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.

THC - hope he is feeling better soon....hospitals are filthy infectious places....poor boy. I have only been to UCLH as on out patient for Prof Grahame...been an inpatient at St Thomas' which was lovely though....ahh sparkle reminises about previous tours of London Hospitals....really really must get out more!

Orthos are useless in our experience, no idea about eds and anything which is different from the normal skeletal structure amd soft tissue has flumexed them. Even the nice Ortho at Royal Orthpaedic hospital has no idea about eds and hypermbolity and just refers to it in temrs of what is normal for "normal" people, which clearly doesn't fit ds at all....with himbeing so special

Gp referred us to orthotics for ds' feet, they do still make shoes (well hald boots) and the piedro boots and offer them on the nhs. We are cure=rently trying srch supports dna lifts for ds, and then buy largest clarks shoes we can find and orthotist will then stretch them to fit without damaging his little toes....that is the plan, if that doesn't work them nhs shoes for ds it is! We are going to collect the lifts and supports next week.

Ds will be 9 next week, how did that happen.....? He is doing ok at the mo, he is happy as I have written to school and said he does not have to wear his collar at playtimes anymore, unless he is in significant pain, or he wants to.It is like giving him a whole new freedom. We did it because he spent very activie easter,
swinging, playing trampolining with no collar on, and then hurt his neck whilst walking up the stairs...it is so unpredictable, wearing the collar doesn't prevent it as such, and it can happen any time anyway even doing the most mundane of things, having the collar off is good for him psychologically and promotes the muscle and lugament strength......hope wemade the right decision [worried emoticon needed]

half boots not hald boots.

So, a week till DDs appointment - what is likely to happen? (initial referral to rheumy). Obviously talking about symptoms and family history, but she is stressing about them "looking at bits of her". There was mention on the hypermobility forum of needing to wear decent underwear as they needed to see bones and skin, and I think DD would need to be prepared in advance for that happening (understandable teen self consciousness)

Also, should I be preparing a family history of similar symptoms, and if so, how far back and wide should that be? Eg DH niece is very bendy, my DM was born with a dislocated hip, or just direct parents and siblings?

Anything else which is likely to be helpful? I'm going to take copies of the other hospitals reports and tests as I'm not sure what the GP sent through (if anything).

For dd this is really important as she feels she'll stress less if she knows what she's got, and less stress = less fainting = more normal. So I need to make sure I have as much info to hand as possible I think

yes chances are they will need to look so maybe wearing shorts underneath if dd is self concious

sparkle pleased to hear ds is feeling better

and well my pickle hass spect best part of day at UCLH after collapsing in physioand Sue having to carry him down and admittered worried but seems may be new form of epelepsy for him so needs urgent EGG and MRI under uclh

hello everybody hope you are all doing ok (sorry have not been able to read and catch up)

I had my caesarean last thurs and had a lovely little boy Thomas, he had to go straight to the neo natal intensive care as he had breathing difficulties due to fluid in his lungs and he is still there but they have managed to reduce his oxygen a bit and he has been on a course of antibiotics. He is being tube fed (was having only iv fluid for first 3 days) and seems to be keeping milk down.

It has been a really really hard week physically and emotionally, cs went ok (had to have him earlier than expected at 36 wks as i had placenta accreta and my womb had thinned so much they admitted me for a week before as they seemed convinced id have a massive bleed-luckily i didnt).I have not rested at all was up and about the day after as i had to get to the nnu to see him and they discharged me on sun so it has been an endless round of backwards and forwards to hospital every day,expressing milk and taking it to hosp late at night/early in morning etc.

I will try to get back on at some point to update again.

THC - OMG how is he...poor little man, as if he didn't have enough to deal with. Was the collapse brought on by the virus he had picked up? I do hope he is all right and you are too. Is he having his MRI and ECG today. I am thinking of you.

Ariane - Congratulations! Welcome to the world litttle Thomas. I hope he is doing ok and will be able to come home with you very soon. What was his weight? It must be horrible not being with him all the time, and having to go up with expressed milk.

Midnight - I would agree with THC and say they will want to examine her, and look at hips and shoulders etc, so if she is feeling shy a little bra top thing and some shorts type knickers may be a good idea. I would draw out a family tree, very roughly and note symptoms, I would go back to Grandparents and include uncles and aunts and cousins, but no further. If you scribble something down like that, they can either take a copy of your notes, or make their own and you won't foget anyone. When Prof G took my family history he included my grandparents, uncles and their children as well as my sister.
I think it is worth saying to them that dd would feel better with a dx, as she feels it will give her and explanation she can cope with.
They should do a family history, a physical examination, measuring her height weight, arm and leg length, measuring the degree of flexibility in each joint, ask which joints there has been pain in, for how long, evidence of swellings or redness if any, they should also ask about things like asthma, gastro symptoms, bruising, scarring, stretchmarks, time to heal wounds, headaches, dizziness, fainting etc. They should take blood pressure, listen to heart and may take blood too. hope that covers everything.....

