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I'm new and don't know what to do.

15yr old daughter sleep problems open sores no energy dizzy wobbly 4 days at school in 2 months stomach pains

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#21 Amanda Thorpe

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Posted 11 January 2012 - 12:54 PM

Hello Claire

So is your daughter seeing one of the recognised scleroderma experts as show in the list here? In my opinion as a patient and this is purely my opinion...when some doctors don't know what's wrong, rather than admit it, they play the physcological/depression card and to do that to a child that clearly has scleroderma because they don't know enough about sceroderma ain't right...in my opinion.

You've been given the link by Jo to gastrointestinal involvement, the fact that there are pages and pages and pages abut it is a bit of a giveaway when it comes to how frequent a symptom it is.

Take care.
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#22 claireg1961

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Posted 29 January 2012 - 11:26 PM

Hi

My daughter had a long day at hospital last week. Systemic sclero' was diagnosed. Heart and lung tests were clear, thank goodness. She has to return for fleuroscopy and endoscopy (gastroscopy) not sure which - but that was 'booked' in December by our local hospital, and we're still waiting!
My daughter has to go to hospital for 3 days of steroid drips followed by further days, but I don't know when yet. She has been put on Methotrexate. I have the number of the rheumatologist nurse at the hospital if we need any advice etc.
Physiotherpy and occupational therapy are planned.
Yes, we finally got there - as well as our doctor she was seen by 'Professor' something or other (sclero' specialist) as her doctor wanted someone else to confirm her diagnosis.
She still hasn't managed school yet and has become very down - she has always been a worker and feels she has no power over what's happening. She is in her final 2 years at school and it's a great worry for her. I am taking her to the general practitioner today for a talk and I have asked the school nurse to visit as she can talk to my daughter about how school will help.
It's taken me a few days to get myself to write about it, but now we can move on. I look at her and can see she's being 'engulfed' by this - I'm hoping todays visit and the school nurse are another step forward.

Claire x

#23 Joelf

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Posted 30 January 2012 - 07:08 AM

Hi Claire,

Well, at least your daughter has a diagnosis, even if perhaps it's not what she really wanted to hear. I do hope the medication they've prescribed will help her; I'm not taking Methotrexate but some of our other members are and I think have had good results from it. I do take a small amount of steroids which should be prescribed with caution for Scleroderma patients but they certainly improved the symptoms with which I was suffering.

I'm very sorry that she's feeling so down and probably a bit overwhelmed; I think the worse thing I felt was a lack of control. In my case diagnosis and treatment happened so quickly my feet barely touched the ground and I was a bit worried at that point. Once I was able to get a little more control over the things that were happening to me I was a lot happier (I am a bit of a control freak, I think! ;) ) I've included a link for you and your daughter on Emotional Adjustment which I do hope will help you both and it's good thing that your daughter can talk to her general practitioner and school nurse which perhaps will also help her to come to terms with her illness.

In the meantime here is an extremely large :emoticons-group-hug: for you both (I'm the red one! :emoticons-i-care: )

Best wishes,

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#24 Amanda Thorpe

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Posted 06 February 2012 - 08:25 AM

Hello Claire

Loss of control is part of what scleroderma does, actually I would think any chronic illness would do the same thing. It's a shock to find the one thing we take for granted, our body, can't be relied upon anymore and we can't do anything about it, in addition there's the ever present possibility that this body could do anything! It's a lot to come to terms with for anyone let alone a 15 year old.

I have started bereavement counselling, I will have had scleroderms for 5 years in August, to try and adjust to the loss of the life I had so I can build another one. Easy it ain't but I intend to see it through, not just for me but my wonderful husband.

At some point in the future some sort of counselling may help your daughter and of course you.

Take care.
Amanda Thorpe
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#25 sharumeg

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Posted 06 February 2012 - 10:38 AM

Hi Claire
Glad to hear that you are now making progress. My daughter is now on methotrixate once a week (which myself and husband are going through training so that we can administer the drug itself, handy for holidays). She is undergoing steroids once a month, hydrotherapy once a fortnight and wax therapy once a fortnight which she finds helps her hands). She has lots of physio to do, 6 different excercises a day and thankfully she has been doing them no problems at all. We have had an OT out to the house and things are falling in place there and also out to the school. At the end of the month there will be a meeting with the school, general practitioner, community nurse, our Paedatric Rhuematology nurse, physio and ot so they will all work together and help out. Shannon also wears nightime splints to stop her hands curling up even more. Our nurse has also helped us to fill in forms and I have found out all about different groups (unfortunately not one of them assosciated with Scleroderma) in the area which can help with form filling, grants, aids etc.
Shannon has down periods but very rarely, I am lucky that she is managing to cope with school and see her friends which are giving her a boost. School are also looking into how her disability will affect her exams so I think the ball is rolling in all the right directions, she is still having problems with veins but we are trying different ways to overcome this and they have decided to do blood tests once a fortnight now as the trauma was getting to her.
It's a learning curve for us as well as her and our lives have turned upside down as well but we will get there.
Take care and I hope your daughter gets on okay.
Linda

#26 Amanda Thorpe

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Posted 06 February 2012 - 11:01 AM

Hello Linda

It's great to hear that your daughter is getting so much help and support, that her friends are still there for her. It may sound cliched but it's one day at a time with scleroderma otherwise it can be overwhelming. Enjoy a good day and get through a bad one knowing a good one is just around the corner.

