Mother of Katie, 8
Posted 23 December 2010 - 11:17 AM
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
Posted 23 December 2010 - 01:03 PM
I'm really sorry to hear that you and your daughter are going through so much right now I am 21, and have had Localized Scleroderma since I was around 12 or 13. Although I have the localized kind, I had severe gastrointestinal problems for years after the Sclero started. I ended up having a Nissen Fundoplication to stop the acid from eroding my esophagus. Anyways, I'm not a mother, but I do know what it's like to BE a child with Scleroderma and might be able to help! I hope to talk to you soon
Posted 23 December 2010 - 03:24 PM
I am the Mom of a son who was diagnosed with sine Scleroderma/UCTD at age 18. He started with the positive blood work, esophageal dismotility, 20# wt loss, restrictive lung issues, loss of vocal cords, autoimmune induced depression, and numerous other problems. I had never heard of Scleroderma till Gareth was diagnosed. He had no skin issues or Raynaud's at the time, so the doctors were a bit perplexed......also, he was a male and only 18 years old. Needless to say, his senior year in HS was not fun. He was started on Plaquenil 9 months after the initial diagnosis. He has never been on Prednisone, except for a severe bout of pneumonia 2 years ago.
Flash forward 4 years. and he's doing fairly well. He's regained the weight and, then some, and his esophagus is *working* again. He developed Raynaud's last Spring but it's not too bad. He's also developed the dry mouth and dry eyes, but doesn't complain about it.
Keep posting and asking questions here as everyone is so nice, informative, and they are a wealth of information. Everyone here has kept me sane the past 4 years!!!
Take care, Everyone.
Posted 23 December 2010 - 09:18 PM
I have a daughter who was diagnosed with systemic scleroderma twelve years ago. Although she was not a child, was 26 at the time, I can empathise with you in a small way.
My daughter is still taking methotrexate. She returned to work after two years and luckily is doing very well. Life goes into a spin when something as traumatic as this happens. I spent so much time researching online that I was over reacting, but I know that this is normal.
I became involved with Scleroderma Australia, through Scleroderma Victoria, five years after my daughter was diagnosed. She did not want to meet anyone else with scleroderma for a long time. The fear factor was huge. Since becoming involved with the foundation the youngest member we have was diagnosed at 11 years of age. She was diagnosed three years ago and is under a specialist at the Royal Children's Hospital, and I believe from other specialists that he is extremely up to date with all treatments. This girl is still on methotrexate.
I guess what I am trying to convey is that we have no option but to put our trust in the doctors. There are many rheumatologists who specialise in Scleroderma, I expect that she is also under one of these doctors and that he/she is also a paediatrician.
My thoughts are with you Sacha, mother's feel so helpless and so responsible. It's a hard road to travel.
Please be assured that we are here for you and Katie
Posted 23 December 2010 - 10:53 PM
My name is Emmi and I'm not a mother myself, but I was only 6 years old when I was diagnozed with scleroderma. I'm now 20. I know this is a really complex disease for us "adults" to understand and I can assure you that it's even more complex when you've barely learned to read. If you want any advice I can only say that keep it simple and give answers when asked.
If you have any questions at all this is the place to find people willing to help. So welcome and I hope you're having a great holiday and all the best for the year 2011 to you and to your family!
Posted 24 December 2010 - 01:46 AM
A warm welcome to these forums to you and your daughter!
Sorry to hear that your little girl has been diagnosed with Systemic Scleroderma and that it's still not completely under control, despite the medication that she's taking. We do have a useful LINK HERE which may help you to understand this very complex disease a little better.
I'm afraid that I can't advise you personally about the effect of Sclero regarding a young person, as although I do have Systemic Sclero I was diagnosed in middle age and am sadly no longer young! (I wish!! ) However, I understand that Sclero does settle down after the first few years so perhaps it may be possible in the future for your daughter to come off some of the medication that she is taking. Like your daughter, I am also taking steroids, although my dosage has been reduced slightly and I'm hoping it will be able to be reduced even further as time goes on.
As Scleroderma is such a difficult disease to diagnose, it's really advisable to consult a Scleroderma specialist as sadly many rheumatologists don't really understand this very bizarre disease.
Please do post often and let us know how your daughter is faring.
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Posted 24 December 2010 - 07:27 AM
Welcome to the forum! We have information on juvenile scleroderma that you may find helpful.
I am on methotrexate, have been for some time, as are many others here.
Speaking as a person with scleroderma one of the most necessary things for me is support that comes from family and friends. This is something your daughter obviously has.
Take care and keep posting.
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Posted 24 December 2010 - 09:55 AM
Welcome to the Forum. I'm also very, very sorry your daughter has systemic sclerosis. That's got to be very hard for your entire family and dreadful for your little girl.
Guessing from your spelling of oesophagus that you are in Europe (we somehow lost the 'o' crossing the big pond to the Americas), here's a link to the EUSTAR information. EUSTAR is the EULAR (European League Against Rheumatism) scleroderma trials and research group. If you are seeking a pediatric rheumatologist with knowledge of scleroderma, there should be someone on there who can help you.
It's really difficult to know from a parent/layman's point of view what medications, in what dosages, and for how long are appropriate for a young child. Have you been able to have a frank conversation with Katie's doctor about your concerns? I could tell you what all I take (another medication has just been added to a long list), but I'm a geriatric systemic sclerodermian at 63. (I refuse to say victim and can't say patient because I am not. ) You might think about a conference with all of Katie's doctors (rheumatologist and pediatrician?). You could also ask if it would be appropriate to have a case manager assigned to Katie who would coordinate all the information and make sure all test results, etc. get to all the people who should have them. A case manager can also act as a patient advocate which would enable you to have your concerns addressed without having to have a 'face-to-face' sit-down with a doctor. A good case manager can also translate from medical-speak to something understandable.
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Posted 25 December 2010 - 08:14 AM
Welcome to the forms. I'm really sorry to hear of your health battles with Katie. It must be very difficult to handle the pains of a sick child. My heart goes out to you. We have several members that have children with Sclero. I see some have already come forward. I hope you will find a lot of support here.
Posted 27 December 2010 - 05:27 AM
Though none of us are pleaased with the reason we are brought here, we so appreciate the fact we have this forum. It is a very warm place to find support, caring and sharing of experiences with one another. Whether caregivers as parents, siblings or those afflicted, we all have a commonality and that is to become advocates through the power of knowledge, which is available here.
May you and your daughter become empowered as a result of being a part of this great Sclero Family.
Sending :emoticon-hug:s and Strength your way, Sacha.
Posted 27 December 2010 - 05:35 AM
I am so sorry to hear of a young child suffering from scleroderma. I spoke with my scleroderma specialist about pediatric scleroderma patients because I am involved in a dream granting organization for sick children and would love to help a child with the disease, but she told me it is extremely rare in children and doesn't know of any. Dealing with the disease and all the medications is hard enough for an adult to manage, yet alone a child. This forum will be a great help to you for your questions and concerns as you travel this path with her.
Posted 04 January 2011 - 10:38 AM
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.