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.

Sparkle yes to POTs dr ninis involved but they concerned as can see what is possibly a small aneurysm < bricking it >> which could change things completely .

It could just be stretchy artery but local cardio not happy so October is Lobdon and may need MRI

And yup on the schools I looked year 1 ready for year 3 . Fingers crossed you find right school maybe now time push fit statement though computer wide senior better but PE well they can be complete bastards

THC - fingers crossed for gastro and cardio appt. Stressful times.
What are you hoping for from the gastro? Our gastro has been quite good to a certain extent, but very reticent to tread on fingers of the other consultants. This means literally that they only consider areas once the food is in the tract. Swallowing etc not included - that's ENT, SALT, OT. Dietary advice comes from the dietician, etc etc.
Ultimately we had lots of tests and although they admit there's a problem, cannot do much about it. I did get the concerned sit down chat of 'IBS is a real condition - and dx' and a few intolerances dx, but symptoms are still there several years later and now all bar 1 of the 3 discharged as they can't do much more other than pain relief.
Dreading schools too. sparkle my DS in yr 5 and been looking around. DH did come to 2 and said of the only one that he is guaranteed to be offered that he would not be going there. Let battle commence with the LEA - bring it on!

Not banking on a lot but apparently he finds a lot of eds people have a problem in small intestine a infection and that it strips away the mucus there's a test for it but he often does the antibiotics anyway .

It's more for ds2 to feel that someone actually understands and stop treating him like a little child

Weight I don't know dietician put him on a build up drink the local gastro took him of it said well some people built just like that and his weight staying steady but 54kg at 6.2 is not normal

Good luck on the schools were having a rethink for ds2

That's rethink for ds3 not ds2

Who else is under Brompton for heart issues

We are seeing Dr Franklin how good is he and what does he know about EDS

ok some info out at the monet

The clinical problem: Functional bowel disorders are a group of
gastrointestinal conditions which cause chronic abdominal symptoms but
where medical tests (e.g. x-rays, blood tests and endoscopy tests) are all
normal. These disorders are very common and account for about 30% of
referrals to hospital gastroenterologists
An example of such a functional bowel
disorders is irritable bowel syndrome
(IBS). Most people who suffer with
functional bowel disorders have mild
symptoms e.g. bloating and occasional
pain.
Others however, can be completely
disabled with it ? these people cannot
leave the house, cannot eat, they rely
on artificial nutrition and some end up
having sections of their bowel removed
just for temporary symptom relief.
Unfortunately, the cause for these
disorders has not yet been discovered
and there is no cure for these
conditions.

As medical testing is usually normal, a
lot of patients are told that there is
nothing wrong with them, or are
treated as if they are inventing their
symptoms. This causes even more
patient distress and leads to high levels
of depression in some cases.
The research into the cause of
functional bowel disease has focussed
on factors such as depression, low
grade inflammation and bacteria in the
gut, and nerve and muscle problems of
the gut.
Although these are important they donot explain a large proportion of
patients with these disorders, which
probably means that there is another
cause for these problems which has not
yet been researched

we were (not for heart but for PoTS), but the locum registrars we saw were pretty much useless for that (one looked at DDs lying down ECG - which obviously was normal - and said, well there's no issue with your heart rate ), and another one said that because she couldn't bend her wrist back on itself and wasn't in a wheelchair she didn't have EDS.

This was in Dr Till's clinic - electrophysiology (although we never actually saw her). The nurse specialist was fantastic though, and answered lots of my email queries, AND was really helpful with school stuff.

