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.

Hi my Ds2 has been diagnosed with joint hypermobility syndrome. He has some additional symptoms which having done some research could potentially point to Ehelers-Danlos syndrome. Could I join the thread and ask some q's about his symptoms please?

Barnowl, please join us, and ask whatever you want. There are people with lots of different experiences on here, someone is bound to be along who can help

THC - I know!!!! Arghhhh Was too good to be true!

Hi sparklerainbow,thank you for repyling to my message.Sorry about my delay in getting back to you but my other ds (9) had grommets put in on Tuesday and we have had a few probs/complications so was not able to prise the computor from him! You are right i am desparatly trying to find links that may not be there but i was hoping i suppose to have just one overall "problem"with him as oppossed to loads,as he has so much to deal with. School have not yet gone down the route of having him dx for a "spectrum"but Iam curious to know if h/m is more common in children with autism,ADD(He is not hyper so dont think adhd..everything is done at a snaill pace!) The more i write i am convincing myself that they are two separate issues as hp does run in the family..istill cringe at the thought of my granny's party trick with her thumb! Also in the family is a condition called spastic paraplegia,my dad and younger brother are disabled with it ,both were 3rd child like my ds3 which is why i suppose i am monitoring ds3 so much and maybe looking too deep. I am(was might be more truthful!)as i was a very flexable ballet dancer/teacher every one was amazed at what my legs and back could do but i can still do more than other 45 yrs old!!! Gosh i am sorry to write so much, i did say i had loads more to say ....it feels so good to "talk"to people who know and have wonderful helpful comments. Btw how difficult is it too get DLA for h/m . Well i hope this hasn't bored you or any one else reading it too much would love to hear from someone soon thanks

BTW everyone sorry for no little pictures but ihaven't worked that out yet!! And i should of paragraphed my message to make it easier to read!!!

Bizzey and barnowl, just do what I did and jump straight in! I agree, it's such a relief to have somewhere like this where you can ask the "daft" questions you're not sure about before you turn up at the GP and have them look at you like you're a idiot... In a lot of ways it's quite reassuring to have people who have a particular conditions say "oh, yes, that sounds like it could be x or y", then you know you're not just jumping to conclusions.

Bizzey, to add the pictures, look at the list of smileys underneath the message posting box, and just type in the word between square brackets. Like this (without the spaces) [ smile ] gives you .

THank you Ishallwearmidnight..Ihave got alot of apps to push for ,but am getting more confident now

:)

Hi Bizzey - I am glad you are getting more confident I have found this thread a real life line at times.

Others on mn special needs site have speculated that autistic dc may have and increased chance of being hypermobile, I am not sure that it is directly related. I have done a lot of research into bjhs and eds, and have never found the drs making a link, although that in itself means nothing . The thing that makes me wonder about a link is that they are beginning to understand the genetics behind eds and bjhs and how the collagen in altered, but that does not seem to be related to the chemical and electrical impluses in the the brain...at least not to a layperson like me. I can't help thinking that given the positive family history of hypermobility you have described, it sounds more like your ds has got a double whammy of conditions.....I am so sorry.

Others on here have successfully applied for and got dla. I was not so successful for my ds, although he needs it and meets all the crtieria, ds' rheumie was not helpful and we had a dla medical exam where the dr knew nothing about the condition. I will apply again, but need to get over the stress of it all first.

Grr DD2s vomiting has started back again, just when she was looking forward to actually being in school for a full week . Back on the lansoprazole, I think she stopped taking too soon last week, and should have carried on for more than three days after she stopped being sick to make sure the tummy was properly settled, but you can't tell teenagers.

Can't decide what's best to do about school - I don't see the need to keep her off for 48 hours for this (different if it was potentially a bug), but if she goes in and is sick there, then she's straight back home. She's missing so much school at the moment, and the worrying about that isn't helping her fainting .

