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Don't know if I need a rant or a moan or a honk but here goes.(37 Posts)
Dd 13 has developed joint pains and weakness after taking a drug for her acne. This has been going on since October last year and no medical reason for it has been identified. Last weekend she got considerably worse and can now barely mobilise at all even on her crutches. She has always been quite stoical about it but is now fed up and complaining of being in a lot of pain.
Paed reckons it may be psychosomatic because of the 'difficult home situation' ie Ds's disabilities. He has referred her to a psychologist - the waiting list is over a year.
Yesterday I phoned the paed again and he did phone back. He wants to admit her as an inpatient to do further tests, physio, get a second opinion and bypass the waiting list by getting her to see the ward mental health worker.
Now I am glad something is being done, but I feel quite upset about the thought of my little girl who has always been the ok one being in hospital. It is so sad to see her struggling and she is mostly very brave.
I think myself that it doesn't seem psychological but if it is I am doubtful about effective treatment being available. And if it isn't I am terrified about the possiblity of her having a long term disability even though I should be used to that and accepting.
I phoned the SENCO at school today to ask for some quite minor adjustments to be made for her and got a load of patronising stuff. SENCO: Have you told the paediatrican about her deterioration?
Me: Yes I have just told you that I have and what he planned to do about it.
SENCO: Bottom shuffling (which is what she is doing to get around the house at the moment) is bad for her psychologically.
Me (thinks): Maybe but is being stuck in one place any better? AArrggh.
All this on top of all this Ds is stressing about finishing course work and exams. I have been pretty unwell myself with whatever mystery illness I have and DH is being worse than no help at all.
Can I resign?
Sorry that was long.
Rant over (for now).
Thanks all. DD is having a day off which I think she needs - she is still asleep.
SENCO sounded a bit better this morning though I had done what she wants me to.
Ds had a new support worker in last night (for his OCD reduction programme). She was shadowing the existing one and I am afraid I hardly spoke to her I was so exhausted.
Well done achieving all that! The SENCo sounds a bit . Sending your DD home seems a bit unreasonable, she must have had her H & S hat on.
So your DD can't go back to school til you get a wheelchair? So that will be Monday now, then hospital Tues? It's all happening at once. I hope you have a good weekend in the meantime.
That sounds like a good step forward. Keep going!
Message withdrawn at poster's request.
Glad there have been some positive movements today for you and DD x
good that this hospital stay is coming quick too!
Dont know what to suggest with the school SENCO other than tell her perhaps she needs to change job or have a course in empathy herself.
Blimey, what a marathon you have run.
Well done for being so on the ball and getting all those things in motion. Not easy at the best of times.
Right update now that I have time to draw breath.
SENCO had said on the phone that dd had fallen and been unable to get up. What actually happened was that the ferrule on her crutches had worn right through so it slipped and she fell. She managed to get up once someone found her a chair. TA had notified SENCO who decided to send her home which dd was pretty miffed about. SENCO also said she couldn't be in school unless she had a wheelchair.
I phoned the physio and amazingly was able to speak to her right away. She arranged for wheel chair services to supply a wheelchair (being somewhat economical with the truth so that dd fitted their criteria) and put me in touch with the Red Cross to hire one in the meantime. The Red Cross one should come tomorrow.
Physio also organised some extra hydrotherapy starting after school today. Dd finds this helpful although it doesn't make a massive difference to her mobility.
While this was going on the paed's secretary phoned. Dd is to be admitted to the children's ward for 2-3 days on Tuesday next week.
So things are moving forward. I am most worried about school though. The SENCO wasn't particularly sympathetic but Dh answered the phone and I don't know what he said or how he said it but when I took over he was angrily saying that the GP was useless (not true). I think I might have to reestablish us as a reasonable family.
Thanks for all the messages of support. I have felt less alone today because of them. .
IE she doesn't appear particularly bendy. Ds is and has fairly mild hypemobility - it mainly affects his writing. The paed did say in his initial letter that he could see no of hypermobility.
Have you explored Hypermobility Syndrome? It can go unrecognised but it can alaso cause significant pain and fatigue.
DS went to GOSH for inpatient treatment and there were children in wheelchairs/on crutches.
It can be made worse for women by hormones (menstruation/pregnancy etc) - I wonder whether that is worth exploring?
Is she bendy??
Hope your dd is ok and the GP had a plan to make sure she is properly investigated and supported asap.
If they can't/won't help I would go with what zzzzz said and take her to A&E, sometimes that the only way to make them listen.
Hope your DD is ok and you've managed to see someone useful. X
Hope you have heard from the GP by now NoHaudin I really hope he has a plan for you.
This really does need a thorough investigation and I cant see how family therapy is going to take her pain and issues away
My gut feeling is A and E is appropriate, but GP will have a plan. Lets hope they stop faffing about and get the poor child some help. I'm deeply unimpressed with their lack on progress on dx.
Just had a phone call from school. Dd has fallen over and been unable to get up so they are sending her home. Dh has a day off today so has gone to get her. I am waiting for a call from the GP as I really don't know where to go from here.
Yes it is. Causes all sorts of added complications. I have agreed to meet the family therapist on my own and dh will do similarly.
I will then see what I think. I met her once in a meeting and was put off because she has what Ds calls a therapist's voice - all soft and breathy.
Some 'D' Hs are less 'D' than others!
Oh thanks Lougle. Yes I'm glad it is being taken seriously.
Polter fingers crossed for the rest of the week then.
Dd came home from school exhausted. Literally collapsed on the floor in the hallway. She has now revived is laughing at Harry Potter (which she is reading for about the fourth time) and is determined to go to her drama class tonight because she wants to audition for a part in 'Annie'.
I had a pretty awful review meeting for Ds. They insisted that Dh came and pushed family therapy again. I try to make sure DH doesn't come to meetings for a reason.
I don't think you're moaning
I think admission would be a good route - they will be able to observe her, and the nurses will see her determination and grit - they'll tell the doctor that they can see she's really trying and that she's physically unable to do it - nurses see a lot
Keep going - you rock.
Being in constant pain isn't good for her psychologically, either, or did the SENCO not get to that chapter?
Thanks AA, Polter and Moose.
I'll ask about that Justabout. She does have significant weakness in her legs as well though.
Polter how is your Ds doing this week?
Message withdrawn at poster's request.
NoHaudin, nothing to add really as brain is on a go slow and everyone has already said what I could think of, but sending a gentle hug and hoping the hospital stay manages to get to the bottom of what's going on and come up with a plan to help your dd.
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