Neighbour making formal noise complaint.

[Lesley]

 

We popped in to see them all last night - Lauren is not too impressed with her Dad .......she was given the choice of a splint or plaster and he said 'plaster' because she loosens the splints all the time! We've watched the physio talk to her about how important the splints are and show her how tight they need to be - before we get back to the car, Lauren will have loosened them It's the painful skin thing - she never has liked anything tight or rough (or hot/warm water) against her skin.

 

She now has her thumb held out like she's thumbing a lift in the hope that the ligaments will tighten enough to hold the joint in.

[Lesley]

I was just reading last night that the young actress who plays Izzy in Coronation Street has EDSh - both in real life and in the programme!

 

She's the young girl in the wheelchair.

[SarahJo]

sending best wishes to Lauren - must be really frustrating not to be able to do her sports, especially when in plaster again

 

Hope the meeting gets a good outcome and gets some sort of "normality" for Lauren

[Lesley]

The BIG meeting was today - the Deputy Head, Senco, Physio, OT, Paeds. Consultant from Nuneaton, EIS and parents.

 

The school admitted from the start that they have failed Lauren and should have done more. The Consultant told the school that even if Lauren is in plaster then they shouldn't be excluding her from school. She explained that EDS injuries are inconsistent and that these problems are going to be ongoing. The Education people admitted that all they could offer in home tutoring was 2 hours a week The school weren't happy with Lauren doing Internet School at school but DD and Son in Law are not prepared to stop the Internet Schooling until the school can prove that they are able to provide a safe environment (last time Lauren fell down the concrete stairs, she was on her own ) and can provide adequate work for her as soon as she's unable to attend school.

 

At the moment they are going to try a compromise........next week Lauren will have Internet School in the mornings and then go to school at lunchtime for lunch and the last lesson of the day. These lessons will be relocated to the ground floor. Internet School breaks up 2 weeks before end of term so she will attend school and see how it goes. She will be taken in at lunchtime by onee of us and will have an early pass and a docket to show the bus driver later so she will be able to miss the rush for the bus home and have a guaranteed seat. Lauren wants to drop French as she's also doing Spanish that will leave Thursday free and she can try school all day.

 

We'll all just have to wait and see how it all goes.

 

Tomorrow her Physio is leaving and they have to have a hand over to a new Physio - then they received an appt. for Lauren to have her plaster removed and see the Consultant......within 10 minutes of each other. Fracture Clinic were unhelpful and would only make an appt. for plaster removal in two weeks time and Physio appt, requires two Physios and they were unable to re-schedule I think my daughter kept on phoning until she got someone helpful on the end of the phone who moved the plaster appt. back half an hour.

 

Monday she has fittings for the orthotics and last week she had her braces fitted - she has typical EDS teeth, small and with big gaps.

 

I think I've remembered it all

[Snowy]

Oh my goodness! The saga never ends does it? Sounds like it is a constant battle to get anything for her, which is a ridiculous situation to be in. But on the plus side, at least things are moving forwards.

[Egluntyne]

Crikey. You wonder why the first person couldn't oblige and re-arrange the appointment when a subsequent one was prepared to do it. A jobsworth I expect.

 

Sounds promising re the new arrangements.

 

Fingers crossed.

[Sheilaz]

Well done to family for getting this all moving forward. It's appalling that they have to push for everything to make sure that L. isn't ignored both medically & educationally.

That meeting is a good milestone though, I do hope everything improves.

There are so many aspects to deal with, but at least there is the overall diagnosis to ensure that she is seen as a whole person too. About time!

Thanks for the update Lesley, and love to you all.

[The Dogmother]

Fingers crossed here that it works out at school and that they buck up their ideas.

[theherd123]

At last!!

Its been a long time coming but it does seem you are getting somewhere! HURRAY!!!

 

The Education people admitted that all they could offer in home tutoring was 2 hours a week

Just want to qualify the above statement for you Lesley if your DD needs to fall back on home tuition. If Lauren was to be exclusively home tutored she would legally be entitled to a minimum of 5 hours a week.

