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.

He fell asleep in the buggy on the way to pick DS1 up from school on wednesday and I have to admit I went to show him to the teacher . Another mum saw him carrying his new book bag the other day and asked me about it. Like a lot of other people she did a shocked face when I said he was starting this september. With his wobbly walking/in the buggy, short for his age and napping at school pick up time most people who don't know him assume he is a tall 2.5 year old rather than 4. He's less tired and grumpy today so will measure his wing span if he'll let me.

Yeah Ellie we get that with Ds3 they are shocked Shen I say he is going to juniors this year . He is more reception size

Hello, haven't been on for a while. It's all been a bit full on with ds1's statement and my health.

Must apologise for not reading back today, but I did want to find the thread and try to catch up over the weekend.

Ds2 is continuing to struggle. Less falls now he is being more aware and careful, but lots and lots of sub-luxes and cramps and generally a very unhappy little boy.

School is continuing to be good about considering his needs though. He was in a school play this week and all of his class had to sit cross legged, but he got a chair and footrest. He is much happier at school now he can at least sit more comfortably and knows he can ask for pain-relief if he needs it.

Still haven't heard any more from the paed or physio dept, but I was expecting that really, given how slowly the wheels of the NHS seem to turn these days.

Hope everyone is bearing up - will be back to read and try and catch up with what's going on for your all.

Another quick update - in-laws visiting, so very little time to use the internet.
I have a friend who is a consultant paediatrician - but not in our pct. He basically told me that my paediatrician was talking complete b***ks, and that hypermobility and IBS are clearly linked. He also told me exactly what to ask my GP for to get genetic testing
I'm a happy lady today - apart from having to go to B&Q!

HI all ...I have been following just not joining in.but big hugs to all who need it !!

I have been having a funny few days/weeks with lots of thing suddenly "hitting" me ? Delayed reaction that Iam actuactually getting my ds assessed ?

Appointment is Thursday pm with pead (finally)...Last app didn't give me the answeres i was expecting so I think I have pysced myself up to answers this time ....but I have reminded myself of all of your lack of answers from proffessionals sooo...... we will just have to wait and see.

Someone asked what I was going to see the pead about ...and do you know ..there were sooooo many things I couldn't reply !!!! I have told my mum it is because he has lots of nose bleeds !!! Hope to sppek to someone soon as we seem to have gone quiet over here !!!

I know what you mean about things hitting you suddenly. DS2 is starting school in september and there is nothing like putting him in a room with 22 other children the same age to remind me how different he is.

I hope your appointment today goes well. I always find that if I don't expect answers then sometimes I will be pleasantly surprised and sometimes I won't but I'm not dissapointed. DS1 always goes to the hospital expecting to play in the waiting room, go to the toilet with the postman pat stickers on the wall and buy donuts from tesco afterwards. I quite like his idea of a perfect hospital appointment .

I really should take my own advice though. DS2 has his wheelchair assessment and I'm flapping about them offering us nothing or a massive buggy that's impossible to fold and will mean that the other children call him a baby. I've been waiting for this appointment for so long so I've had a lot of time to worry.

HI ALL Well a very good and productive visit to pead that only on here will it come across as GOOD NEWS !!!

Lots to tell just trying to get it in the order ...

1. x-ray taken of knees and we stayed and got results straight after which shows mild rickets but he will get orthopedic doctor to scrutinise a bit more throughly but he has put ds on vit D supplements which i was hoping for and expecting..

2)EDS and BJH confirmed....He knew alot about it ,I think he said he has 50 other cases under his care.

3)Now for the most interesting part as I know some of you have been told conflicting stories....he said there is a connection of bowle and bladder problems !! DS doesn't have major probs apart from alternating from constipation or "mushy" poo (ifykwim!) and tummy ache and been able to hold his wee for ever and then suddenly needing to go !

4)We have been refered to Genetics,rhummie and community pead and are due to go back to this pead in 4/6 months time .I have a blood form to do 1 month before app to check clotting issues.If they come up the same haemotolgy(sp) will come into play... Aparently nothing can be done but we need to be aware of it in case he ever need surgery and stuff.

The clotting and EDS are connected...

Speach problems and hypermobilty are connectd!
OH and tat blue tinge on suishy thumd base is EDS related which is what we thought..

So no surrises just confirmation that I am not a stupid mother and knew things needed looking into !!!

Well I think that just about covers it ...the rain has stopped ..the sun is out and I am going to pour myself a large .....early

Ok euphoria didn't last long ......I have just burst into tears .....is tht normal !?