I just slipped on the hall floor, and banged my shoulder, which has been painful for days now, and I haven't made it better!!!!! The floor was wet from the rain...what a Klutz I am. Also very stressed about my MIL, who is foul to me at the best of times, but seems to be surpassing herself at the mo. I know I shouldn't let her get to me, but I am finding it really hard not to get upset by her. Shall have a and see if I can push her to the back of my mind.

sparkle lol at tour of london hospitals. When I was pg with DS3 I was at the antenatal clinic and the midwife asked DS1 if he liked the little play area in the waiting room. I don't think she was expecting the comparison of several different play areas in our local hospital and one of the hospitals in bristol . The day I was meant to be induced with DS3 (he came naturally in the end after waiting for a bed all day) DH and I walked round the hospital with me explaining the pros and cons of the different toilets, cafe's and shops in between contractions (also need to get out more) Hope your shoulder feels better. I keep tripping over ds1's wooden railway, ouch. It's DS2's birthday next week too (friday). Can't quite believe he will be 4.

ariane Congratulations on the arrival of Thomas. It must be so hard with him being still in hospital though. When DS3 was born we spent the whole of DH's paternity leave going back and forth to the hospital with DS3 because of his feeding problems and weight loss and it's so draining.

midnight no advice but good luck with the appointment.

THC how scary that must have been. Hope the MRI and EGG get done soon.

@ your tour of hospital facilities, and ds3' comparsion of play areas. My dc all navigate the different hospitals by the play areas and murals on the wall too!

Arians congratulations on the birth of Thomas and hope he's home very soon .

Funny enough ds3 also knows all the best playareas in Gosh and invetween session we normally hang out in xray

Well after bouncing back and forth to UcL with UCL saying well he's s patient at Gosh they need to treat and Gosh saying no he is only in for Rheumo were not A&E , so yesterday ucl called jn for urgent egg as seems not bug he's having seizures . No resultsyey but they were still surging who treats he collapsed in foyer waiting area in Gosh and crash team were called to him he was only semi conscious after for 4 hrs at first once stable they talked about transferring to ucl bit finally one consultant saw sense and said no he stays here and were get our neuro team involved

But discharged from Physio hr never completed rehab because the first collapse scared them to much and everyone agreed this needs take priorty

I am so frustrated on your behalf THC that GOSH and UCHL have done so much responsibility shirking. Hopefully now GOSH has taken control you will get some help....but what is happening? He hasn't had any of these episodes has he, I don't remember you mentioning them, so what on earth happened in the physio sessions...? Only semi conscious for 4 hours, you must have been desperate with worry. How is he now, is he fully conscious? Is he on a ward somewhere and what is happening with your other dc? am very worried about you all, let me know how you are when you can. I am thinking of you and wishing I was closer.

Were on a ward but being transferred to another hospital but it be easier for people to get to us

We need cardio input to as they are not sure of causes

Though on the positive side Sue is going to request that the PD team go into school

We will see them June in clinic but no rehab till they know what's happening

Oh and he is bright as a button now and Dr said if had not seen him yesterday would not believe it !!

How confusing, and mysterious iykwim! Are they going to move you closer to home? I wonder where the best paed cardio unit is apart from GOSH? I am glad he is bright and ok at the moment.
Also good news about the PD teams going into school, that will make the LA sit up and take notice, may be add some extra funding too! Or am I being too hopeful there?

paed cardio would be the Royal Brompton I'd have thought? The electro physiology team there are (mainly) great, particularly the nurse specialist. The locum consultant wasn't hot on PoTS, but that gets shoehorned into all sorts of different areas, so I'm not too fussed about that any more.

Thank goodness he's a bit better now thc.

ariane congratulations on the arrival of Thomas, I hope he is getting better and is able to get home soon.

THC why can't one hospital take full responsibility for your DS's care? It must be really draining having to deal with both, as they keep passing the buck and I can imagine you just have endless appointments! Glad your DS got over his bug. It sounds like there are several departments (cardio,rheum, orthos and now neuros) but no real progress. Is all of this because of the EDS in his spine or is it separate? Sounds like he has had a really rough time of it lately.

We are due to start hydrotherapy today. We had the physio round our house yesterday (CF related) and DS said he'd been getting pains in his ankles but she just said it was BJH related and that he would need to rest his joints after exercise. This conflicts with the other physio who said that he didn't have BJH in his lower limbs?! I feel a bit lost with just having the phsyios involved as they don't seem overly concerned about the pains. He is wearing his trainers all the time on their recommendation, and we are still doing the exercises which will hopefully help. It just feels like progress is slow.

