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.

Sparkle, you are entitled to have a good moan - we all need to release the pressure valve sometimes.

We're having poorly dog keeping us up issues as well at the moment, that's tiring and stressful enough on it's own, let alone with all the other stuff you have going on.

My ds is not good at all today, I have feeling he may well be off school tomorrow. He spent over an hour crying on me last night, all sorts of worries and anxieties came tumbling out. Poor boy never complains, is so patient with his elder brother, who has AS and his little sister, who is - well a 3 year old girl, he is the good boy in class at school, always tries really hard and everyone says what a lovely lad he is, but it seems he's been internalising all these worries and stresses all the time and he's now full to bursting with it all. It's almost as if being taken seriously by the Paed has triggered him to finally start telling us what's wrong.

I have to go an book an appointment to see his teacher and the SENCO this afternoon, because I really think he's reached breaking point. Another one to add to the bag of guilt. I've been so busy getting ds1 assessed and statemented, all the time thinking 'ds2 is doing fine mentally, achieving well at school etc, so he's ok for now', that I've overlooked his needs. It's high time he was made the priority and we start to put his needs first. In fact its well overdue.

Oh moose the poor boy. I do hope the senco and teacher are understanding and supportive, the emotional issues are just as important as the physical ones. I too have overlooked a dc and now am racked with guilt about it. I spent so long trying to deal with ds that dd1 was left suffering in a horrid school with awful teacher, who in my opinion had real safeguarding issues to her credit....I should have pulled her out, I really should, but there we go. She is all right now, in a really good school with ds and doing well. Try not to let the guilt get to you too much, I know it is impossible to stop it all together. What is wrong with your poorly dog?

moose, auntevil and thc thank you so much for your understanding, and letting me moan. It is all a bit much today. THC I will try and find you on yahoo later, got to take dd1 to riding now....that is breaking the bank a bit too, but she is very good and horse obessed...am hoping it will provide protection from boys when she is older.

Well, from the response I got when I went to ask for an appointment, I'm not very hopeful. Got the usual 'we don't see any problems in school - he's absolutely fine here'.

Was also told I will be seeing all three of his teachers, which would be a good thing in terms of information sharing, but for the fact that one of them is ds1's teacher from last year and she was the one I ended up complaining about and who then refused to speak to me for the whole of the summer term. Had to do everything via the SENCO, so eg, if ds forgot to bring his homework home, I had to tell the SENCO and get her to sort it out, same for forgetting lunch box, drink bottle etc. Ridiculous.

My dog is an old lady - 13 years old - and suddenly developed incontinence last week, to the degree that she literally flooded the place every time she stood up. Vet has excluded diabetes and infection, but is still working on eliminating, cushings and kidney problems. Thinks its unlikely to be cushings, despite being at high risk due to prolonged use of steroids (she's not a bodybuilder - honest) so that leaves kidneys - or age/spay related incontinence. She's on propalin to see how it goes and I do think the leaking has improved, but she is still wanting to go out for a wee constantly - including all through the night.

What's wrong with your dog?

Had to laugh at being horse obsessed providing protection from boys - certainly worked for me! I had zero interest in boys right up until I stopped riding at 16 (bad fall, lost confidence etc). Met dh not long after I stopped riding and we've been together ever since! (25 years this year! )

HI EVERYONE..I have been following and sorry to hear some of you have been having a rough old time of it this week...how are the doggies ??..and your little ones as well !!

Well i went to GP this morning to get blood results..he wasn't toooooo interested in explaining them too much as i suppose we are now under pead who has to decide what to do next.

3 things came up....

1. severe vit D deficienty which i mentioned on here before..

2)Low RBC

3)Problem with his coagulation and have said with ? after them...inhibitor ? lupus anticoagulant.?....

still have to wait till june 7th to see a new pead (the other one was a locum)

but what i want to ask is ...do you think EDS and coagulation problem are connected..have any of yours had this come up in their blood tests??

I am happy i have got the results before June but now i have got try and not GOOGLE everything

Hope today is going better for you and something to put a smile on your faces..GP asked me if ds gets out into the sunshine enough..has he not noticed that we have a drought on and a hosepie ban ....which is why it has rained nearly every day for 2 weeks or more.....!!!!

