Neighbour making formal noise complaint.

[Seagazer]

The internet school sounds like a fantastic solution to the problem, and it's great that you are all so involved in it.

 

Sorry about the elbow and the thumb

 

Just found out that YS has a small degree of hypermobility, he was at osteo for a problem with his achilles tendon when we mentioned his painful rib, apparently 3 of them had moved and were affecting his vertebrae somehow (didn't quite understand what she'd said). He came out and said 'oh that feels so good, its been hurting for ages', poor thing. I know where we will be going back to next time he complains.

[Lesley]

Lauren says Bonjour!

 

........and thanks for all the replies. Good to hear that others are doing well after Home Ed.

 

I know only too well what the rib pain feels like - glad all is well with your son now.

[bluekarin]

Sorry to hear about the thumb and elbow but the online home schooling you've found for her sounds fab, and I'm glad to read she is smiley, despite everything. School do seem very slow to help with ongoing problems. We've had the same problem with my ED with her heel problem. I asked if there was any way she could do her classes downstairs instead of trying to climb 2 or 3 flights of stairs with crutches, and was told no. But a friend of hers who actually broke her ankle, was allowed to do work on the lower floors I have a feeling they thought she was making it up with regards to her problem.

 

Hope Lauren continues smiling and enjoys her online classmates

[Lesley]

It's difficult to know what help there should be isn't it.......and no-one wants to tell you.

[Lesley]

Lauren was back at Stratford Minor Injuries on Tuesday after subluxing her ankle - fortunately, it didn't require any treatment at Warwick. She also had her appt. with the consultant at Nuneaton yesterday. She confirmed that Lauren does have POTS (after we'd suggested it was a possibility). She also said that this phase will last for years not months before it settles - if it settles at all She now has her thimb in a splint and a crutch to help her hobble around.

 

Lauren has been referred to GOSH which will be a great help. We bumped into one of the inclusion team when we took Lauren to physio today - my daughter has been trying to contact her for weeks with no luck She was shocked that the school has still not provided any work for Lauren - fortunately, the internet school is going well .

[Egluntyne]

Good to hear that the internet school is working out.

 

Sorry to hear the about the ankle.

[Lesley]

I forgot........

 

I've also had a diagnosis now - EDS-HM (type 3) Moderate to mild. It would have been classed as moderate when I was younger but is milder now I'm becoming older and a bit more creaky as opposed to stretchy and bendy!

 

My daughter (Lauren's Mum) and son have been diagnosed as having mild EDS-HM(and son has ?? - but only because the geneticist doesn't always listen and also notes things incorrectly). My mother is next to speak to a geneticist but she will be referred by her GP as she lives in Anglesey.

[Seagazer]

Its good that things seem to be getting sorted. Sorry about Lauren's ankle.

[penelope]

Hi There Lesley

 

Thanks for the pm. I have just sat & read through your fun & games.....It all sounds very familiar & a "normal" week for us!! You just wish you could have a break from it.

 

As you know my daughter, father & I all have EDS 3 .

 

My daughter has been on the 2 weeks inpatient at GOSH & it really made a huge difference. She could not run anymore before she went in there as her ankles were so bad, she was in constant pain from her spine & her knee caps were slipping all the time.

She has worn either Cat boots/wallking boots or nike baseball boots since & her ankles stay in place now.The O.T at Gosh gave her a lot of help to pass on to school, & it was great for her to mix with lots of other kids with the same.

 

She has a wheat allergy & allergic/inflamatory bowel disease........also common & underdiagnosed in EDS.

She fractured her wrist a couple of months ago by bending it backwards.

 

I have had about 5 years of a constant dislocating shoulder( turning over in bed and waking up in agony is usual) I have been having rehab at Stanmore & gradually with using bio feedback, a brilliant shoulder brace & 5 years of hard work & physio it stays put most of the time & hardly hurts.

 

I have PoTs as well so I can symathise with her. It has taken about 5 years but this too is far better & I hardly pass out with it at all. The blood still pools in my feet & legs but with the compression tights/leggings it helps .I am no longer taking medication for it, just drinking water constantly & have to have a lot of salt in my diet.

 

I have also subluxated ribs,snapped my cruciate by standing on 1 leg! dislocated my knee many times,done all the ligaments in both ankles( find out on tuesday if I need the rt one operated on to have them replaced),have lots of hernias. The most serious thing I did was I ripped my thigh muscle from my pelvis & tore into the muscle as well....I had such a major haemhorrage as I also take warfarin. Had blood transfusions & was on a different planet for 3 weeks while I was being stabilised. Oh yes & I have degenerative disc disease & had spinal fusion & disc replacement.

 

The reason for droning on & on ( if you are still awake reading this!!) is that it WILL all get better very very slowly if you can find the right ballence of physio, bracing,etc. Sometimes it will be awful & like ground hog day but it will change.

 

If Lauren would like to Email my daughter I am sure she would love to talk to her. We have recently met another Lauren with EDS & they have really had a good time chatting.

 

If I can help at all with any info please do contact me.

 

Lauren sounds just like my daughter in that she wears a bit of a brick wall around her so that she dosn't show how much it hurts. PLease give her a big(gentle ) hug from us fellow wobbly ones & tell her She is doing a brilliant job & things will improve slowly.

 

She is lucky to have such a fab Granny,

Take care

 

xx

[Lesley]

I'm still awake! - it's great to hear from others who have these problems. My diagnosis now is moderate to mild, hence the late diagnosis. You've certainly had your share of problems to cope with!

