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Sacha

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About Sacha

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  1. Thankyou for all your best wishes. This site always gives me a warm glow. I'm lucky in the fact that Katie is upbeat and tends to take everything in her stride. But for me as a parent I just tend to hide away as I have done until everything is better. Katie is having some more tests done in May to check out her oesophagus and how the muscles are working. Also checking the nerves as well. They told me when she fell ill in Jan that they had never seen an oesophagus like this in Scleroderma ( that might just be in a child). This comment didn't fill me with much hope but Katie is testament to the fact that things can get better. Sacha.x
  2. Hi Amanda, I just put an updated post on as I haven't been on for a while but when I saw this thought I should comment. Katie was suffering from fullness and a strange taste in her mouth, especially in the morning. She was also getting pain in her chest but this was only after a couple of months of not feeling right. As she is only 8 it was hard for her to explain all her symptoms to me. But.... when she had a routine chest xray they were shocked to see that her oesophagus was very dilated. After 10 weeks with a nasel gastric tube and a soft food diet alongside an upped dose of steroid she is now recovering. They did say that her muscles in her oesophagus wern't working properly and that gravity was doing the job. Maybe you could try a soft food diet and see if that helps. I would like to say that at one point we were talking about having a feeding tube in her tummy as she was so bad but to see her now you would not believe it! She is almost eating everything besides bread. She even had half a doughnut the other day ( what things we get excited over). Hope this helps, Sacha
  3. Hi guys, It''s been a long while since I have been on here. Katie fell very ill in January of this year and ended up having a nasal gastric tube as her oesophagus was not working proprly. It had become dialated and her muscles weren't working properly. After 10 weeks, she had the feeding tube out last Monday and after an increase in her methotrexate and prolonged steroids she is finely showing great improvement! I am actually getting my daughter back! I know that we have to take it day by day but she is now eating most foods and her energy levels are fantastic! I just wanted to share my news. Sacha
  4. My daughter Katie has suffered from Raynaud's for a year now with her fingers and toes turning blue in the cold. She also has a tendency to turn a bluish/grey colour when she is feeling cold. She was complaining more and more of feeling so cold and getting pain so the reumatologist at Great Ormond Street recently put her on Glyceral Trinitrate which come in patch form which she applys daily (She only has a 1/4 of a patch a day). She is only 8 but says that she definatly feels warmer and has not been complaing of numb toes and fingers so I think they may be working. They dialate the blood vessels I think making circulation better. Hope this helps. Also have you tried a wax bath, they too are ment to help with circulation.x
  5. Wow, I've never heard of that. I will have to look it up. I did speak to her nurse today and she thinks that it is being made more prominent because of the patch she wears to dilate the blood vessels. I am going to keep an eye on it. It doesn't bother her right now but if she was a teenager I'm sure it would. Sacha.
  6. Thank you for your advice guys; I am going to chase her nurse at Great Ormond Street Hospital today and she has the district nurse coming in to give her methotrexate so will consult her opinion too. I just feel like I'm bothering them all the time. They are aware of her skin being quite thin and translucent which it never used to be until she became unwell a year ago. Her normal skin tone used to be a little tanned, not milky white. I wonder if her medications are not working as they should, she has started to look quite pale and peaky again. Thank you for listening; this forum is my lifeline or should I say sane line at the moment. Sacha.
  7. Hi Guys, My daughter Katie, who is 8, has over the last year become so veiny that she looks like a road map. But they had started to disappear when her skin colour started to come back. Well this was until tonight when they now look like they are bulging in her chest and neck. They are so blue that you can follow them from her neck, down her chest and to her thighs. Does this sound familiar to anyone? I'm also not sure if this could be due to the new patches she is wearing to help with her Raynaud's? Should I be worried? I feel a bit strange phoning the doctor to say her veins have got more veiny! If anyone else has experienced this complication I would love to hear. Sacha.
  8. I would like to say thankyou for all your replies. I have only just managed to find them on here, I am so not a computer wizz! It was nice to here so many of your stories. Katie has had a nice holiday break and is well rested. We have started to make use of her new buggy when out and about. People do give me funny looks when one minute she is sitting there exhausted looking all pasty and the next she jumps out ready to go again.Katie does ask questions all the time and I try to answer them honestly. Her main wish is not to have to take the pink medicine (prednisolone), as she does not like the taste. She is so funny and normally has the doctors in stiches especially when she recently told them about the lovely vegetable medicine (folic acid), she was so pleased when they doubled the dosage! It was very interesting to here about oesaphagus info as this is one of our main worries. We are awaiting another barium swallow to see if it has got worse. She ends up grunting when she eats and gets a very snuffly nose on drinking. I can't work out why it is getting up there! We are awaiting for someone to inspect her palate? Think I am going to chase this, this week!! Thanks Guys, you have put a smile on my face.
  9. As a mother I want to send you big hugs. My little girl is only 8 and I fear that one day she will feel alone in this rare illness. She too has to take alot of medications and only manages to go to school part time. 15 months ago she was a normal child but this illness slowly took its hold. All I can say is that as they have started to tweak her meds she has started to show an improvement. Good luck to you hun and stay strong.
  10. Sacha

    Methotrexate

    I just wanted to add that when my daughter Katie, who is 8, started on methotrexate 3 months ago the side effects were horrible. She would be so fatigued that it looked actually painful for her to breathe. She would be so exhausted and painfully white with really dark eyes. She also had terrible ulcers in her mouth and her hair was coming out in small clumps. But after having her folic acid increased these symptoms seem to have got a lot better. She seems to just be really out of sorts for about 3-6 hours now and although horrible to see her going through this, I'm hoping that they will disappear. She still hates having those injections every week and keeps our district nurse on her toes as she chases her around the house. Well, it's good exercise I suppose; I would be pleased with that physical activity if only for 10 minutes.
  11. Hello my name is Sacha and I am mother to Katie 8 who was diagnosed with systemic scleroderma in October this year. I have spoken to a few of you through email and have continued to read your messages. I would really like to find another parent who has experienced a child with scleroderma. We have recently been told that her scleroderma is not totally under control. She now takes 9 meds a day to just keep her going. She is currently on methotrexate which is going to be increased. I am also concerned that she is failing to be weaned off the steroids which they are now going to keep her on for a further 10 months. She is having problems with her espophagus which is causing her to have reflux into her mouth and nose. We are awaiting more investigations into this. I will now stop waffling like a neurotic mother. It would be great to here from any of you. Xx
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