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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 :(

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Hi Claire,

 

Welcome to these forums!

 

I'm sorry to hear that your daughter has been suffering with so many unpleasant and worrying symptoms. I've included links to Scleroderma Esophagel (throat) involvement and also Skin involvement which I hope you will find interesting and helpful.

 

As your daughter is hopefully having tests for her heart, lungs and throat, this may give you more information once they're all completed. In the meantime it's a good thing that her rheumatologist is going to refer her to a Scleroderma specialist, as they are really the best people with the expertise to deal with such a complex disease.

 

Do please keep posting and let us know the results of your daughter's appointment with her rheumatologist and the Scleroderma experts.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hello Claire

 

Welcome to the forums and I am sorry your daughter has scleroderma. Who is your daughter actually being referred to? Here is a list of scleroderma experts from the Scleroderma Society UK and here is a list of scleroderma experts from ISN and there are some near you. I'm a patient at the Royal Free London which a centre of excellence for scleroderma.

 

The Scleroderma Society has some 20 local groups that meet throughout the country to provide support to people with scleroderma from people with scleroderma and you don't have to be a member of the Society to attend. You might find it helpful, I run the group for Essex, London & Kent and have the most fabulous time!

 

The doctor that said the sores on your daughter's head don't need to be treated, did they happen to say what they are?

 

I hope your daughter's referral to a scleroderma specialist comes through soon and that the tests, I'm guessing ECHO, lung function and chest CT, are all clear.

 

Take care and please keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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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

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Hello Claire

 

Although I am just a layperson with scleroderma, no medical training at all, even I know it's not normal to break out in open sores nor is it acceptable for doctors to fail to tell you what they are, unless they don't know, which is what I suspect.

 

I know it may be a long way to travel but may I again recommend the Royal Free because they know everything about scleroderma, what signs and symptoms to look for, what tests to carry out, what treatments are best and they meet all the time. Being a patient at the Royal Free also gives you access to the scleroderma nurses who you can telephone inbetween visits for advice so you're not stranded between appointments. Most recently they have linked up with the gasto physiology team so can now refer issues of constipation and incontinence to them.

 

Take care.

 

 

 


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Claire,

 

I can also endorse Amanda's recommendation for The Royal Free Hospital; I'm also a patient there and as she has said they are a centre of excellence for the treatment of Scleroderma.

 

Although I realise it would be a bit of a trek for you and your daughter, it would probably be worth it to be referred there and be dealt with by experts who really understand this unusual and complex disease.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Claire

I've just read your comments. I have a 14 year old daughter who has just been diagnosed with Scleroderma last week. She was admitted to Yorkhill Hospital Glasgow last week after suffering from joint pains since March 2011 and in August eventually her hands started to curl up. We also attended Paeds, Physio, x rays until eventually 2 weeks ago she attended a rhuematologist who referred her straight away to Yorkhill. Within an hour of attending Yorkhill she started many tests which after 2 days they came up with a diagnosis, the next couple of days treatment was started along with steroid drips, physio and injections. The team were fantastic and are always at the end of the phone if we need them. Weekly injections are needed as is intense physio but at least we know what we are dealing with and not the fear of the unknown. Good luck with your daughter and keep pressing for answers.

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Hi Sharumeg,

 

Welcome to these forums!

 

I'm sorry to hear that your daughter has been diagnosed with Scleroderma, but it must be a comfort to you that she is receiving such prompt treatment and that she has such a good medical team. I've included a link to Juvenile Scleroderma to give you some more information and which I hope you'll find interesting and helpful.

 

Do please keep posting and let us know how she is faring. :emoticons-group-hug:

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hello Sharumeg

 

Welcome to the forums although I am sorry your daughter has been diagnosed with scleroderma. At least she is getting good care and as you say at least you know what you are dealing with.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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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

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Hi Claire,

 

Glad to hear that your daughter has received her appointments and is going to have more tests to help with her diagnosis. Hopefully her specialist will then be in a better position to advise you of the best course of action for her.

 

Do let us know the results of her appointments and tests, won't you?

 

Best wishes,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hello Claire

 

I am so glad that your daughter is having all of the tests in one go, it's the best way to do it! Please let us know the outcome.

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Claire

 

Glad to hear that you have got your appointment through for your daughter at last. It is a very long day especially if your daughter has all the joint pains like mine has. Her tests started on Monday lunchtime with bloods taken then visits from doctors then specialists, she was then taken for kidney, spleen and liver scans. Later that afternoon she was visited by a physio. Next morning it was off to check out the lungs, we then a chat with the OT, lunch then on to orthotics where she was fitted out with nighttime splints after dinner she had all the heart tests. Next morning she had the swallow test and a CAT scan. That afternoon treatment began with a steroid drip then a session in the gym for physio. It is a long time and can be upsetting for the child but the staff were great. My daughter is now going in for a weeks intensive physio next week and gets her chemo injection once a week but they are now having problems finding a vein for her monthly steroid drip but we will get there as I'm sure your daughter will. We wish you both luck and let us know how you get on.

Thanks Jo for the link; interesting reading and I'm sure I'll refer to it quite a bit.

 

Happy New Year to you all

Linda

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Hi Linda,

 

I'm pleased to hear that your daughter has had her tests and I do hope that she gets on well with her intensive physio therapy next week.

 

Please keep us posted as to how the rest of her treatment progresses.

 

Best wishes,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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