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.

Thank you IshallWearmidnight that has helped me getting my "list"(all 4 pages of it!) into order

I think midnight's advice is good. Following that I would split your list into physical and learning. Under the physical you could then briefly explain your concerns about hypermobility...I would name it to them, and point out why and briefly including the exhaustion. Then separately I would address the learning ones, also telling them what school has noticed.

I wouldn't go into where you have got your info from, some drs are fine, but some get uppity about google etc. My ds' community paed is quite good and regulalrly says "I don't know about whether that is part of eds, I will have to do some research" and then does. His rheumie paed is nearly as arrogant and dismissive as her rheumie colleague..we normally have both of them together in ds' rheumie consultations.

bizzey I would also write down all the basic information that they will inevitably ask. They go from how was the pregnancy, birth, feeding, milestones, sleeping,playing, speech milestones, family history - which is a good time to bring up any relations that have similar issues and other generalised questions. I always find it helps if you can reel it all of without having to work out ages and dates - makes me feel better prepared.
I agree that you need to know what you're going in there for. It seems to be the question that most medical people ask ' what would you like me to do?'
Can I also add, that if you go and you are not happy with the outcome, you have the right to ask for a second opinion. When you get a report of the meeting, check it. Often what you say in conversation is not written accurately, or taken out of context. Get it corrected, as this report will go out to others involved - particularly if referred on.
Recently a report on my DS had several of these glaring mistakes. 'DS rides a bike" - what was actually said was that it took a very long time, he is 9 and only just off stabilisers. He struggles to combine foot action and steering - you get one or the other. I said that I never envisaged the day when he would be able to cycle on a public highway.'
Too often paeds make generalised assumptions and do not see your child as an individual case.
Rant over

Thannks all really helpful.

ha ha

Hi there sorry to gatecrash, as my Ds is not showing signs of eds (fingers crossed), but I do & wanted to ask...

Do you /your children have consultant help/ monitoring in order to manage eds, & stop deterioration?

It all seems very much diagnose & discharge to me, which doesn't seem right?

Anybody have a consultant they are under for follow up appointments?

Ps just told my parents today that I have eds iii & have become very disabled, & that my sister died of type iv, tough day so excuse the gatecrash please!

HI doublelifeisalifehalved..sorry your having a bad day i have not got any propper answers for you as i am due to go peads on wednesday and will keep you all up dated ..ps you are NOT gatecrashing...

I am still new but others i am sure will help

Oh doublelife, you are so not gatecrashing, you are very welcome. I was dx when I was 18 with hypermobility, later revised to eds when I was in my 20's. My ds was dx when he was about 20 months. We both have regular follow up appointments. I see a lovely rheumatologist, who specialises in connective tissue diseases, every 4 to 6 months. At these appointments she reviews by bloods and urine samples, examine my joints and periodically sends me for xrays, ultrasounds, ct scans mris etc to keep monitoring me. I also see the gp every 6 months for medication review, for my eds related asthma and mirgraines.

My ds sees a community paed, and rheumie paed, and a rheumatologist, (every six months unless we need them in between) a physio every 3 months, orthopaedic surgeon every 6 months, orthotics every 3 months or so, and a clinical psych every 3 months or so. Not everyone on here has the same experience as us, and all these professionals are not especially helpful or supportive, but we do see them and there is no suggestion of ds being "discharged"...ever.

I am so sorry to hear about your sister. You must have a double genetic whammy of eds, as there is no evidence that it switches type or mutates in that way. I am sorry you have so much to deal with, and your parents. If we can help in anyway please just ask.

buizzey what auntevil says about recording dates etc in your notes is very important, I should have done that last week when we saw the rheumie, although it probably wouldn't have improved his helpfulness. Lol my mum says she thinks the rheumie mannerisms is actually his best attempt at a bedside manner....god help us all

DS2 was discharged by the physio when he learnt to walk as they said that the purpose of physio is to get a child walking and once they can walk they don't need physio. He sees the paed once a year but she is planning on discharging him next visit when he starts school and the school will take over as his "main" proffessional which I'm not happy with. The SENCO at school is brilliant and she has a disabled DD which I'm sure makes her more understanding. The reception teacher told me that she was sure DS2 would learn to get out of the way in the school corridors when I told her that he refuses to get out of the buggy in the corridor when I drop DS1 off because he is terrified of being knocked over. He had an assessment at preschool where someone came to observe him and the pre-school senco said he didn't often get tired and I said that was because I always kept him off preschool when he gets really tired, he only goes 2 mornings and he sleeps for 2 hours in the afternoon. The lady doing the assessing said that all children get tired when they start school and gave me a patronising smile. DS1 was exhausted when he started and he is normally full of energy, stopped sleeping in the day at 6 months etc. I know DS2 won't cope with doing the same hours as the other children.

Sorry for the incoherant rant. I'm just panicking that nobody seems to take my concerns seriously. It doesn't help that he doesn't have a proper diagnosis as the paed neurologist diagnosed him, DH and me with BJHS and said that it was the same thing as EDS type 3 and the paed said she didn't think he has EDS because he also has profound hypotonia, she thinks it's a rare genetic condition that hasn't been discovered yet. So on official forms etc I can't put EDS on them. Although if me and DH both have EDS than if DS2 got the EDS from both of us then he could have EDS that shows symptoms slightly different than someone who got it from one parent.

