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.

auntevil - what a good idea, i hope you can meet up.

No sign of piezogenic papules on ds. Not sure whether I am pleased or not, as would like some asnwers

Hi Can I pull up a chair?

Ds is 12, he's hypermobile. He's currently at home with a dodgy belly, again. It's usually when he's worried about school work and they have been piling it on this week. I've no idea what to do. He has problems with his feet and ankles, he has insoles for his very flat feet but they don't help the pain. He can only walk a metre before his feet start to hurt. He also falls over, usually into the road or down the stairs so I have to walk with him. He struggles to fasten buttons, chop food and write as it hurts his hands. I tried to get DLA for him last year but they turned him down as he can walk (irrelevant that he's in pain). I did appeal but they rejected it. He's waiting for a physio appointment. The NHS provisions here are dire, I'm not sure what else I can do. Sorry to moan.

Hi ladysybil and welcome, nice comfy chair right here.

I have had exactly the same problem with DLA, although they even went as far as to say they acknowledged ds fell a lot, and falling was very dangerous for him, but he wasn't at risk so was I! Your ds sounds like mine, my ds is 8, he has all the prblems you describe. We have been having physio for 2 1/2 years now, it does make a difference, but it doesn't stop the pain, just helps to reduce the number of dislocations....probably Never apologise for moaning, we all need to do it, or we might go mad.

Do you see a rheumatologist or a paed who has dx him?

It was a physio. He saw her once, then she went off sick and he was discharged without them telling me. He used to see a physio privately, she was also a pilates teacher. It really helped, he fell a lot less. I can't afford to pay for it now though as it's costing a small fortune to get him to school. He can't go alone as he's a falling risk. The community paediatrician has referred him for some more physio so we're waiting for an appointment. She's not sure if he's dyspraxic as well or is borderline ASD. Did you appeal for the DLA?

The physical elements of dsypraxia are similar to those for eds/hypermobility, so could be those dsypraxic tendencies are all part of the same thing, doesn't explain processing elements of dysopraxia or ASD though.

I went for a reconsideration, but was still refused, stupid comments in the reconsideration like acknolwedge ds was too distressed to be examined by dla dr, and that he sees nhs clinical psych, but ds has no psych issues. The clinical psyc was oputraged when I told her that! I didn't go for appeal as was just too tired from fighting. Ironically as have so much more support in place now, might actually be easier to get dla, than when I was desperate for help and ds had no support...another stupid anomaly of the system.

They didn't ask his physio about him. He'd been seeing her weekly for 2 years. Instead, they asked the GP, the one who's only seen him once. I need to apply again. By the time I've paid to take him to school I'm broke. Taxi's are making a mint out of me! I need to learn how to drive but I can't afford it whilst I'm paying for cabs because he's in pain and can't walk. He can't pick up tone very well so he comes across as abrupt. He can't always pick up other people's either so he thinks he's being told off when he isn't.

I don't think they have a clue. It's exhausting just going from day to day. The form is a nightmare, I'm not surprised that you don't want to apply again.

We had our first physio yesterday, and the physio carried out a Beightman scale assessment (I think that was what it was called). He scored 6/9 and she said that his upper ligaments (arms/wrists/shoulders) were definitely hypermobile, his legs not so much, as they seemed more fixed. She said that he probably has benign join hypermobility rather than EDS. She gave us exercises and signed us up for some water classes in the local pool which is great.

She also said that she has no idea what is causing the leg/ankle pain as his legs seem ok. She said it could be hypermobility but that she would just keep an eye on it as it could be swelling from the joints caused by his CF.

We then followed up a great physio with parents evening. Not so great. DS is working really hard (he goes to a very good school, where students tend to be rather, um, bright and are pushed to the best of their abilities). The teachers are happy with his effort and behaviour, but my goodness he is struggling. His writing is unreadable (he is in year 3) and he is not doing very well in maths or PE, and they basically said they were waiting for the OT appointment just to confirm that DS has dyspraxia. The school are being very understanding and think that he is very capable just restricted by the dyspraxia.