Thanks for the welcome. I've been considering taking my ds back to the Gp as he he has several symptoms in addition to the hypermobility that are concerning us. If anyone could give me any advice on if there's a possible link and whether we might get a referal that would be a huge help.

1. When he's exercising he gets really shaky, he says he's not cold when he's swimming and he already wears a wet suit. I wondering if this could be down to muscle fatigue.

1. He complains a lot that his eyes are dry.

1. He bruises easily, takes longer than my other DC's to heal and scars easily.

1. He also seems to have some issues with swallowing.

Midnight - You really shouldn't have to wait the 48 hours, that is there to prevent vomiting bug infections , which is not what she has poor thing. Remind me have you had her checked for POTs or neurally mediated hypotension, which is what I have? (re the fainting)

barnowl - Not sure about dry eyes, but the rest are linked with eds/bjhs.....sorry. 1.
The tiredness is due to the fact that his muscles are already working so hard to keep his body upright and moving appropriately. My ds does this all the time, after 2 years of constant physio, he now gets physio at school, he is beginning to show improvement...but still way behind his peer group. Now what I say next is NOT to worry you, there are also vascular elements in some eds types. If he is getting very wobbly, and has what are decribed as "pre-fainting" episodes, he should be checked out for things like low blood pressure, mitral valve stability. I have something called neurally mediated hypotension (which means I have a fast resting heart rate (95), but low blood pressure (100/50), I also have mitral valve prolapse, both which are because of eds. I have still carried 3 babies to full or nearly full term, and am physically fine, exclusing my aches and pains from eds. So it is not something to panic over, but it would be good to know.

1. Will google dry eyes for you.

1. easy bruising and poor/slow scar healing is a primary dx symptom of eds/bjhs. Before drs knew much about eds, and I am sure this is true for some drs now, children were identified as possible victims of abuse becasue of their eds related bruising. I had easy bruising and slow healing put on ds' care plan at school as the first thing I did. Ds's physio always laughs at ds's legs and describes them as typical eds boy.....one giant bruise from top to bottom! There is nothing to worry about here at all, it is just a symptom, which is a combination of slower healing and increased chances of poor coordination meaning they fall or bump into more things than peers.

1. Low muscle tone in mouths is also a recognised symptom of eds/bjhs. My ds has slurred speech, especially when tired as a result. peech therapy can help with speech and swallowing. If it is an issue for him ask for a referral to a speech therapist, or physio. I have refused to refer my ds, as he has so much intervention at the mo, he needed a break from it, and I just work on it at home.

Hope that helps.

Well that was easy to find...in answer to your dry eyes connection, the simple answer is YES..... I have attached the link.

www.totaleyecare.com/ocular-complication-ehlers-danlos-syndrome-2.htm.

Have a feeling I did know about this link once....... spongy brain, sorry.

Another dry eye link www.ednf.org/index.php?option=com_content&task=view&id=1194&Itemid=88889049

Sparkle, yes she has PoTS (although it seems to be intermittent - or maybe it's because most of the time her leg muscles can cope?) and VVS, as well as psychogenic fainting when she gets stressed, and that masks the blood pressure related faints, which doesn't help with a diagnosis/treatment.

I've kept her off school today as she's still throwing up, but will go back to the GP tomorrow I think, as it's a bit on the late side today to be getting an appointment with a GP who is any good.

All three DDs are easy bruisers, DD2 reckons a lot of hers are when she faints and bashes herself, but thinking back, she always had loads of bruises at primary school which she couldn't remember doing.

DD1 was fascinated reading through some of the links when she was home from uni last week - she recognises lots of symptoms in herself, and even in me (I have the odd lumps on the inside of my heels, can't remember the name offhand). There's so much you just accept as normal, it's just how you are, until a connection is made, and it all falls a bit more into place.

I know, even after all these years I am still doing that....."That explains that then!" kind of exclamation!!!!!

