What are your opinions on this cold weather and letting your kids out to play at break and lunch times. I told school this morning that if it kept being this cold and if the wind picks up she's not to go out. I got a very icy reception to that I must say. We've not had any snow down here but it's been cold which doesn't seem to be doing her any good especially as her knees have been hurting lately.
Just so happened that as I picked the kids up from school her consultant rang me. I have booked a physio appointment on Thursday for her due to knees and mentioned this to her. She fired a few questions at me then said depending on how physio feels she will see her next week or if she feels she's ok then wait till Jan 10th when Bristol consultant comes down.
I then mentioned the cold and how I've asked the school not to let her out but if she wants to let her but no more than 10 mins she agreed with me but also said that's a tough call as to what to do obviously want her to have fun and join in but equally not let her get to cold and stiff up her joints.
We haven't been using the wheelchair for a bit but i'm starting to use it again more now

she can't do very long distances still which concerns me as I would have thought she could have gotten to school and back. There are some days that she will walk all the way home but she suffers big time for it. With this cold spell I've been driving them to school especially as been busy going meetings and then trying to sort out christmas etc.
The MTX and Enbrel seem to be doing a great job but as the consultant pointed out it's been exactly 4 months since the steroid joint injections and the pain in her knees could possibly be that wearing off

I hope not as I had hoped and thought that those two meds were helping her.
Michelle
Comments
My daughter has alot of problems at school with playtime. Some days she wants to play and others it is just too cold. Alot of the time the teachers make her go out because of health and safety !!! I have to tell her teacher at the beginning of the day whether she is allowed out or not but even that doesn't guarantee her staying in.
My daughter's knees get very bad in this cold weather and I told the school that she's to keep warm etc but I really don't think they listen half the time.
So it sounds as though it's across the board really with school and playtime unless you're one of the lucky ones.
x
They then said oh none of our children went out today but she tells me differently. I'll be speaking with physio tomorrow and seeing what she has to say about it all. I felt like asking the teachers if you were in an OAP's home would you force them all out to get "air" on a day like today especially those with arthritis i bet they wouldn't a child is no different, ok the drugs often make her look like nothing is wrong but they don't see the agony I do at the end of the day because she's done to much arghhh.
Michelle xxx
Regarding the pain in her knees, despite my not being a doc I think the consultant is on the right track: steroids last for up to three months then they start to fail so I think that is the likely culprit. Oh for a magic wand, one wave and it all goes. I wish her well. DD
School said she was making snow angels today and was able to get up off the floor from doing it (we only had a dusting rofl) but her gloves are soaking wet but she won't tell me how her hands felt afterwards and school said she never came and complained but that's the problem she won't tell you she will sit, go quiet or play out of site so as not to be noticed and as it's an open policy they do 25% structured learning and 75% play they aren't going to notice either. Next term it's 50/50 then in terms 5&6 it goes 75% learning 25% play.
It will be down to staffing - there will be a rota for staff to cover the playground and other class staff will be on breaks/preparing for the next session etc
I think it is worth raising the issue with the Senco/head teacher etc as they can look at it from a whole school perspective. Perhaps she and a friend could curl up on a bean bag with some books in the secretaries room/head's office or a communal area such as the library.
Speedy
Michelle
I can understand your frustration when your wishes have been seemingly overlooked.
As someone has already suggested, it might be an idea to ask to have a chat with the head and/or senco, as they should be made aware of the issue, and also of what the consequences for your daughter if she does stay out too long or get too cold and stiff. If your daughter has an individual education plan (she may not need one I don't know) then you can ask for her specific breaktime needs to be added onto it.
As a teacher (not currently working) with arthritis I can certainly empathise with the problem for her - cold damp days on playground duty were torture for me.
I had a child in my class who had similar problems, and even though we had only a very small staff, we always managed to make arrangements so that she could stay in when necessary. It just takes some advance planning and a little lateral thinking
best of luck
WONky
I am so sorry your having this problem and agree with the others talk to the head and maybe you could get a back up letter from the gp? It would be quicker than asking a rumo to do one I think.
I have circulatory issues from birth and the cold at playtime was so hard to recover from but I never said a word to anyone.
My parents knew I guess and it was more complicated that my mother was the head teacher but your little one has you in her corner and I am sure you can make them understand .... even if you point out if being sen out in the cold could make her unwell and if it does you will sue... I don't often advocate that line ( it might make them think a bit further than they are though) but bless her I can;t take the wind that's been hitting me and even if you have a decent coat you still have hands, legs and feet.
I so hope you can get it resolved and wish I knew what to say to help. Cris x
My son wanted to do a cake sale at school to raise some money for a charity that would benefit children like his little sister - so we emailed Arthritis Care for some information for Jamie to take into school. They sent a brilliant publication called Information for Teachers - which really helped (me even) get a picture of what Bet must be going through.
Bet had a really rough summer term and while her teacher was very empathetic (husband with RA) I wasn't sure how much the Head was understanding what all the time off/ indoor play/me coming in regularly to administer steroids was all about. So I gave him the book and specifically asked him to read it. That same week he said he'd read it and was passing it to the SENCO (more on what she's done (lovely lady) will put in another thread).
Anyway, ask Arthritis Care for a copy of the book, it gives a really good picture of what the sufferer is going through - how they will really make the effort to join in with things that they enjoy, so "appear" to be pain free - because they do so want to be included.
Maybe this would help the teacher be more empathetic to Kayleigh especially in this dreadfully cold weather. She doesn't have to read the whole book immediately, just pick out the relevant stuff with a post it note.
Hth
Kath x
K