I cried. At parents evening. Luckily it was on the way out but I feel like such a fool. I was kind of pinning my hopes on it being Delayed motor development, but it's looking more typically like dyspraxia. I know I am being daft, and we just need to push on with the appointments, I just feel so guilty that he has so much to deal with at the moment. Alongside the CF stuff, and all the exercises he never really seems to have much time anymore, it's all treatment related from when he gets home from school to when he goes to bed (and then throughout the night with his night feeds). I think I may leave the thread, as I am really aware that I'm being a moany sod, and it's not fair to inflict that on the rest of you, especially when you all have so much to deal with. Thanks for all the help, it's been invaluable, and I will keep reading to catch up on you all.

Reindeer STOP!!!! don't you dare leave the thread! Not only would we miss you, but needing to moan and ask questions and worry and answer others questions is exactly why I started this thread in the first place.

You're not being moany, you're stressed out and it's no joy at all to see your child in pain. The ankles and legs have to work hard to keep a person standing, if the ligaments and muscles are 'bendy' then they are working harder then normal. I think this is what causes pain. Ds is usually OK for a few minutes when he sits down. It's not a cure but it helps, until he stands up again. It's great that the school are understanding, ds used to get told off all the time for being slow and falling over. His current school is a lot better though. Have you tried boots instead of shoes? These can help as they support the ankles.

Now lets tack this dyspraxia. Are school saying he has processing issues of dyspraxia. My ds has terrible problems with writing, terrible issues with PE and his gross and fine motor skills, well more his gross than his fine, but his gross are awful, significantly worse than those kof his 3 yr old sister. I think it is real credit to your ds that he is still trying as hard as he obviously is, and hasn't given up yet! With eds/hypermonility it is not so much delayed motor development, but the fact that they are not wired up right in terms of spatial awareness and kinesthetic awareness combined with poor muscle tone and ligament strength and the fact that their bodies move ikn ways they are not dsigned to by nature.

I am afraid to say the physio is wrong about eds/hypermobility and mid leg pain, there is a lot of evidence by the specialist drs in the field that this kind of sometimes debilitating pain is aprt of the condition, they don't really know why, but it is probably to do with the general muscular skeletal instability. The pain your ds is experiencing may be cf related, but to me honest I think eds/hypermobility is more likely. I am glad the physio was helpful, but still think you need to see a dr to dx this. The evidence is also pointing towarsd eds and bjhs being the same thing, not different conditions.

My ds just has eds and I often feel like his life is entirely medical, school then homw to physio or appts, or a list of things he can't do because of his condition. It is horrible, very few people understand itis frustrating and I am very about it, you are so not alone.

Good ideas ladysybil and well said!

Ds was referred to othopedics about his feet and legs. He was one step away from having an operation to chop his femurs in half, rotate them and pin them back. The doctor didn't listen when I said he's hypermobile. He had to have a gait assessment, there's a slight rotation when he walks but nothing that requires surgery. The doctors really don't have a clue. Parents and patients do become experts, it's very wrong but you know your child's abilities and disabilities far better then the 'experts'.

and yet so not surprised ladysybil

Told you they are useless here. It doesn't fill me with confidence for any future diagnosis to be honest.

Ah I'm sorry for being a flouncy arse, I just feel so defeated by it all. I didn't know EDS and BJH were the same thing, I thought they were different but with similar symptoms.

His legs have become more sturdy since he has been going to trampolining so maybe they are just strengthened so less flexible than they were? I am not sure where to go from here, I think I'll await the OT and see what they see as they will have to deal with the hypermobility so i think it's best to push them rather than the physio. The physio also recommended he wears his trainers as they are better for his feet than boots, and he is not flat footed ( although she did say he's not flat footed yet?) so she would prefer he wore traineres to his school shoes.

Our evening routine consists of two physios (15 mins each ) two nebulisers (10-30 mins each) meds, bolus feed, main feed, homework, writing practice and now the new exercises on top, which they want us to do daily. Plus he does eat a normal meal, and getting him ready for bed at 7. No wonder he's so tired all the time, and that's not including his morning routine.

School have basically said that he has dyspraxia tendencies, such as poor balance and co-ordination, very poor fine motor skills, cannot recall times tables, cannot do mental sums and struggles with handwriting. They said that he has difficulties staying on topic, and focusing on the task in hand. They said despite this he is really pushing himself to get written work done, despite the fact that it takes him much longer due to poor handwriting. His teacher has a child with similar difficulties and she's being really wonderful about it all, but she can spot the small differences.

Thanks Sybil and Sparkle, thanks for truly understanding, especially when DH has been less than supportive, I feel more understood here than anywhere.