Reindeer - it is our experience too, that physio is a very slow process. Ds was probably doing it for 2 years before we saw any improvement, but we have seen some improvement in core strength and that has made a difference. Have you tried gently manipulating his joints to see if he is indeed hypermobile in his lower limbs? remind me what stage you are up to in terms of seeing a consultant for his hypermobility? Sorry to be vague...tis my old addled brain.

We haven't got an appointment to see a consultant! We are only seeing physios because I asked our CF physio for an appointment with an BJH physio. Our consultant didn't even know what BJH was (kept saying that's a school issue?!) so he won't refer through.

I'm hoping the physio and hydro will help but at the moment he is in agony after exercising and they are giving us no answers.

How do I manipulate his joints for BJH I have no idea how to do that. Physio just looked at his legs and knees and said he didn't have any problems with his lower limbs.

Have a look on the Hypermobility association link( I will find it for you) and it talks about hypermobility of certain joints. For instance if the knees can move backwards so the leg looks like it is beginning to bend the wrong way, this is hypermobile. Have you tried to go your gp and ask for a referral to either a paediatrician or better still a rheumatologist?

www.hypermobility.org/beighton.php

Had a phone call today to say that DD's OT is going in to her nursery school on tuesday at 10.30 to help her and for her teachers to get more ideas of her weaknesses and how they can help her.

Our local children's centre has a drop in physio session (although you need to make an appt for it ) and she is being seen by a physio next friday afternoon which is all good

Hi all

Thomas(ariane)..welcome to the world..
ariane ..hope all is well and congrats.

Have not posted anything as had nothing to say/inform
Still waiting for bloods results ..they have not got passed on and no ans from sec at pead service...so might as well hang on to 7 june..was feeling down but he came out of school today and said it was the best day ever..for lots of things..glad that he is happy....so not much use to any of you tonite..bit down... just want answers and they are not coming....

Thank you so much Sparkle, I have looked at that and will test DS's ligaments tomorrow. Hydro therapy went really well, he had no co-ordination but he worked really hard and had fun too.

I will try and get in with the GP too. I'm not a huge fan of the GP but I can't see me accessing the help any other way. I also have to chase the OT assessment as we haven't heard anything for three months.

Hi Sparkle and co

Ds2 has his first appointment re his hypermobile joints this week, but I have just googled and found out that the guy we are seeing is a Comm Paed with specialisms/interest in Paediatric Immune Disorder, meningitis and allergy.

I'm assuming they've just shoved him on the shortest Comm Paed list, so am not expecting much in the way of any help from this appointment. Hoping at the very least for him to pass ds on to someone more relevant.

Who should I be pushing for him to see?

He has been really struggling just recently. We instigated the fall-log at school, but as soon as he started doing it he became more aware of his falls and started to be less active - hence less falls, so less evidence, iyswim. However, he is now in a lot of general pain, ankles, knees and more recently hip flexor type pain. He's also started getting seriously bad foot cramps again. He also seems to get sudden pain in his knees even if he is just sitting down.

The other day the side of his kneecap literally just touched the table leg and he screamed the place down, not because he bumped it, because he didn't really, but because he said it hurt inside and it was the worst pain ever. I asked him how bad out of 10 and he said 10.

Poor kid is literally at screaming point almost daily with one thing or another.

ariane - big big welcome to the world Thomas. Bet you can't wait to get him home and start some 'normality' - whatever that is with a newborn!

THC - serious butt kicking needed between GOSH and UCHL. Children's health should be paramount over their domestic squabbles. Fingers well and truly crossed for good results from EEG and MRI

bizzey keep the faith - 'tis a long road ahead.

DS complains daily of pains moosemama . I felt really sad for him the other day, he was doing some extended writing at school and his thumb got 'stuck' - and he couldn't move it. It really 'clicked' when I had a good investigation, then it was fine. I asked him why he had not said anything to his teacher. He said there wan't really an appropriate time . So he had been sitting there for the rest of the afternoon, in pain, saying nothing. Grr, he drives me mad - I'm only down the other end of the school !

I had my meeting re the poor service we have received - and hopefully, apart from apologies, may have got somewhere. Bad news is they have lost 'most' of DS1s file (I'm not suspicious, but.....) good news is that they have a huge list of my queries, and have promised an answer to all of them, face to face next month. Now I appreciate that they may not be the answers that I want to hear, I'm a realist, but, there was further investigation into DS1s hypermobility and genetic links with DS2 and 3 that may be causing similar issues. I will be glad to know finally what they are planning to do.

we moved hopsitals rehab is stopped and phyiso made ot clear that they do not want Rio back till we have a reason for the collapses as it never good sign when omeone who i anti boots/splints wheelchairs carries your c hild

though intreting and i disagree with this strongle kids that try to go to sleep in the afternoon session are told they are naughty