My ds has absolutely no memory of most of his bruises, some of which look horendous. Even when he had been bed bound and hospitalised for a week, he still had bruises coming out! Good job his drs and physio aren't paranoid.

Thanks Sparkle all that info is really helpful. I think I do need to get him back to the GP's and see what they say.

I hope it is helpful.

Hi everyone very interesting comments over the last few days! My ds always has unexplained bruises..in fact one day if he was to have PE i would have kept him off! It was embarressing. I joke with him that i could do dot to dot on him and get a wonderful picture!

A few bruises on the shins are to be expected with 3 ds 10,9,7 ..football,bike and things(not that he really gets into it like them) but he gets them in odd places.

Hasn't complained of DRY eyes but frequently complained that his eyes are annoying him?

As for swimming..! you would think i was summerging ds into an ice bucket..shiverring,blue lips,stiff ridgid after 5 mins ! Supose it doesn't help that he cant swim but we cant stay in the water long enough to practice!!!!

Have left message for physio..email and phone no reply but need app in 1/2 term and gp and hope more will be done now i have my back up gang for support(smile)

Btw not really this thread but does anyone know a thread about divorce? ?sdh wants one and i am in the mood to take him to the cleaners!!!! Ihave been too good up till now (smile)(wine)

thank-you

Ha ha faces didn't work this time!!! too stresed!!!

Hello me again
BARNOWL ,have just re read messages as i knew i forgot to say something else ;ds is /was sooo slow at breast/bottle and food! Will eat at his own pace (40 mins for 3 fishfinger/chips/beans) shool dinners is a nightmare. Under SALT but not progressing.(sad)

Hi everyone, can I join please.My ds is 4 and undergoing dx at the moment have been advised has hypermobility and significant motor delay. Blood and urine tests tomorrow.

Have read through your thread and a few things are clicking into place. Esp the blue lips when swimming. Used to have to take him out pool really early every class and all the tiny little babies would be fine. Did manage to sort this out with a really thick wet suit though and really recommend. Ds does swim classes once a week and manages the full class now. Absolutely loves class and not aware yet not at same level as his peers who have been at class for just as long or less time.

Can really sympathise with the eating bizzey, omg he takes soo long and makes soo much mess. Just keep my eyes shut and try to get him to use spoon and fork. I always put a knife out as well just in case he fancies a go but doesn't really happen lol.

Wow Bizzy, your ds sounds exactly like mine.

Spiderman my ds wears a wetsuit to swimming too, people often comment because he's this tiny thing compared to the others shaking like a leaf the whole time (he does love the water though and the Dr said he should keep up the swimming as it supports his joints). I also know what you mean a bout the food my ds also makes a huge mess, much more so than my 2yr old dd.

Hi spidermanspiderman and wellcome! Seems strange for me to be saying welcome as i am a newbie as well! Wouldn't worry about the knife thing too much ..my other 2 ds 9 and 10 with no dx, think the knives are put on the table for decoration only! Everything gets shoveled onto spoon!

Was interested that your ds is going to have blood and urine tests..may i ask if they have told you what they are testing for?

Thanks for advice on wet suit i will look out for one.

the power of positive thought - the nurse at the GP surgery has just told me that DD2 has been referred to Prof Grahame . Any idea what waiting lists are like at the moment for first appointments? (not even going to consider the possibility that the referral may not be accepted )

Hi everyone, the blood tests are to rule out muscular dystrophy and some other things but not quite sure what. Was all a bit overwhelming hearing the muscular dystrophy bit when hadn't even thought about anything like that.

Ds is incredibly bendy, always used to joke it was like he had no bones in his body and when he flops and doesn't want to do something its almost impossible to pick him up. It's like trying to pick up a jelly.

Congratulations on the referral ishallwearmidnight.

Have also been advised that horse riding is really good at helping too but don't remember why, sorry. (it's just so expensive round here though).

Oh spidermanspiderman, your head must have been in a spin when you heard the words M/D. Hope it turns out ok..how long is the wait for results.