Take care.
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#27 claireg1961

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Posted 16 March 2012 - 06:34 AM

Thanks everybody for your help/comments. My daughter now takes methotrexate once a week - 8 tiny tablets. She is also on steroid drip once a week at our local hospital but that goes to monthly after the next 2 drips. We have a meeting with her specialist next week, together with scleroderma specialists. We are fortunate that we attend a hospital with a specialist and when she's 18 she will be transferred to a hospital which specialises in the disease. A couple of the specialists are on the list on this forum. Both hospitals are about 90mins drive, but at least we get to see them.
OT (Occupational therapy) has ordered a wrist/hand splint to help with her school work. She returned to school this week but only part time and if she was up to it. She managed 5 half days but this morning had no energy at all. Her stomach pains haven't gone altogether but there is a significant difference in that she stands up straight now whereas she was bending over, holding her stomach before the treatment started. She still shuffles along unable to walk at normal speed. Physio have given her some balance exercises to do and we return there next week.
A lot of school work has been missed, but she is adament she will catch up.
I received some book marks from the Scleroderma Society with details of the condition. I always have these in my bag when we visit our local hospital and the university trainees now know about all about scleroderma!

I'd like to thank you all for your help.

Claire x

#28 Joelf

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Posted 16 March 2012 - 08:07 AM

Hi Claire,

I'm very pleased to hear that things are settling down now for your daughter and that she's coming to terms with the disease a bit more now.

It's excellent that you are able to be dealt with by a hospital that has Scleroderma specialists so at least you'll be able to feel confidence in her treatment.

Kind regards,

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#29 Amanda Thorpe

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Posted 16 March 2012 - 02:55 PM

Hello Claire

I am glad you now have specialists on board and that your daughter has been able to go back to school. Just make sure she takes baby steps because if you over do it BAM! It's difficult to find a balance between making the most of a good day and not overdoing but overdoing it will only ensure a lot of bad days.

It is important to give your body time to recover from activity when you have scleroderma and for us that recovery can be days or weeks.

Take care.
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#30 claireg1961

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Posted 17 March 2012 - 01:12 AM

Hi Amanda, I think we have tried too much to get her back to school though she really wants to return. Only 3 part time days, travelling on a school bus, then a day for her drip after which she was shattered. A big problem was that my daughter had been referred to a 'medical school' - 2 rooms attached to a primary school. A taxi was provided. We were told this was happening by our local hospital consultant without involving us in any meeting. The only time my daughter has been off school was with symptoms to her then unknown condition. She is naturally very bright and doesn't need pushing to do her work. In fact I let her get on with it and she does - but they sent her to this school and in 4 part time days they'd been for a visit to a museum and sat in class doing hardly any work. She would have done more work at home! She didn't deserve to be there and felt as though she was being punished so we visited her usual school and felt we had to get her back there or she would have to go to the medical school, which was a waste of time.
I realise this isn't a problem for your discussion site and I am looking at the local council at the moment. It would be no problem to me if they sent a tutor to our house. School mentioned her resitting the year, this devastated her.
I have realised she has done too much in the 3 part time days, though she felt she could cope. I now realise how big a condition this is and will talk with her today. We see the specialists on Wednesday where we can discuss more than we did last time we saw them. We haven't seen them since she was diagnosed.
Thank you so much

Claire

#31 judyt

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Posted 17 March 2012 - 03:17 AM

Hello Claire

I have got rather behind in reading your posts. I have been having quite a time of it with my own gastro issues since the beginning of of February and have been in hospital more than I have been home. I can sympathise with your daughter's fatigue being at the same stage myself just lately. It is so disheartening being so tired all the time.

The reason I am posting, actually, is not to go on about myself but to offer you a bit of support with the schooling issue. When our daughter was 15 and 16 she was quite unwell with Asthma and other chest illnesses and the accompanying stress. She too is a very bright person and at that time we made the decision to remove her from her usual school and enroll her with a Correspondence School. She was doing the first year of external exams, the work all came through the mail and a tutor came from time to time to see that everything was going OK. I was the supervisor.

As it turned out for her she passed the exams for that year and was able to return to day school the next year. It was quite a tie for me, but I didn't have to go out to work so I would have to say that it was the best thing to have done. In the end she didn't stay at school much longer, she wouldn't have been able to cope with University so she did some business papers and was fortunate to get the first Office Junior job she applied for and from then on in she was fine.

My daughter's health issues are nothing like Sclero. (don't I know it) but I think that taking a bright motivated teen away from the stress of day school - or "medical" school is not such a bad thing to do. I know what I would do in your position. Schooling here in NZ is quite easy to organise from home and I presume the same freedom is available in the UK.

I am hoping that you can work something out without too much stress.

Warm hugs and best wishes

JudyT

#32 Amanda Thorpe

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Posted 17 March 2012 - 08:07 AM

Hello Claire

Yep, this disease is huge and for a time consumes our whole lives, not because we are weak or we want it to, but because it is so physically devastating. It can get better and for some it really, really does but whilst it's active we must, must, must treat ourselves with the utmost care. If I find this difficult as a disabled adult I can't imagine how difficult it must be for a young person who still wants to get up an go!

Home schooling may well be something to consider in the interim but your daughter could still have her friends round to visit etc so she's not totally cut off from her peers.

As hard as it is we can't pretend we can live the life we had prior to scleroderma and the sooner we accept this the sooner we can adjust to what we're actually living with now. Do remember though that it can get better so what your daughter is living with now she may not be next year or the year after that.

Take care.

PS Claire, have a look at our video about Fatigue in Scleroderma, maybe your daughter could watch it also?
Amanda Thorpe
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