The role of connective tissue:
Connective tissue is found throughout
the body where it supports and binds
all the other organs and tissues, much
like scaffolding. It is present in the skin
and joints, and is also a very important
component of the gut.
In patients with the Joint Hypermobility
Syndrome a genetic defect of
connective tissue results in stretchy
skin and flexible joints. Preliminary
studies suggest that these patients
suffer with unexplained gut symptoms
and functional bowel disorders.
Moreover, our group has studiedpatients with severe functional bowel
disorders and found that almost 50% of
them had undiagnosed joint
hypermobility. This raises the question
of whether abnormalities of connective
tissue of the gut (which have never
previously been looked for) can cause
symptoms, and whether this may
explain why some people get functional
bowel disorders.
Our research: Our group aims to find
out what the link is between joint

Dr N told us that in Dds case, where the autonomic system was disrupted/overly sensitive, that all sort of bodily functions can be disrupted, including the gastric system (gastroparesis being the most common one - where food sits in the stomach cos the system can't/won't process it) so that might be an explanation for the functional bowel disorders? Worth asking when you get someone who knows what they are talking about?

Thank you midnight

This has come on back of 24 hour montoring .We got a call less than 48 hrs after returning it to can we come and see him and mow echo shown a abnormality ..We know his heart race and crashes and truth suspect pots .Will get hold of Dr ninis sectary next week when she back and get her to let Dr ninis know

but intresting that they done seem to understand pots .Though ds3 will be ok on those othe rmarkers yet ironic its the other things they dont score cause ds mor eproblems

Hope you get some answers! They claimed to understand PoTS, and to be treating other DC with it, but in DDs case were gettign bogged down with the psychogenic fainting (which to be fair when they first saw us was up to 120 times a day, so I can see why the PoTS was minor in the scheme of things ). The second locum was just out of her depth though, and at the time I wasn't clued up enough to be especially forceful.

As they also suspect PoTS, then ask about autonomic dysfunction. This website is recommended for info, although I haven't properly looked through it myself.

I'm bricking it my fear is my dad died of aortic rupture from undx anyseum. Dd had repair to her aorta as has ds1 . Dd and ds1 have eds type 3 . Ds2 heart scan recently was ok . He be seen in 5 years

Hindsight who wants to bet that it's all related

But ds3

THC - can completely understand how frightened you are about it all!

Some excellent info here - thanks.
A friend of mine is a consultant paediatrician and he totally believes the connection between hypermobility and gut issues. He gets really frustrated when I tell him the brick wall we keep coming up against.
Just a shame he works in a completely different PCT!

Im starting getting really
both girls have a dx of Autism and thats all anyone see :(
DD1 had club foot as a baby and has tight tendons and shoe inserts. Shes always in pain :(
dd2 has a dx of hypermobility. We were advised to put supportive shoes on and thats it. But shes falling over all the time and every day we have a form from school :( She is so tired and cant even run at age of 5. She also gets weird rashes often, the sort you get if you have menigist (sp?) Everytime she is sick they note her high heart rate too.

neither girls are under the physio and their Paed doesnt reply to my emails but GP insists that it has to be paed who reffers.
Any advice??
Does it sound like EDS?
Can you have tight limbs with EDS?

I know that the physio was reluctant to work on DS1s tight hamstrings as she said that the tightness might be helping to stabilise his joints and that to relax them might lead to more problems.
We have only seen a general physio - so hopefully there will be others on soon that can give you an EDS physio version.
OT referred us to physio as GP deferred to paed - who said that plenty of exercise was the key and that at some point he would need his joints supporting
I was also surprised at A&E. DS2 sprained his ankle and was given physio within 2 weeks - I didn't mention hypermobile joints.
DS1 has been 4 or 5 times within the last year - same ankle each time. Sent away with no follow up - hypermobility mentioned. Its almost as if they expect it as par for the course, and just to accept it - not to look for ways to prevent it from happening.
DS1 is also dyspraxic and I think that muddies the waters too. I mean, you would expect a child with 'clumsy child syndrome' to always be at A&E with joint problems.

Yes you can have over tight with eds /hyper mobility as some tighten up to compensate for the looser ones . will try find where I read it

Go can refer to Physio or sons areas self refer yourself then Physio can refer to orthotics as needed . Also ask GP to refer you to Rheumotolgist but make sure you found one with experience of It

Physio meh we hold honour of being booted from Gosh hyoeymobiliry clinc due to his other needs
Local wise it's hit and miss and they pretty much given up as think we have ds as far as he is going to get

Am calmer now but will be on phone to Dr ninis sectary think she's back from annual leave now

Hi all ...just checking in and checking up !

