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.

Sparkle, that is a fantastic letter - thank you.

The only think is, I think the first teacher, failed to tell the other two about the hypermobility and focussed on his other worries and lack of confidence. She seemed surprised when I raised it again yesterday, as if she'd completely forgotten about it. With that in mind I think I might go a slightly different route and ask to see the SENCO - who is generally really good - to explain the situation and ask how we can best let all staff who deal with ds2 know what they need to know about the condition and what it means for him.

I am still going to approach this Head of KS2 this afternoon though and ask her advice.

well, GP has referred her to the Royal National Hospital for Rheumatic Diseases in Bath (to the Adolescent Rheumatology clinic as she's 18, so still technically covered by them) - the waiting list is 30 days - would be 3 months if she went to the adult clinic. She'll have broken up for the summer by then, so we'll go up for the day. He did say there wasnt' much they'd be able to do other than some physio, but she said that if that would help with the pain, then that's all she wants. Both is us are a bit less stressed now.

oh moose ..i want to give your ds a big hug...he sounds like my ds's twin.!!

Hope you feel better soon

moose mama - can't scroll back easily to see if you have this already, but what you need to sort with the school is a Care Plan which sets out exactly what is wrong, what the symptoms are, what triggers them, what can be done to prevent them/ease things. Write it up with the Senco, and the HT will sign it off, ad make sure that it's circulated to all staff (teaching and non-teaching). I adapted DD2s one from here, but need to update it to include the EDS - it was originally to cover just her fainting. I did come across an American version for EDS (or at least something similar) but can't think where now.

Moosemama- I would write to the paed, copied to the gp with that info.

I thunk approaching the Head of KS2 is a good idea, but I would still write to the Head, just tone it down a bit by acknowledging that the teacher had perhaps forgotten about the hypermobility.....although that in itself still makes me - she should not be "forgetting" something so important. Fundamentally he still needs the care plan (which the SENCo should tell you, but if she doesn't please tell her, because OFSTED would eat them alive if they didn't have one!) and the meeting. I wouldn't worry about not having a definitive dx in writing from the paed, you will probably never have anything so helpful, my ds certainly doesn't. You just go and say this is the working dx.......

Moose -I have a detailed care plan wbhich I could email you, and other associated bits and pieces if you would find that useful. I will go and find the EDS info link next.
I would also mention to the SENCo and Headteacher about ds' fear of speaking up when he is in pain, they need to put some sort of card process in place so he can indicate he is in pain, without dsitrupting the lesson....if they are going to be such arses about him raising his hand!!!!! and i say that as a teacher!
As Bizzey so well put, take care of yourself and hope you feel better soon.

Midnight - that is a pretty good result. A good referral and a gp who ap[reciates that physio is the best (ok only) thing they can do....that is a gp you can work with!

midnight - this was on another op the other day - hope it wasn't you that posted, that would be embarrassing - but I thought you might like to send to your DD - I'm sure she'll see the humour
hyperboleandahalf.blogspot.co.uk/2010/02/boyfriend-doesnt-have-ebola-probably.html

moose - eyebrows are still fixed on the ceiling - jaw on the ground - what you described they were going to do to you as a child - OMG. You definitely need to mention what the drs were planning for you - even if its only so they can tell you that they wouldn't do it like that theses days. It might make them sit up and take notice [hopeful emoticon]

hyperboleandahalf.blogspot.co.uk/2010/02/boyfriend-doesnt-have-ebola-probably.html

Always forget to tick that pesky box

hyperboleandahalf.blogspot.co.uk/2010/02/boyfriend-doesnt-have-ebola-probably.html

Lets try again with brain in

here is the booklet, this is the Us one which is much better than the UK one (which you also have to pay for)
www.ednf.org/documents/EducatorsGuide%28r2011%29.pdf

Thank you for all the links and information, I shall print them this evening and have a read through - am struggling to take things in if I read them online today.

Ok, dumb question number 1 million 3 hundred thousand from Moose.

