Here some suggested organisations that offer expert advice on SN.

Don't know if I need a rant or a moan or a honk but here goes.

(37 Posts)
NoHaudinMaWheest Tue 23-Apr-13 20:20:04

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).

Oh no! You could do without this! I didn't realise your DD was having so much trouble. These unDXed things are so frustrating.

Oh you poor thing. How long will she be in hospital for? Does she want to go?

NoHaudinMaWheest Tue 23-Apr-13 21:57:07

Five days max in hospital he said so no big deal in itself. She doesn't particularly want to go - who would - mainly because she doesn't want to miss school but is resigned because she does want a solution to her difficulties. She is just sooo sensible!

zzzzz Tue 23-Apr-13 22:12:55

Honk honk honk

How awful for all of you.

Funnel all frustration into hating the senco because she sounds like a tit. Next time she spouts about what is "psychologically bad for her" perhaps thank her for her insight and explain that you are consulting trained medical advisors so possibley her amateur efforts are unhelpful at best. Honestly you are so patient! angry

I think admitting her is a good plan. Hopefully they can get to the bottom of it and she can start getting better.

How tired you must be. HONK HONK HONK

NoHaudinMaWheest Tue 23-Apr-13 22:25:53

Thanks zzzzz. Yes this SENCO is hot on her amateur psychology. I discovered that after Ds had been in the school a while and after that I avoid her and just used the head of the unit Ds was attached to. I even spoke to her about Dd although she wasn't strictly in her remit. However that lovely head was relocated at Easter so I have no choice now.

zzzzz Tue 23-Apr-13 22:36:33

"What can't be cured, must be endured"

Sounds like the senco is going to be challenging on that front. Perhaps the paediatrician would write a letter about appropriate/inappropriate support? Mine is very understanding about that sort of nonsense, and has a fine turn of phrase. grin. I think they enjoy squashing "educators".

Dinkysmummy Tue 23-Apr-13 22:55:59

I feel for you...

Your poor dd, she does sound very sensible.
Wow, it can't help when the senco thinks she has a medical qualification over an educational one!

I really hope you feel better soon x

coff33pot Tue 23-Apr-13 23:20:19

I think you possibly need a bit of all three! good grief what a time you are all having sad

The senco sounds.........full of wisdom hmm

I am not surprised you are feeling unwell with all this worry and stress atm.

Fingers crossed the hospital week goes smoothly and they are very thorough in their tests which bring forth results for your DD bless her x

NoHaudinMaWheest Wed 24-Apr-13 00:32:10

Thanks Dinkys and coff.
We'll see what tomorrow brings.

AnotherAlias Wed 24-Apr-13 07:17:22

honk

PolterGoose Wed 24-Apr-13 07:26:37

Poor dd sad

Maybe hospital stay will find something or at least give them a chance to try out more treatments and therapies confused

A tough time for you all flowers

Honk and flap

moosemama Wed 24-Apr-13 10:05:35

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.

justaboutalittlefrazzled Wed 24-Apr-13 10:10:06

Your paed sounds very committed, which is great.

Do you know much about pain disorders? There is the possibility I guess that she has developed one of those. It doesn't necessarily mean it is psychosymptomatic but it does mean there is no clear physical cause for the pain. Might be worth asking about?

NoHaudinMaWheest Wed 24-Apr-13 15:32:52

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?

ouryve Wed 24-Apr-13 16:01:25

Being in constant pain isn't good for her psychologically, either, or did the SENCO not get to that chapter?

PolterGoose Wed 24-Apr-13 16:04:05

Thank you for asking flowers Ok start of week, got kicked in rough play today and retaliated, would love to know what his 1-1 was doing as she is supposed to prevent him playing anything verging on rough because he doesnt know when to stop and is so very hyper-sensitive he cant deal with it at all... but he seems okay so far since we got home, told me he made a new friend shock

How are you, ds and dd today?

lougle Wed 24-Apr-13 16:20:03

I don't think you're moaning shock

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 wink

Keep going - you rock.

NoHaudinMaWheest Wed 24-Apr-13 16:27:21

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.

Some 'D' Hs are less 'D' than others!

lougle Wed 24-Apr-13 20:10:33

Oh dear, NoHaudinMaWheest, that sounds tricky!

NoHaudinMaWheest Wed 24-Apr-13 21:32:07

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.

NoHaudinMaWheest Thu 25-Apr-13 10:54:23

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.

zzzzz Thu 25-Apr-13 11:21:19

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.

PolterGoose Thu 25-Apr-13 11:32:50

What zzzzz said

flowers

coff33pot Thu 25-Apr-13 11:33:48

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 confused

Hope your DD is ok and you've managed to see someone useful. X

moosemama Thu 25-Apr-13 16:55:59

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.

inappropriatelyemployed Thu 25-Apr-13 18:11:42

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??

NoHaudinMaWheest Thu 25-Apr-13 21:31:09

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. flowers.

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.

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.

PolterGoose Thu 25-Apr-13 21:54:31

Glad to hear things are happening, and so hope the hospital stay is fruitful for dd flowers

coff33pot Fri 26-Apr-13 00:02:04

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.

justaboutalittlefrazzled Fri 26-Apr-13 05:04:17

Yes, good luck with the admission now.

lougle Fri 26-Apr-13 06:48:20

That sounds like a good step forward. Keep going!

Well done achieving all that! The SENCo sounds a bit hmm . 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. smile

NoHaudinMaWheest Fri 26-Apr-13 11:26:37

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. blush

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