Sybil, they were going to do a major operation without checking he was hypermobile first?! and for your DS. Good job you were on the ball and stopped them.

It sounds really stressful for you, Reindeer. There will be a point where it all gets easier, I'm sure of it. Ds had pilates lessons which really helped, maybe your ds could try? Ds is also being tested for dyspraxia, although I'm not sure if the physio that the community paediatrician has sent him to can diagnose this. I think there's an OT and a SALT in the same place though. It's hard for mums, we see our children at their worst, when they are in a lot of pain or are shouting and screaming because they are exhausted so it's hard for us. Is your son able to use a computer? It may help if he can type his work out rather then write it.

Yes, they are really, really crap here. That's why we've had no help. The physio was private, he saw her for a couple of years until I lost my job. The GP's no help, I was told to give him paracetamol and there was nothing else she could do.

reindeer please dont go ...you must know i am trying to get a dx for dyspraxia as well and we could go through this together!!!

I have no one to talk to of my concerns(only ds10yrs not really fair on him !)

My mum is useless as i end up having to reassure her all the time...and if/when xdh finds out he will blame me(think that just sums up why i left him ha ha )

I have got physio later 1st one in a year,new lady who wants to do new full assesment..must write down the names of those score things that keep coming up in the thread.

I will updated results later.

reindeer - take out the recall of times tables and mental sums, and you just described my ds. My ds is definitely not dyspraxic but his poor gross motor control, poor spatial awareness, poor handwriting, poor coordination, frequent falls, and bumps, poor balance, slurred speech, difficulties using cuttlery etc are all due to eds - poor muscle tone, kinesthetic awareness. It is possible that both your ds and bizzey's ds have dyspraxia as a separate condition, but I do wonder whether it is just eds/hypermobilty rearing its head, it would seem even more of a blardy nightmare for your ds to have cf, hypermobility and dyspraxia. Also a long time ago, in a previous lifetime (sure you remember that feeling) I was a primary school teacher, and I had some dypraxic children mainstreamed over the years....they had a lot more processing issues....just a thought, as not very knowledgeable about dyspraxia, and will not pretend to be

bizzey - scores are Beighton and Brighton, will go and find you a link to read through or print out now!

www.hypermobility.org/beighton.php

this link has the beighton score and the more up to date brighton score linked into it, as described by Professor Grahame.

www.hypermobility.org/painandhms.php this link talks about pain and hypermobility and how eds hypermobile type and bjhs are probably the same thing.

reindeer ..i think i x overed alot of messages while i typed with my two fingers!!
but you must be exhausted having to do all that and so must ds.I think school for them must be the equivelent of me trying to a PHD in Physics. My brain would just overload and switch off !!Along with tired legs and arms for H/M it becomes a stressful time for them and us seeing them go through it .

Not sure when i joined this thread..so not sure if i said it ...but his teacher raised concerns that he was MALNOURISHED as he was small and skinny and that was why he was underachieving at school...and spaced out....NOOOOOO he just cant process information !!!! Imagine how i felt after that parents evening !!!!!!!!!!! WE need this thread and if we do go on we are not FORCING people to read it but it is theraputic for us

www.ednf.org/documents/EducatorsGuide%28r2011%29.pdf I had forgotten this guide, it is american, but I think it is useful nevertheless.

It is so theraputic to be able to write down your frustrations and worries. Bizzey my ds was so thin this time last year he classed as failing to thrive, and his growth halted. I think it is pain related, when he is bad he just doesn't want to eat! I filled him full of extra fattening things and lots of cake, and he caught up to where he was, but I am sure he will fall behind again when/if he has another really severe bout. This damn condition affects everything!

I would have just burst into tears at the malnourished comment bizzey - am sure the teacher was trying to help but even so...... big hugs!

Gosh so much happened on this thread since last on here. Have just tried the beighton scale and scored 9 myself lol. Not much chance for ds.

I would have been absolutely furious re the malnourished comment bizzey. I am v slim myself so get loads of comments. Ds is likely dyspraxic and have even had the "foetus not getting sufficient nutrients during pregnancy could cause dyspraxia" line. People can be sooo rude and just presume I must have an eating disorder or something.

Ds not at school yet and I'm having a melt down about it. Just got to find decent private assessment centre now.