[SarahJo]

OMG - mixture of results, but at least someone has put their hands up to failing Lauren, just wish there was more "give" on her education. Hope it all runs smoothly for her when in school - and as for the plaster and physio appts -

 

Lauren is a gorgeous young lady - and I am sure she will succeed no matter what the circumstances, as she has the most important people supporting her- her FAMILY

 

Best wishes to you all - and keep us posted

[Helly Welly]

It's really heartening to hear that things are moving for Lauren, even if the school are still being a bit awkward.

 

I'm a bit funny about things on my skin too, it's common for those with EDS/HMS. I went to parents evening last week and was a bit shocked that the PE teacher had no idea that Abi had HMS and had never heard of it. We'd made sure to give the school plenty of information at the start of the year and you'd think the PE teacher would be the most important person to pass the information on to.

 

Maybe you should threaten Lauren with duct taping her slpints to her if she keeps loosening them

[Lesley]

I'll certainly threaten her with something

Lauren had just the same with PE, despite being told he decided that my daughter was lying and Lauren was lazy and insisted she ran round the school field Are Abi's school taking it seriously?, Lauren's primary didn't, they thought we were making it all up.

 

The Education people admitted that all they could offer in home tutoring was 2 hours a week

Just want to qualify the above statement for you Lesley if your DD needs to fall back on home tuition. If Lauren was to be exclusively home tutored she would legally be entitled to a minimum of 5 hours a week.

 

My daughter queried this and he said Lauren would qualify for three and a half hours but he would only be able to provide two - he has only two teachers for the whole of South Warwickshire Let's hope they don't have to go down that route.

[Chook n Boo Mum]

I went to parents evening last week and was a bit shocked that the PE teacher had no idea that Abi had HMS and had never heard of it. We'd made sure to give the school plenty of information at the start of the year and you'd think the PE teacher would be the most important person to pass the information on to.

 

I made DS's primary school amend their policy of passing on pertinent information to "external" staff who came in to teach extra-curriculum activities after DS was blindfolded & expected to take instructions from two other kids as part of an outward bounds club.......when he is totally deaf in his left ear......he missed some instructions & ran into a cricket bench, ending up badly bruised & cut up and breaking one of his adult front teeth He's now having treatment on said tooth which would have been totally unnecessary & will eventually have to have a brace fitted, also unnecessary. The poor instructor was mortified when I told him, he had no idea.....and the head master was very apologetic

 

When will school realise that certain information MUST be passed on to other people for the safety of our children, despite what the PC brigade might think ..sorry Lesley , I've ranted on Lauren's thread

 

Thank goodness people have started to see that gross errors have been made, and perhaps things will now improve

 

Sha x

[Lesley]

That's fine Sha - you rant away......I'm trying hard not to or I'd never get off this thread!

 

It is poor when important information isn't passed on - your poor son! I hope the dental work is soon out of the way.

[Happy chickens!]

It must be so frustrating to make a step forward, then feel like you move back again with another injury/problem with support. Hopefully you are making better progress now.

 

I can't understand how the pe teacher didn't get that info Sha - schools are supposed to be so much better at that sort of thing now. Grr.

[Chook n Boo Mum]

Another 2 appointments over the next 2 months then braces....the tooth has died so the dentist has drilled into it, removed any roots, packed it with antibiotics, then needs to bleach it I wonder what the school's reaction would be if I reduced DD's school fees by the cost of the treatment as it was caused by their negligence in the first place

 

Sha x

[Chook n Boo Mum]

I can't understand how the pe teacher didn't get that info Sha - schools are supposed to be so much better at that sort of thing now. Grr.

 

It was the school's policy to furnish all "internal" staff with the info about all children at the school, so if they had to cover another class they all had the same medical/physical/special needs etc info......the same did not apply to "contract" staff.....I understand not giving them everyone's info, but the kids in their clubs/classes, surely they should know....a point which I put to the HM & he changed the policy.......I assume the new HM hasn't changed it back....maybe a quiet trip to the office is in order, just to be sure..........