My ds has "unusually" tight hamstrings(DR and physio quote) as well ....physio said it is what holds him together !!

Mild gut issues /IBS..tummy ache ..no poo ..then lots of "mushy" poo (his words !). But then ds1 had "problems" as well with ?impactation constipation (sp)...lot of accidents and messy pants which only really sorted itself out this year so not sure if that might be a family thing as opposed to anything related to EDS/HM.

Spoke to SENCO last week ..she seemed very happy that comm pead had recomended a S/A and suggested it was better if I applied rather than the school as I can chase things up quicker/better than the school

Abit scared of doing it as i have seen so many posts about how difficult it is and administration is not my strong point !!!!

But I know I need to try as I did an open evening at a secondary school the other day ..and it made me realise how many stairs there are at "big" school!
They did say that they arrange the time-table for less able/disabled pupils to be on the ground floor which is what he needs .

I know open days try to show you the whole school but....he was wiped out with the 2 flights up then 2 flights down(without a heavy rucksack and a 3 min timing to get to next class !)

I haven't jumped him on a year...he is yr4 ds2 is yr5 but we had to take and pick up ds1 so I thought I would stay and do the tour with SEN a bit more in mind this time as I would like him to go to his brother's school.

More blood due next week so results are ready for pead beg Nov...and still awaiting dietician app......

thc...good luck...fingers xed

at SENco's honesty bizzey . I suppose its better to know that you are in charge than leaving it to somebody that doesn't feel qualified able?
Big plus for you is that the school look like they will be supportive and not obstructive - which seems to be where a lot of the problems with SAs seem to appear. Just remember that if you come up with a glitch that you need to post on SN board as there are so many knowledgeable people. They will have you sorted and back on track in a jiffy!
Fingers xed for all of you with tests/bloods waiting appts etc.
Ds1 has his colour overlay assessment and a couple of other things at BO this week. Who knows the outcome. Must admit I think I will pee myself laughing if it works out that he needs the colour pink for lenses

aunt - at possibility of pink lenses

PDSS going to contact the secondary school to make introductions then I am going to meet Headteacher in one to one meeting and get a specific tour of school, to see if they could cope with ds.....bit nerve wracking!

Bizzey

Reason that better you apply Is you have right to appeal if turned down ( lot are at first ) where if a school is refused they then have no right to appeal .
They turn down loads I reckon see who has strength to appeal

Good luck with the eye test and . To at the possible pink lenses

Sparkle I know here open days are starting and its aimed at year 5 pupils as the current year 6 will have already submitted their applications . Am starting the rounds with Dd as well as 6th form with ds2 . Dd has choice of 3 high schools al within 10 mins walk but one get brother at is looking like favourite

If pdds teacher is slow I would just call and make appointments

Pdds teacher is going into Rio School tomorrow

Just checking in and offering hugs, and to those who need them. I haven't been around much as DS2 is still struggling with school. He is still on very reduced hours and suffering with tiredness. He's also struggling to settle and he has only gone in happily once. When I ask him why he doesn't like school he just says he doesn't like sharing toys but he shares at home and toddler group fine so I think it's something else. I've asked about having a 1 to 1 but the SENCO said there is no chance of that because his needs aren't high enough, even though physically he's like a 22 month old roughly and he is so tired and emotional.

Ellie tiredness seems be a issue with ds3 this year . Have you considered applying for a statement yourself also ask about referral to PD teacher team

Ds3 pd teacher is on the warpath school are being obstructive not followed things she suggested before he started but also not returning her calls she trying set up meeting with senco me and her . She even tried emailing them .

She agreed like last unit if he is tired out a 20 min nap is a good idea and be telling them they need to Aldo yoga is a no as it stretching muscles that already far to stretched .

Be interesting be fly on wall when she does get then

THC I do so love it when professionals around the child do battle. Should happen more imo.
OT wrote an official letter of complaint to DS1s first school. Strange that when we left the school didn't ask for an exit interview to see why we left