, she burned excessively for the circumstances. And last week she managed to burn her finger on the pastry of the pie she was taking out of the oven (yes, the pastry on the top, not the dish, or the oven, or anywhere you might normally expect ), and it blistered up almost immediately.

I'd need to be really badly burned in order for it to blister, but poor DD seems much more sensitive. Anyone else noticed this? I'm assuming it's because of the soft skin thing, but I'm wondering if it's a "thing" with EDS or just DD.

I don't know about burn easily, but scar easily.
I have to do a lot of cooking and sometimes I think I look like I self harm with all the burn/scalds up my forearms. In all honesty, I don't particularly feel it's hot until I'm burnt.

Midnight - sunburn definitely.....somewhere I have read that as being a possible skin related side effect of eds....but can't remember for the life of me where I read it.

Bizzey - just cruel to do blood test on child like that! I would be about my age being plastered over everything...what on earth has it got to do with them!! Hope the grape juice was good and you got a good night's sleep.

Suspect children's access to resources and specialist will decrease massively by lack of funding if the personal budgets come into play!

Went to secondary school last night for a meeting re ds going in 2 years. Tentatively positive, think they might cope with him physically, need funding for medically, and need to see about pushing him academically, lucky problem to have I know.

Hi All, Sorry, asked a question then disappeared for a few days.
Midnight - my circulation issues are blood not getting to the ends of my fingers and toes on cold days, esp my fingers. They go white one joint at a time. I can't remember the term the Dr used for it.
I've done some further digging on Grahame and Hakim and I'll head to whoever is available. As Hakim is CMO of HMSA I'm sure he's good enough for my lot! There is less info on Kazkaz, I'm sure she's great but if I can get an appt with one of the other two I will.
I'll keep my eye on this board too. Thanks for all the feedback everyone

StjohnsWoodMum - Reynaulds syndrome is what you have described, it is a well known condition linked with Ehlers Danlos Syndrome.

Sparkle - that's the one. my mum's got it too. Just come back from lunch and my fingers are a very pale shade of pink...

Can be absolutely horrid, so hope you don't suffer too much with it.

Dc school is being OFSTEDed tomorrow, am helping out at the moment, so will be in there as planned. Hope they get recognised for the good work they do, but doubt it as Gove's plan seems to be fail as many schools as possible! Am going to ask for an interview as a parent, so I can tell them how the school has been absolutely brilliant for all my dc, academically, socially, emotionally and inclusion and disability for ds.

HI Stjhonswoodmum....appologies for not saying hello earlier....Yes I have that as well especially/mainly the index fingers and knuckles and big toes ?? It was sort of diagnosed in pregnancy with ds1 where I had to wear a wrist splint at night otherwise i would wake in the night with a "dead"arm....I just put it down to pregnacy ??

Midnight...what do you mean by "blood pooling in your feet"??
My feet veins "bulge" even at the start of the day so you can imagine what they look like after a hot busy day !!!!!! I just put it down to age and wear covered sandles in the summer ! Oh and my varicous veins are bulging lumps on shins and calf ....(sorry if TMI) or do you mean generally swollen and big ??

And now to give you all something to smile about after my gross infomation about my legs !!

DS(dx) has come home with his trumpet from school, finally, to practice every night !!!!! He is so little ....but can get a better noise than I can ....yep we all had to have a go yesterday !!!....Might need to warn our neighbour about the strange noises from our house ....."no we have not got an elephant as a pet"[grin}