Can you have hypermobility to the extent ds2 has without having EDS, or is it the benign type of EDS. I think I have confused myself now.

So I caught up with ds1's teacher and asked her advice. She said she's sure it was all just a misunderstanding and she would go and speak to ds2's teacher and tell her we still need a proper meeting to discuss everything. Think I'm making a right pig's ear of all this though, as I realised when I got home that I forgot to say I wanted the SENCO there. Doh!

Also had to call the non-emergency police number to report a rather suspicious character, who was hanging around outside the school gates at pick-up time. I've never done anything like that before, but this guy gave me the creeps. He was sitting on his moped/motorbike thing facing the school gates, watching all the children coming out. It's a dead end close and parents park in a car park on the main road, so there's no reason to be there if you're not collecting a child and obviously you can't collect a child on a motorbike anyway. Gave him a hard stare on the way down to the school and he was still there, watching the stragglers, when we came out - late because of speaking to ds1's teacher. Gave him another stare and a couple of minutes later he suddenly started his engine and drove off in the direction of the local secondary school, that happens to come out at about that time. So I took his registration number and called 101 for advice. No reports against him or the bike, but they logged it and thanked me anyway and said I did the right thing. He didn't do anything, but he definitely gave off strange vibes and as I said, didn't seem to have a legitimate reason for being there.

sorry am awol a bit as preparing for DS3 AR .

Ellie

phone up and push for them to refer you now for the study as you can go alongside neurology .And they have a maxium number of dc of 12 thousand on the study sounds a lot but its not really

Sparkle glad Pirate dog is ok and hope you are to /Sorry to hear Ds is still struggling ask Gp for referal to Gosh they can do it and sus[ect your ds will get more out of it than ds3 did

moosemama you can be hypermobile without having EDs but often becuase you ahve no issues caused by the hypermobility

And yes Sparkle am taking the Gentic appointment at addenbrooks .their Gastro care is second to none but their orthpeadic care is shocking

haven't found any decent ortho care anywhere yet, even the Royal Ortho Hospital Consultant who I rate way above the others is still vague and fudges things he can't explain/understand

Just flying in really as am knackered, Ds was admitted to hospital yesterday evening with extreme neck pain and associated neurology. They gave him NO2 to reduce the pain a bit and it did work, poor kid. He was discharged today, and is home now, and pain is at a more manageable level and they can't/won't do more there anyway. He screamed so with it, it was heartbreaking.

Moose the professional jury is out on whether EDS and BJHS are in fact the same thing. Prof Grahame believes they are the same thing, and he is probably the most knowledgeble rheumie in the country...... If you look at the symptoms for BJHS and EDS the differences are the scale of joints affected, and history of dislocations and subluxes....you don't have to have other aspects (eg heart, gastro and skin) for it to be EDS as oppsed to BJHS. As THC says the opinion seems to be if you are hypermobile in some joints, with some pain, but basically life continues as normal then BJHS, if more severely affected then EDS. Well that is my understanding!

Yep though mut admit i did not notice the skin issue but ir was picked up on by Proffesor Pope .

Sparkle how good is your Gp ? as am wondering cant remember if your ds has a dx ?

But for others who are not sure you can ask to be refered to Professor Pope who can dx and then makes reccomendations to Gp for who you need to be refered to

Sparkle, sorry to hear about your ds. Hope the pain eases soon, it's awful seeing them in pain at all, but so much worse when they are in screaming agony and you can't help them or make it stop.

Thanks for the info re BHJS and EDS, I have no clue what the outcome/dx would be for ds then.

I finally have a meeting with school tomorrow afternoon, I guess I tell them that at this point we don't know what the final dx is.

Ds was in a huge string instrument concert last night, all the children from his year plus children of a similar age from lots of other schools in the borough. He was sat at the top circle with his legs dangling and it was horrible watching him getting cramps and attempting to do something about it without looking obvious. I also noticed that he just couldn't get comfortable and was constantly sliding down his seat, curling up onto one hip or hugging his knees. So frustrating, as I couldn't get to him or his teachers to tell them that he needed to be sitting at the end of a row so he could get up and move around if he needed to and that he needed a footrest, rather than having his feet dangling. Of course if they'd met with me last week like I'd asked them to, they've have known all this beforehand and there wouldn't have been an issue.