Totally normal as is the HUGE glass of wine - don't worry - your amongst friends - all doing the same thing - love and hugs xx

Thank you.. xx

bizzey - its the relief that you are not going mad, and its not all in your head combined with the fact that your concerns are true and everything is real and has consequences. Cry away - its an emotional time.
When my friend the paed told me that DS1s paed was completely wrong and that IBS and hypermobility could be related, I could have hugged him. He reckons that it is the older, more set in their ways paeds that refuse to acknowledge newer findings. He did then ask when my paed was due to retire which is awkward as I know he knows her.
On the blue thumb wedge - I was looking at my feet this morning , and noticed that I also have a very blue area by the arch bit. Anyone else? Or is it just my freaky feet

They say anywhere with a high capillaery or veined area shows up far more on us EDS'ers - my boys chest, forearms, legs and base of spine all look like a road map!
He has a lipoma linked to his spina biffida occulta which is covered in veins and looks blue. Not nice!
When he is in pain it's these areas which seem to become more pronounced and many stick out - anyone else noticed this?

Yes ..ds has a road map on his chest as well ....with little round bruises for the roundabouts !!!

I am feeling better today and very positive

This thread has been a god send to me and I want to say thank-you for all the new information I have gained

Next step is to attempt for DLA but Iam keeping a very open mind on it !

Having problems with my mum on this one ...She doesn't want him labeled as "disabled" as "SHE wouldn't like it "...I have tried to explain that that is not what it means ,but she went into one of her "upset moments " so I decided not to explain any more !!!

I have played down ds problems with her as she still gets upset that my younger brother needs crutches to get around ....even though it has not stopped him having aVERY good life i.e lots of female friends !!!!!!

So I suppose that is why being on here has helped me so much as I like to do and get the pactical help instead of wallowing and feeling sorry for him !!

to you all

bizzey I just think that some people have a very old fashioned opinion of disabled/disability. Its all about expectations. I don't have any less expectations for a successful life for any of my 3DS. DS1 and to some extent DS3 have a few more challenges, but I don't expect any less - and I wouldn't dream of giving them any impression that I would.
As your brother knows - life can be good, regardless of dx
DS1s paediatrician doesn't like 'labels' - she just wants the correct treatments. I say fine, you get the referrals and arrange the treatments. Knowing that in order to get the referrals/treatments, she has to write to consultants to explain why he needs them - then I have it in writing.

I always find some older people have odd ideas about disability. As I keep explaining to people, DS2 is who he is, calling him disabled won't make him any worse.

Yes I think it is the word "disabled" which puts pre-concieved ideas into peoples minds .

We have a family friend who's son gets DLA because he has autism...I aked my mum if she thought was disabled ...her reply "Of course not ...there is nothing wrong with his legs .He walks fine "!!! ( at my mums narrow mindednes !)

I know she has had it tough with first my dad ,then brother having walking problems and now ...with her glass 1/2 empty outlook on life instead of my 1/2 full she is faffing about ds...and so I end up having to reassure her instead of getting support myself !!!

Oh dear sorry for rant...but I suppose she sees it that IF I get DLA then there IS "some thing wrong "with ds ????

Hypermobility thread has now turned into family counciling !!!!!!

I always say DS2 is "disabled" because to me that means physically disabled rather than learning disability. Then I say DS3 is "delayed" because he has less problems than DS2. Not sure how to describe DS1. I always expect my mum to know more about hypermobility and "the system" than me because she used to be a nurse and then worked at a playgroup for children with special needs. But the other day I was talking about DS2's wheelchair services appointment and I was saying I was worried we would get a buggy or nothing instead of a wheelchair and she said they wouldn't give us something that wouldn't go on the bus. When I'd finished laughing I realised I knew a lot more about what it's really like to have a child with disabilities.

(Wheelchair services appointment on monday so you only have to put up with my moaning and panicking about it for 2 more days )

elliejjtiny.....moan and panic away ! I wiil be helping you count down the hours till monday ......same time schedule as what I am doing to get the boys back to school.. !!

I think it is the word"disability" in DLA that she is getting confused with...I have tried to explain it is to "help".."cover "the amount of time I do extra things with him like physio/OT/speech and her reply.."well I have never seen you do physio with him "!!

Even though she knows I have alot of appointments with ds as she has the other 2 if it is after school !

So I think she is in denial...and I will just have to pick up the pieces as usual

Bit worried I am now going to become a little MORE over protective of LO now after "funny"incident in sitting room this morning !!

DS1(11) and DS2(9) played a game with him (bored sat am !) where they held him by ankles and wrists and played "rock-a -bye-baby" and threw him on the sofa !!!!(should be a shocked face now ...but it was actually quite funny to see them ALL laughing !)

Anyhow ,needless to say ...it ended in tears !!

I told them they had to be careful ..because otherwise they could end up tossing him but be left with his legs and arms in their hands and him on the sofa (what was I thinking about ! and then to make matters worse said he would have to be called "BOB" (old joke from childhood..."what do you call a man in the water with no arms and legs "....or was that just my wierd childhood friends ??? No offence meant to anyone )

Anyhow "BOB" and his brothers are going to make biscuits now with (having re-read this ..) a slightly deranged mother and then carry on with the physio my mum has never seen me ...ie.. making/kneeding/rolling out pastry to strengthen hand and wrists and then sit on floor with towel under knees to stretch hamstrings then ( massage them)..........OH DEAR I AM IN A FUNNY MOOD TODAY !!!!