 

I've just heard tonight that Lauren had her shoulder brace on Friday.......and won't wear it as it's uncomfortable I'm taking her to the physio tomorrow so we'll see what she says - hopefully, she'll tell her off . Lauren has always hated tight clothing of any kind so we could see there would probably be a problem. Lauren also had a problem with wheat intolerance but started eating it again at the end of last year - she's been OK on small amounts.

 

I'll sort out email details and PM you.

 

(PS......I'm Grandma.......I feel old enough without being called Granny )

[penelope]

Hi

 

Whoops........sorry about the Granny! Its funny but my mum hated Grandma as she said it made her feel older than Granny.

 

You are a lovely caring person so who cares what we call you!!

 

We both have the tight clothing problem but the omi train shoulder brace that I had was the only one that kept mine in place while I was retraining the muscles where to be. They were pulling it out of joint in spasm.

 

Sorry she is having such a tough time. I found the EDS website quite helpful while we were going through it .

Take care

 

X

[Lesley]

I dread to think what some people call me

 

The physio and the ortho lady have agreed that the brace is slightly wrong in the front underarm area - it's difficult because Lauren has put on that bit of weight. They advised that washing it should soften it slightly and if it is still uncomfortable then it can be altered. She has been measured for the hand splints now that she has been out of plaster for a couple of weeks and she's also been referred to the orthotist because her ankles are very week and she rolls in on her feet. She is off to see the orthopaedic consultant in Oxford on Wednesday.

[Seagazer]

I wish her well Lesley and I hope you manage to get the brace sorted out.

 

Our osteo has noticed that YS rolls his right ankle in so we have to keep an eye on that.

 

I got the book you suggested and read it, very interesting and explains a lot for me and the children about various things that have happened to us. As I've said we've got it so very, very mildly but even that can be literally a pain. I'm going to pass it on to my brother's family as both of the children display hyper mobility tendencies and my nephew has had two broken wrists now (he's just 16) so it might be interesting for them to read.

[Lesley]

I'm glad you found the book helpful - we're passing our copies around the family as well

[henriette]

 

because her ankles are very week and she rolls in on her feet.

 

I do so hope the appointment with the consultant goes well for Lauren.

 

Even after my son's ankle operations he still rolls on his feet and now has bad knees. His specialist had some wedges made up for him to put into his shoes which made a lot of difference. The problem is, when he changed his shoes he didn't move the wedges, then he lost one and so the story goes on. Consequently he has the knee problems back again

[Lesley]

I shouldn't laugh.....but that sounds so familiar My son was just the same with his

[Lesley]

Quick update - Lauren has been injury free for a month but dislocated her thumb last night - back at A&E 'til midnight and back to see the orthopaedic consultant this morning as once again it wouldn't go back in. She has it in plaster now as she won't wear her brace tight enough. She had a visit to see the consultant in Oxford and he said that she's going to have at least 5 years of this before it perhaps starts to settle down. That will cover all her secondary school years and so my daughter approached the school again.

 

They have a big meeting planned for later in June - the consultant from Nuneaton, the physio, the OT, the SENco, the EIS and both the head of school and Lauren's head of year- and both parents. They were very interested in Lauren's idea of her being able to go to school (but not on the school bus) and to do her internet classes in the school library. That way she will still be involved in school and have some social interaction at breaktimes. Whenever Lauren has to attend hospital appts. or A&E, her education would be continuous, whether she can make it into school or not. The EIS (Education Inclusion ???) was very impressed with the internet school and, compared to what they are able to offer in the way of home schooling, it is apparently very cost effective and he is pushing for his department to look at it seriously. He has also recommended it for another young person who is unable to attend mainstream school for non physical or medical reasons - a child who didn't fit into any other criteria which they normally deal with.

 

Lauren's shoulder brace was sent back to be altered to make it more comfortable under the arms and should be available at her physio appt. tomorrow - as should the hand braces......although they won't be able to fit the right hand one now she is in plaster

 

Quite a good month all round - she has been able to cycle quite a bit and has gone back to swimming ~( oh *darn it* - that is out again now as well ) She is (was ) starting to lose the weight she had put on and doing very well, she's knowledgeable about healthy eating and exercise and is still growing upwards so no need to do more at the moment.

[Chook n Boo Mum]

An almost totally positive posting at last Lesley , shame about the thumb again though

 

Things seem to be coming together with her schooling too....thanks in no small part to you & your daughter doing the donkey work and now everybody is actually working together at last Well done you

 

Good luck with the meeting

 

Sha x

[Seagazer]

Quite a good month all in all apart from the thumb

 

Good luck with the meeting, hope it all goes well.

[Lewis]

Good news ... mostly

 

Hope the meeting goes well - sounds like a good idea to do internet schooling at school so she still has her group of friends (and can do exams there?)

[The Dogmother]

I'm glad to hear that there's more positive news at last Lesley.

[theherd123]

The EIS (Education Inclusion ???)

 

Could be a couple of things Lesley

Early Intervention Service

Education Inclusion Service

 

Im glad there is going to be a meeting of all parties - about time too!

They have dithered for far too long and left you all and esp Laruen hanging!!

 

Im glad they are impressed with the internet school - they should be paying for its service too I hope.

[Lesley]

We're hoping

 

The EIS man is Education Inclusion.....and all he's able to offer in the usual way is three and a half hours a week - it must be very expensive to provide those few hours if he's saying that 20+ hours of internet schooling is cost effective?

[henriette]

At last the light at the end of the tunnel seems to be getting brighter There are bound to be hiccups, but it would appear that now everyone is working together to help Lauren and of course, you and your daughter. It must be such a weight lifted knowing that you have a proper network going now.

[Ain't Nobody Here]

So glad things are looking more positive (apart from the thumb ) .