TAKE CARE ALL

Moosemama how is Ds ANC you had talk with school yet ? And how's the DOg and yup we used to get the same thing from school to

Sparkle hope today is a better day xx

Got a call today Ds2 Gastro has phoned genetics hit urgent appoinemt for gentics and it should be next couple of weeks . He has also got in contact with Proffesor Pope office to and discussed his concerns and is happy if Gentics struggle dx to see ds2 ASAP but reckons Cambridge genetics be ok as he knows her

Bit of a shock and difference compared to the fight I had to get Ds 3 seen and his problems are sp much more obvious

Hi,

Bizzey, my GP told me that GPs aren't trained to analyse children's blood tests and only tend to know adult values. Mine always refuse to do it and pass it onto the paed, the one time one of them did they gave me the shock of my life by giving me a list of values that pointed to a very scary illness, they were way off!

I'm sorry I don't know anything about your dc's specific results, with my ds1 it's raised vitamin B (despite being a vegetarian and eating non-fortified gf food ) high eosinophil count and raised blood protein. No-one has been able to explain the results, as yet.

Ds2 is brighter since he offloaded all his worries. It's helped that he's looking forward to his birthday trip to Legoland this weekend.

Teacher didn't come back to me with a day/time for the meeting yet.

Dog seems to be a bit better so feeling a bit more hopeful that it might be age related, rather than anything scary.

THC, it sounds like things are moving along quite well, good that they are on top of it. Hopefully you'll have some answers soon.

Moosemama

Enjoy Legoland

Oh and on other news I let my impulsive side get better of me had toady what ifs this lady 2 weeks so I called up get ideas for prices For wdw for September 2013 and next thing I knew I was booking it

So me and Dd and Ds 3 are going and no they don't know and yes im like a little Kid

What's wdw?

Whatever it is, it's lovely that you've booked something that makes you feel excited and happy. I honestly thing we should all allow ourselves to be impulsive occasionally, it's good for the soul.

Nothing like having something great to look forward to to help you through the tougher times as well. Dh and I have a weekend at a music festival booked in May and we are soooo looking forward to it. Dd is coming along, but my Mum is having the boys, so whilst not exactly child-free, it will be so much more relaxing for us than having all three dcs.

When are you going to tell them?

HI
moosemama ,i thought he was being a bit off but as you say childrens results and adults are different and that is why we have peads !!

Have a fab time at legoland...i went last year and it is GREAT..is it your first time..if so advice..

Buy this photo voucher thing for ?£20 to get your soveniour photos on your "special"rides..you will want to buy them all (of your shocked faces!!) ,you order and collect at the end ...and 4d cinema is a MUST!!!!!

Thanks bizzey, I didn't know that about the photo voucher - we've been given some spending money by a couple of family members, so that might be a nice way to use it.

We went for the first time last year and had a blast. It's honestly the only trip I can think of that we've been on with the dcs and not had a single argument all weekend.

Dh had a bonus from work, so we've pushed the boat out and booked the new Legoland Hotel this year and the dcs are ridiculously excited about it. Personally I'm most interested in the all you can eat buffet for the evening meal!

Ds1 is desperate to see the 4d Star Wars and Clutch Powers? films. We didn't go in there last time because he's always been phobic about cinemas anyway and 4d sounded like a step too far, but he's really come on this year and can watch lego films at home, so wants to give it a go.

MOOSEMAMA ..Ican give youa"spoiler alert" on 4d cinema and film if you want ie where to sit ...whats his phobia?

Oo thank you.

Problem is, it's hard to say exactly what the phobia is. Until very recently he had never watched a film, not even one at home on the tv. So, his phobia historically has always been the film itself rather than the surroundings and cinemas are films, only bigger, iyswim. He now owns the Padawan Menace Lego film on dvd himself though and has seen it lots of times. He's also a huge fan of Lego DS games, so has decided they're films etc are safe to watch.

I am a bit worried that it will be overwhelming for him, so much bigger and louder etc. The 4d aspect doesn't worry me so much, as he has no binocular vision, so I don't think he will get much from the effect anyway.

I guess we need to sit somewhere suitable for a sharp exit if needs be.

moosesmama...hummm the 4d part of it is not all to do with vision which is why i am thinking you might need to be prepared ..

Ooo, is it sensory then, vibration etc?

He's a sensory seeker - loves lots of physical sensory input - does that help?

He's not great with smells though. He's got an oversensitive snoz, so if that's involved I'd definitely appreciate a heads up.

CLUES... we saw a lego film which included a fire being put out...water/smoke(dry ice)and burning smell (few mins) , foam bubbles and things flying around our heads and almost straight into our eyes..!!! I really dont want to spoil this for you BUT i was concerned about my ds3 who has a very literal/practical way of thinking ? and how he would cope while it was happening BUT HE kept reasurring me that it was not real !!!!!(i think i was the noisiest mummy screaming and ooohhhing!!!)