Where has eveyone gone !!!!???

bizzey you're fine - just don't answer the door to the men in white coats, just carry on making the biscuits
DS1 was in the supermarket today and he saw a lad about the same age in a really good motility scooter - and he stared (I think in envy/admiration) . DH told him to stop staring as it wasn't a toy ATV (which is what it looked like), it was because he was disabled. To which DS replied that it was not fair as he was made to walk around the supermarket. A few aisles later and he was in his usual place of sitting on the floor, next aisle sitting on the bottom empty shelf, then leaning on a display of toilet rolls (not his smartest move) and then going to sit at on the chairs at the end of the checkout. And who kept passing us in his ATV?
DS will come to understand that even though he tires easily, he can walk, and exercise is good for him - as long as he doesn't over do it. The other lad didn't look like he had the option. DS's glass is half full.
Lol at the physio. DS doesn't realise that when I make him carry bags for me that it is 'physio' - he thinks I'm being 'cruel'

just checking in to say hi - we're back from a week in sunny Tenerife, doing nothing other than sitting by the pool, and strolling over to the bar for another cocktail .

Bizzey, you mentioned nosebleeds - was that just a throwaway line, or is there a connection - both DD1 and DD3 have horrible nosebleeds which I've never got as far as doing anything about, but if it was related.....

We spent a lot of time this week translating German (Tenerife is big on German tourists, and DD2 is in the middle of her German GCSE), and a sign in the airport was showing the area for "persons with reduced mobility" which in German was "gehindert" which literally translates to "hindered" which I think sounds nicer than "disabled" - I may start using that instead.

HI midnight..Glad you had a good holiday..(off to cupboard now to find some left overs to make a cocktail !!

No NOSEBLEEDS were not a throwaway ...they have been a problem of ours for a long time ..Ijust said it to my mum to keep her "happy" as I had them and in her mind-set "aren't serious"!!

Tricky triangle thing going on here so I hope I get it right....here goes ..

Prolonged nose-bleeds and Anti-coagulant problem are conected...

EDS and anti -coagulant problem are connected.....

Therefore he said EDS /anti-coagulant thing/nose-bleeds/ and bruising are all connected,,..

Did that make sense !!

It sort of makes sense to me in view of my ds's issues but maybe not connected to annyone else ?/

"Our" nosebleeds can last 30/40 mins or more(and uses an awful lot of toilet paper...cost too much using the nice soft tissues !!)

Whether they decide to cauterise or not I dont know I was taking in alot of information in one go ...and to be honest the least of my worries at the time !

He has got to go back for more bloods in a few months which includes "lupus anticoagulant " ? HA ha I have put my "?" but you know I have been googeling(but stil doesn't make sense !)

thanks bizzey, will mention it at DD1s appointment then.

There's so much stuff that's all inter-connected it's hard to know what is and what isn't! I thought that iritis (eye inflamation) was EDS connected, but Prof G said not, so I'm a bit more wary about what I put forward as "symptoms" now.

[cranks up the heating as it's COLD back here in England and there are no waiters hovering, bringing me food and drink ]

Another 'symptom' for me. Had my nose cauterised first in 1985 (or 86 - was a long time ago!). DS3 also has prolonged nosebleeds. Dr told me it was all down to 'nasal disturbance'. DS3 told it was likely to be part of his atopic symptoms (allergies,asthma, eczema etc) - most likely allergic rhinitis.
Bruising was also an issue for me as a child. So much so that apparently I was put on an at risk register. It was only found out when my aunt, who was a teacher, did supply in my class and was told. Needless to say, my mother, who was also a teacher within the same LEA, went ape. Ended up getting a Drs letter to say that I bruised easily. Still, I suppose that's what they did in the 60s/70s. And of course, there was no 'googling' then

DS1 has a note in his red book saying that he bruises easily. I looked over the GP's shoulder once when she was looking at my notes and it was written in big flashing letters that I bruise easily. I think that was put there when a practice nurse tried to accuse DH of hitting me.

midnight that holiday sounds blissful, can I come next time?

auntville...had mine done 1977 then again ?'82(not nice and can still smell the "match" up my nose) !!!!
On a serious note ..the brusing has concerned me with him at school ..so at least now I have "proof"that I have not been horrible to him !!

I did go to GP 2 years ago about nose and bruising but was given gel to put up his nose for 7 days and.....boys will be boys even though it was a wierd place to have a bruise.

EDS and bruising have connections so it makes sense that blood is involved as well...but...auntvil ds1(11) has propper allergies to nose (sneezing/snot/ and allergies and been to ENT for him and has NEVER had a noses bleed !!)

(Not part of this thread ..but just to give you a laugh...HE IS ALLERGIC TO DUST !!! Possibly this is not the best house to be living in !!) WELL i TOLD HIM TO LIVE WITH IT !! I will help him with his NUT allergy only as it was more serious !!

DS 1 and 2 both have asthma ..have had eczema but no N/B.

Hummm I am warbeling now arnt I ....and no pictures

Have none of you had the blood checks that I mentioned then ???

Have I suddenly stumbled across a gud'un !!!