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claireg1961

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About claireg1961

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  1. 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 t
  2. 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 (Occupa
  3. 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, w
  4. 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
  5. 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 th
  6. 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 w
  7. 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
  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
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