SPARKLE Where are you ?are you ok...?

moose - enjoy lego land

Hope all the sick dogs are better

DD (4) had her initial assessment with a physio today (she has only been seen by OT up until now). It was only a 15 min assessment at a childrens centre and she has said DD needs a more in depth assessment so now we have to wait around 8wks for it

She did say that DD is incredibly bendy esp in ankles, knees and wrists.

She said DD will probably be prescribed either some insoles or special shoes/boots to help her.

Also she mentioned that DD is very flat footed (is this common in hypermobile kids?? But as she is only 4 she is within the "normal" range as their feet are not fully developed till they are 5.

Thanks bizzey. Not sure how he'll cope with that. I suppose we can but have a go and sit near the exit, so he can escape if he needs to. Sounds like fun though!

I was wondering about Sparkle as well. Hope you're ok?

Hello simpson. It's so frustrating when you get referred on and have to go through the waiting all over again. 8 weeks feels like an age when you want/need answers.

I'm not sure about the flat footed thing. I asked the paed about ds's feet, because I have no arches at all (the physio I saw when I broke my foot/ankle a couple of years ago said they were the flatest she'd ever seen ) and wondered if ds was the same, given the way his ankles roll in, but he said that ds actually has quite a high arch when he is stepping, despite it appearing flat at rest. Not sure what to make of that - suppose I will have to wait and ask the physio people.

simpson 15 mins with pysio is not enough..ds had 30 mins and we had to give up because he had had enough...interestingly i still have not had app with OT.... but you had that before pysio ??

Ds has had inersoles since 3 yrs as i noticed flat feet but have deffo got better with these and piedro boots ..he is now 7 and has "ok" arches? but still undergoing other ,unrelated to feet tests..but still has hypermobility probs

Bizzey - I self referred for physio but the child development centre rang me and thought OT was more what she needed (???) so we had that appt first.

We only got the 15 mins of physio due to a new children's centre opening up and having weekly drop in physio sessions ( although you still need to make an appt).

Luckily the physio we saw today works in the same building as DD's OT so they had passed info on before appt so she had more of an idea of what to look for, physio will also talk to DD's OT before her next appt next Friday with her findings.

I guess my real worries are that she starts school in sept and I think will really struggle with certain issues (mainly lunch time and carrying a lunch tray as she cannot see her feet so likely to fall)

School have mentioned that she will need an IEP but not sure how soon to mention it to the school re my concerns (DD is currently at the nursery school to the school she will attend full time from sept).

Forgot to say physio was really bending DD's ankles/knees REALLY hard and it was tough to watch actually but it did not bother DD in the slightest!!!

Wdw== walt Disney world aka Florida and Disney my younger two always see advert and say one day mummy can we go then Dd being older says bit lot of money so when I get a job I'll take you mummy don't worry and had to many what if moments recently so were going

Simpson I would mention it now !! And google smart Step IEp to [ can't link as on phone {

But it shows the problem , what the goal is and what and who needs to do to scribe this

THC - you devil you - Florida here you come - they are going to be so made up.
Bizzey one of my besties is a pharmacist at a different local hospital to the ones where my DCs go. Apparently different hospitals can test blood to different guidelines (why?!) and this particularly can make a difference with childrens' results. DS3 came up with a huge % over the norm for B12 - usually found in alcoholics - he was 3 - and he explained that results had to be seen in context - other % results - what they had just eaten - if they were fasting - age - which hospital the results came from etc.
Simpson get the school told - one of the lunchtime supervisors can carry her lunch tray - or DD goes to the front of the queue and her teacher can sort this before going to their lunch. Or what about a class buddy that carries her tray first? I work at a school with a disability base. There are loads of DCs that can't carry trays. This is only a problem if they make it one. That goes for most practicalities for her in school - there are always solutions, just make sure they are aware of all the potential problems.
Moose defo at legoland - have a good time. I think our DS seem very similar. My DS1 looks as if he walks either flat footed (slaps his feet down when walking) or on tiptoe - nothing in between. He has an amazingly high arch - like me - and needs to have whatever footwear he has on to be welded to his foot to stop it flying off (shoe that is )
Love to all the dogs - from me and our dog - who loves all dogs, whether they like her or not

simpson..good point that auntvile made...at our school some yr 6 are prefects (ds1 is one (pride) and one of there jobs is to help at dinner time with mainly the younger ones but also who needs it...they carry trays/drinks/cut up food...they also "help" out in the infants playground and things........i think it would be good to start getting things in place now....as opposed to the first manic few days/weeks

auntvile..thanks for info...i noticed DR GOOGLE has diff guidelines to my result sheet as well !!! I wiil just have to be patient till 7 June

Moose want an update when you are back !!