 

Unfortunately it happened when he was in year 3 I think & he's now in year 8, and the HM and the nurse of the school have changed so I suspect they will have sloping shoulders anyway

 

Sha x

[Lesley]

Lauren was out of plaster just over a week but turned over in bed last night and dislocated her thumb again (if she would wear the splints it may not have happened of course but that's another matter we're trying to deal with )

 

Her Dad took her to Warwick A&E where they X-Rayed and then sent her to have it plastered. Because it was nearly midnight the plastering had to be done by a nurse and she wasn't allowed to use the lightweight stuff so Lauren has a heavy plaster of paris cast on - and then that may dislocate her shoulder

 

The nurse asked SiL how Lauren got on when she saw the orthopaedic consultant at the Nuffield in Oxford - he'd confirmed that they wouldn't operate on Lauren's shoulders. The nurse responded that they need to ask a consultant what should be happening and that Lauren shouldn't really be having as many X-Rays as she is. It should be on her notes that she musn't have more X-Rays

 

My DD has now spent a sleepless night worrying about the X-Rays - there is never a choice and she has tried saying before that she's worried about the number of X-Rays but they won't look at the dislocations unless Lauren's had an X-Ray................ we don't know what to do...........can anyone help re X-Rays?

[Tiggy]

we do try to limit the amount of radiation a person has but sometimes there is no choice, Id have a word with the Doc next time

[Charlottechicken]

I found **this** Lesley, it might be of some use.

[Lydia]

I've no idea how many x-rays you should or shouldn't have but I had them pretty much monthly throughout my childhood (almost daily if I was an in-patient which was often). Most of this was carried in Great Ormond Street Hospital so specialists in paediatric care.

 

This was in the 70s and 80s though so times may have changed.

 

I continue to have x-rays a couple of times a year to this day and, at 36, I'm still here. Sometimes it's unavoidable but the people at the Nuffield should be able to advise.

[docsquid]

I think if there is a good indication for an x-ray it shouldn't be withheld - as the link provided says, the risk is extremely small, even if x-rays are very frequent. X-rays don't just confirm a fracture or dislocation, but they are used as the starting point for treatment by manipulation, and of course to check alignment when fractures are healing to avoid long-term pain and deformity.

 

There are times when x-rays are not needed - fractured ribs heal just fine without any intervention, so you don't need to x-ray them. However there are bones with critical function, the thumb being one of them, and any weight-bearing bone or joint. It is better to take the tiny risk from an x-ray than to risk permanent lack of function in a critical area.

 

OTOH maybe they can think a bit more about more routine x-rays, when there is relatively little to be gained over and above examination alone.

 

I would talk it over with the consultant, to see whether there is a middle path that allow for important x-rays and omits the less important ones.

[Lesley]

Thank you all for the replies - I think it will put my daughter's mind at rest a bit. I've passed all the comments on to her and she will be contacting the consultant at Nuneaton who has overall care of Lauren to see what she says.

 

It is difficult to know what stance to take because the dislocated joints are starting to not go back in with manipulation and she often has to have 3 X-Rays for one injury.......they manipulate and tell Lauren that it is back in and she tells them that it isn't - they won't do anything unless she has another X-Ray......and so it continues.

 

On a good note - Lauren spent 5 afternoons at school last week - she's really enjoyed meeting up with classmates at lunchtime and taking the last lesson of the day with them, she has also had a seat on the bus back home every day. She hasn't gone today as she was so tired and the plaster is unwieldy. The plan was to attend school for the last two weks of term as the internet school finishes this week. She'll be back in fracture clinic on Thursday to see what they want to do about her thumb, hopefully she will have a lightweight plaster on.

[SarahJo]

Do not have any advice re. x rays - I do know that any on the "head" area are avoided unless absolutely necessary.

 

Reads as though doc.squid and co have given some exc advice, Lesley. Hope all improves for Lauren - she doesn't half go through it -

[Lesley]

...so does my poor daughter ......my grandson had a fall and landed badly on the kerb outside their house. My SiL is away with work so she decided to take him to the small cottage hospital. She's a very nervous driver and finds it difficult so it was an effort for her to go there. They don't have X-Ray facilities so she's had to take him to Warwick after all I'm hoping she'll be back in daylight or she'll be a complete wreck.

 

Jake hasn't been very sympathetic towards Lauren when she's in plaster.......Lauren's hoping he's broken his arm