Hi Double

Yes we have a whole host of people involved in ds3 care sometimes i think way to many and none are good at talking to each other .We have

Physio every 6 weeks plus were about to try rehab in GOSH
Ot 4 -6 times a year
Rheump
Community paed
Wheelchair ervices
hydro
SALT
genetics
Nerologists
opticians as his type affects his eyes
Orthtics
Proffesor POPe wants to see him yearly he is a diagnostic mainly so unuruall to get follow up yearly but he is intrested as ds3 is rare type

but it has taken long time to get the right people ,Mind not impressed with GOSH
ellie

ds3 has very severe hypotonia and myother 3dc and me have Eds3 and ds 3 has muateed to something else and queray weird chromsome stuff going on but he does have dx of EDS6

Ds3 does walk but it is a very odd gait and can not walk far also running is very odd to and more stumble

I have EDS 3 and paraplegic (~ part down to eds art down to shit bad luck have spinal cord injury but intresting is that i been discharged by physio as they cant do owt so cant cure your written off)

thats crap wish you could meet my DS3 he is so floppy its daft even at almost 7 he has supportive seating at school and home as so floppy

AHHHHHHH Big rant on it's way.......pead app been cxled now have to wait till 27 March ..and why oh why did i not have the guts to do on line app for 2ndary school...people know NOW and i have to wait for post tomorrow stupidly thought 1 extra day wouldnt matter....cann't even contemplate dinner ..might have to do take away......am breathing now ..rant over!!!

Breath bizzey breath!!!! Frustrating I know to have the appt cancelled, i wish they didn't do this cancelling on us. At least you have the new appt and although it is another month away, it is only a month....awful as that is.

I have my fingers crossed for you for secondary school letter tomorrow....! [nervous emoticon needed]

Ellie that is the biggest load of rubbish I have ever read....not you obviously but the paed, the physio and the reception teacher. Who was the person doing the assessing in preschool. If you rate the senco then hopefully with a little persuasion from you, you should be able to get a care plan in place which will cover seating supports, managing corridors etc. Do you have a physical disabilities suppprt service in your area, the senco will know? Personally I would write down eds plus on forms!

If its any consolation bizzey I am meeting with our PCT to discuss a complaint about appointments. I will add anecdotal comments i've read on here to let them know exactly the effect the waiting has on parents/carers. double I will be asking those kind of questions at this meeting as well, I will share their 'collective wisdom' with you after the meeting.
ellie Some kind of school if they'll let your DS get side-lined in the corridors. At our school it is drummed into children from nursery up that you move to the side for those less able - It works right the way through so that yr6 will move to the side to let yr1 children through etc - as they are smaller.
THC It makes me so angry that just because they don't have the skills to make a difference now that they don't bother. Who knows when they will find some therapy/treatments that can make a difference - they should be keeping you informed of clinical trials etc and trying to find ways to help.
bizzey second sparkle's [nervous emoticon] . What time does your post come? I've always done on-line as the post here doesn't get to us some days until after afternoon school run!

Thinking of you bizzey, fingers crossed. Only cure I have been told for this type of situation is copious amounts of .

Ellie we are just starting out and talking about physio. Ds is 4 and met all milestones, if a little bit late on some. They are not telling you the truth at all.

We have a service called the educational service for physical disabilities who have been in to preschool to assess ds so can arrange equipment for school (writing slopes, pen grips and specialist seating). Parent partnership advised me about them. Would advise may be contacting your local parent partnership for advice.

I also panicking ds due to start in september and trying to get everything in place so that hopefully will like school. Everything so different to how we thought it was going to be.

Thanks all..I am about to start on the medicine now..take away pizza and garlic bread eaten..
i have cut big oranges up in to 5's each...does that count as their 5 a day.. it's
all i can manage.....it's like xmas eve ..the sooner i go to sleep the sooner it will come

Not officially bizzey - but there's grapes in the wine (another 1 portion) and if you go for a G&T, you get 1 for the juniper berries, and 1 for the slice of lemon. Other preferred choices include the cherry on top of bakewells, and the cocoa bean in chocolate. Isn't sugar cane a vegetable?
But hey, I've just noticed, pizza (has to have tomato), garlic bread (garlic), orange (doh) and 1 G&T should cover it

Sorted..5 G&T'S SHOULD GET ME WELL INTO MY 5 A DAY!!!!!

Oh dear..he can remember his 10x table done today ...but cant do 2x table now!!!!!!god help us when we get to 6x..7x..8x..9x...

aunt to be fair I have my finger in pulse about anything new .lol spinal forums are very quick to share things around from uk/europe/us and Asia I tell the physios and gp locally and to be honest i dont have the time for pointless physio as such for me

bizzey i remmeber school wait

hmm 5 a day , thats vodka and orange juice , cider /lemmon in the whiskey /cocinut in the rum and punch .and aracetoml for in the moring

Thehumancatapullt...your 5 a day is much better than what the goverment recomend..!!!!!

Though may impair my driving skills :p

Sparkle how's Dh new Job , how is Ds any more luck with rheumo

Bizzey - I read your description of your DS to my mum. It is so accurate regarding my DS too.

I am still struggling to think of what type of help he needs as he has been struggling for so long on his own. I am sorry to hear the appointment has been delayed that is really out of order and irritating to boot.

Re: physio. my DS has always been rather underweight (he now has a gastrostomy) however we always put his failure to reach milestones down to his weight. Seems as now the milestone are getting further away (I doubt DS will be riding a bike anytime soon) that we are looking for intervention. We are hoping that the physio will help ease his pains and give us exercises to get the ligaments to be strengthened. Or am I being hopelessly optimistic?