THC ds has a EDS dx, made by Prof Grahame when he was 20 months (ish) No medical prfessionals have ever raised any doubts, everyone is in a agreement that he has EDS (I have a dx too). Our Gp is fantastic, it is just the Rheumie who is a git of monumental proportions

The Hospital paed raised concerns yesterday over lack of joined up thinking re neck pain and neurology symptoms, pain levels not being managed affectively and lack of useful ortho input. Felt like shouting "yes, finally someone else has said what I have been saying for years now", but remained calm and asked him whether he thought a pain management clinic was what was called for, he replied absolutely, that he couldn't believe ds has been left to get on with such pain levels, and he was going to tell the rheumie what he thought!!!!! I wait to see the results from that with bated breath.....hm Pain clinic run by Prof Grahame I think!!!!!!!!!

Moosemama tell school you have a working dx of hypermobility which may infact be EDS!!!!!! Don't play it down because you have got anything written down, school need to hear the possibilities.

with school re the concert last night. Mind you it gives you some ammunition for today, to be able to make your points effectively with real and recent examples.

Sparkle, I will keep everything crossed for good results from the hospital paed's reaction to how your ds has been let down. Really hope he gets a pain clinic referral asap.

Boys are off school today because their school is a polling station. Ds got up at 10.30, ate some porridge and then went back to bed. Poor child is beyond exhausted.

The meeting is after school tomorrow.

THC I'll try and phone the geneticist today. DS1 and DS2 are off school and preschool today because of one of those tummy bugs where they are ill for a couple of hours and then climbing the walls. Hopefully I'll be able to sit them in front of a DVD this afternoon and make all the phonecalls that I usually save for thursdays when there is only one child in the house.

I can't remember who was asking about bloods but DS2 has high muscle enzymes but not high enough to be muscular dystrophy but all other tests were normal. DS3's bloods were normal but he didn't have the muscle enzyme one.

DS2 tried out his friend's blade wheelchair and he loved it. He managed to propel it a little way and his friend's mum said it would be easier with his own as it would be properly measured for him. I'm hoping his appointment with wheelchair services comes through soon. He had a strop when his friend from preschool tried to talk to him yesterday when we were picking up DS1 from school and I thought they'd fallen out but then we went to the after school group at the church near the school and they played fine together. I realised it was probably because DS2 felt embarrassed to be in his buggy . It was lovely seeing him with his friend who has physical disabilities and his friend's older brother who also has physical disabilities. I'm glad there are going to be other children using wheelchairs at school when he starts.

sparkle just noticed your post, hope the pain clinic referral comes through quickly, your poor ds.

Ellie - don't know that we will get a pain clinic referral yet, but at least now I have a stronger "bargaining position"

for ds2, wheelchair is much the best way to stop his self esteem going even lower.

After my useless appointment for DS1 earlier this year - and my subsequent complaint - I have a letter to confirm his appointment to give answers to all the questions I asked - including confirming hypermobility and what course of action they were going to take. I had to laugh at the way the letter was worded. The letter confirmed another appointment for DS1. Had to laugh - do you think they were trying to make a point?

well if they had done a good enough job the first time..................

Sparkle hope Ds gets the pain clinic a lot on the course say it was very good . Erm can paed write to Gosh at all ? .

We had OT today and wow she is now changing stance agrees computer for writing is needed . Though to continue with hand excerscise . Also needs typing practice .

And needs a brand new seating assessment as the chair he uses now belongs to his current school it's just the extras on it that ate Rios

He needs high /lo as needs work at diffent heights . Needs be on wheels between the two classes . Pelvic supports and pommel to stop him sacra sitting and slumping . Also needs higher back and side supports as when tired if can't slump forwards will slump sidewards

But I'm still getting private assessments. Done