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About claireg1961

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

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

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

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

    HI Thanks for your reply. I have made an appointment for tomorrow with her Paediatric rheumatologist - I was lucky there! It will be very painful for her (it's 25minutes drive) as she feels every bump on the road. At this moment I just feel that at least they will see her as she is - but I feel cruel doing it. The actual hospital on 25th July for her organ test is over an hours drive. Tomorrow I'm taking the hospital discharge letter so the rheumatologist can get a look. I'm hoping she can fit in the gastroscopy with the other tests. While I'm here, I must apologise to anyone reading because I never take into account that you too are suffering. Thank you all for your replies and best wishes to you all. I will let you know how tomorrow goes. Claire x
  5. I'm new and don't know what to do.

    Hi Anymore advice please.... My daughter spent the past week in the local hospital for investigations into her long standing stomach pain. MRI was clear, previous ultrasound scan and xray were also clear. Erythrocyte Sedimentation Rate (ESR) result was 30 and Orosomucoid 1.24. The doctor said the inflammation was only slight and nothing to worry about. She has been sent home with anti inflammatories - again. She has had various ani inflammatories over the past 11 months. The doctor said she will refer her for a gastric camera but that will be a few weeks away as our hospital doesn't do them on children. She also said if that shows clear, then my daughter will be referred to a psychologist as it could be due to worry. Two weeks today, she has her organ etc. checks under her Paediatric Rheumatologist - who had asked that our local hospital does the gastrics, as we are quite far from the Paediatric rheumatologist. My daughter was in a mess on returning from hospital. I know the pains are there and it is sometimes difficult for her to move around. The doctor made her feel as though she was making it up. My daughter was hardly off school prior to all this and wants to get back to school. In Sept our Paediatric Rheumatologist said "I'll send you for sclero checks as I can see it in your fingers AND you've been having stomach problems haven't you?" Can Scleroderma (Systemic Sclerosis is what the rheumatologist' put in our notes) have stomach problems? - I'm not doubting my daughter at all - I just want to be able to tell her the facts from people who know. Thank you Claire x
  6. I'm new and don't know what to do.

    Thank you all for your replies. My daughter has received appointments for the end of Jan. She will have ECG/Echocardiogram, lung tests and possibly video flouroscopy also a meeting with our Specialist. We have been told it will be a long day. The mentioned appointments are early in the day, leaving space for any other investigations to take place. The hospital is quite a travel and the Specialist has said she doesn't want us travelling back and forward. Which is good (my daughter feels every bump in the road, her stomach is that sore) and probably why appointments have taken a while. I will be getting in touch with the local scleroderma rep and take a look at the juvenile scleroderma site, offered above. Thank you all for your help/advice. I'll let you know how we go. Happy New Year to you all Claire x
  7. I'm new and don't know what to do.

    HI, thanks for your replies. I don't know who my daughter is being referred to as the paediatric rheumatologist just said she'd make an appointment with a group of scleroderma specialists. She said they only meet once every 3 months - the next time is March. I have already seen the lists you offered. The nearest local person is in Burnley which is approx 25miles away. My daughter has had her stomach xrayed and scanned. Her bloods showed slight inflamation in her bowel. Xray results 'haven't arrived yet'. Just re-read my post. Wasn't very clear about the sores!! A few appeared on her arms in April they haven't disappeared completely. A couple of months ago, a couple appeared just below her collar bone on her chest, also on her lower back as well as the one on her head. They just appear and are very unsightly - open and bright red. Eventually they fade, but sometimes flare up again. Nobody has offered anything for them apart from the chemist saying she might need antibiotics. Our doctor and the paediatric just said 'oh they're nothing'. While visiting the rheumatologist a couple of weeks ago, as she was finishing, telling us of future appointments, I said "can I just show you these on her chest? They've been there a while - they're not nothing - something has to be causing them!" I didn't get angry, my problem is I'm too quiet, but I think she could sense the urgency in my voice. I think she said something about my daughter seeing an immunologist. To be honest, I can't remember! She has been using antiseptic cream but I have just given her some anitiseptic wipes. My daughter has only managed 4 days at school since October due to her stomach pains. They are the big problem at the moment. She is getting down as she is a worker and in her final exam years. Work has been sent from school. She hasn't done much and it's lying around - which isn't her at all. She's finding it hard to sleep. I took her for a anaemia blood test yesterday, due to her feeling dizzy and looking very pale. Hopefully she will need iron and it will give her a boost. I am sorry for going on. I don't have much family - though I do have friends. I don't drive, though my husband does - though if he doesn't talk about things, then they aren't happening. If you know what I mean! Thank you for your time, Claire
  8. Hi, I am new and not sure if I should be on here! Since February my daughter has had stomach problems; Anti spasmodic tablets helped until October when doctor gave her a different type - for no reason. In that time, the scleroderma has been seen in themo imaging and capillaroscopy tests. Paediatric Rheumatologist is seeing her in 5 weeks, hopefully for lung, heart and throat checks. She is also having a problem with her throat 'closing' mid sentence. The sores first appeared in April. Doctor said she didn't need any treatment, pharmacist said she may need anibiotics. Doctor said no. They aren't small and haven't cleared up yet and she has had a few more. One really visible one is at the front of her scalp. It doesn't look nice at all. At the moment she keeps going dizzy and you can see her wobble. I am so worried for her. I don't know if anyone can offer any advice. Doctors don't seem to want to know. Rheumatologist doesn't want to give her any medication until my daughter's seen a group of Rheumatologists probably at the end of January. She is also booking her in to see a group of scleroderma specialists in March! Thank you :(