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      Upgraded Sclero Forums!   05/18/2017

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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

ISN Chat Host

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

ISN Chat Host

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

ISN Chat Host

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

ISN Chat Host

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

ISN Chat Host

International Scleroderma Network (ISN)

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Hello Linda (maybe Claire as well)

 

I have a couple of suggestions as a non medical layperson. Have you considered a Hickman Line? I have a friend with scleroderma who has one due to the lack of cooperative viens. A Hickman line is an intravenous catheter that can be used to draw blood as well as administer drugs on a regular basis. It saves having to be stuck over and over again while a nurse tries to get a needle into a cooperative vein. There's also a portacath, have a friend with one of those also, a catheter connects the port to a vein under the skin and medications can be administered and blood drawn. Again the idea is to miss the neverending needle sticks but I confess I have no idea which is better or what distinguishes between the use of one or the other.

 

Maybe something to discuss with your daughters' scleroderma expert because like it or not the treatment is going to go on for some time.

 

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

 

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

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Hello Claire,

 

Oh Yes we definitely do have stomach problems. I am 67 now (for the next 3 weeks!!) and for me the noticeable thing is Gastritis which is inflammation as far as I know. You probably know how Scleroderma can affect the whole system from mouth to rectum eventually. I have had recognisable Limited Sclero since I was 22 but because it was not identified until about 10 years ago, I now have an absence of peristalsis and other difficulties which need ongoing attention, and do limit my life a bit.

 

I remember having an episode of severe stomach pain when I was about 11. I can remember the pain! oh yes!! and remember that I had a barium xray which showed nothing. Mind you, this would have been in about 1955 and we didn't even have antibiotics in general use and hardly anybody knew about DNA then. So I am not surprised really that they could see nothing on the xray. When I mentioned that episode to my Gastro Specialist after I had been given a diagnosis he thought that it could well have been the beginning of the disease, considering the state of my oesophagus now.

 

I don't remember any other investigations, but it is not such a long time between 11 or 12 and 22 when I know for sure I started having frequent gastritis discomfort. I thought it was stress and all my own fault for not being able to cope and so on and so on, which was the same story that was trotted out to me for years. The thing is that there are medications which can help and I know that she is still very young but it is better to be comfortable surely than to live a life of misery (even if it is intermittent pain)

 

Like so many of us, you and your wee girl will find that you just have to tough it out when dealing with unbelieving practitioners. Every now and then you will find a sympathetic ear on a knowledgeable person and they are gems to be treasured.

 

From my experience, the ones who are most open to learning about this disease are the very young ones. The ones who are working as Registrars and still thinking about doing Post Grad. work. I have been visited by many young doctors while in the Emergency Room, and nurses too, who are keen to hear as much as I can tell them. As the years go by there will be more and more savvy practitioners out there but for now we have to be our own best advocates.

 

My own daughter grew up with tummy and joint pains, our general practitioner sent her to a Rheumatologist who said there were signs of something going on but couldn't say more than that. As she got older the problems increased until as a young moher with 2 little ones to look after she was so sick at lease once a month that I had to step in and help. Eventually I heard a talk by a man who specialised in Coeliac disease. He described our daughter as a toddler and youngster so closely that I suggested she suspect a gluten intolerance. She has been gluten free and well!! for 2 years now. We can't remember the last time she spent a day in bed with a bucket!!!!

 

If only we could get the right advice at the right time it would make so much difference.

 

You are both in my thoughts,

Warm Hugs and best wishes from the upside down side of the world - it is supposed to be summer here but you wouldn't know it!!!!

 

JudyT

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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

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Hi Claire,

 

I'm sorry to hear that your daughter's appointment was a bit of a disappointment and you don't really feel that you're getting anywhere. I'm afraid quite a few of our members have been in a similar position, which is why we recommend being dealt with by a Scleroderma specialist as it is such a bizarre and complex disease.

 

Thankfully, I'm (so far!) one of the few cases that haven't suffered gut involvement; I do get heartburn and sometimes a little reflux but my gut feeling (if you'll pardon the pun!! ;) ) is that this is caused by the strong medication I take, rather than the disease itself. As Judy has said, gastrointestinal involvement is a feature of Scleroderma with which sadly many of our members do suffer.

 

I do hope that your daughter's appointment tomorrow with her Paediatric Rheumatologist is more productive and that you can get to the bottom of the horrible symptoms she's experiencing.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hello Claire

 

So is your daughter seeing one of the recognised scleroderma experts as show in the list here? In my opinion as a patient and this is purely my opinion...when some doctors don't know what's wrong, rather than admit it, they play the physcological/depression card and to do that to a child that clearly has scleroderma because they don't know enough about sceroderma ain't right...in my opinion.

 

You've been given the link by Jo to gastrointestinal involvement, the fact that there are pages and pages and pages abut it is a bit of a giveaway when it comes to how frequent a symptom it is.

 

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

 

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

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Hi Claire,

 

Well, at least your daughter has a diagnosis, even if perhaps it's not what she really wanted to hear. I do hope the medication they've prescribed will help her; I'm not taking Methotrexate but some of our other members are and I think have had good results from it. I do take a small amount of steroids which should be prescribed with caution for Scleroderma patients but they certainly improved the symptoms with which I was suffering.

 

I'm very sorry that she's feeling so down and probably a bit overwhelmed; I think the worse thing I felt was a lack of control. In my case diagnosis and treatment happened so quickly my feet barely touched the ground and I was a bit worried at that point. Once I was able to get a little more control over the things that were happening to me I was a lot happier (I am a bit of a control freak, I think! ;) ) I've included a link for you and your daughter on Emotional Adjustment which I do hope will help you both and it's good thing that your daughter can talk to her general practitioner and school nurse which perhaps will also help her to come to terms with her illness.

 

In the meantime here is an extremely large :emoticons-group-hug: for you both (I'm the red one! :emoticons-i-care: )

 

Best wishes,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hello Claire

 

Loss of control is part of what scleroderma does, actually I would think any chronic illness would do the same thing. It's a shock to find the one thing we take for granted, our body, can't be relied upon anymore and we can't do anything about it, in addition there's the ever present possibility that this body could do anything! It's a lot to come to terms with for anyone let alone a 15 year old.

 

I have started bereavement counselling, I will have had scleroderms for 5 years in August, to try and adjust to the loss of the life I had so I can build another one. Easy it ain't but I intend to see it through, not just for me but my wonderful husband.

 

At some point in the future some sort of counselling may help your daughter and of course you.

 

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

Glad to hear that you are now making progress. My daughter is now on methotrixate once a week (which myself and husband are going through training so that we can administer the drug itself, handy for holidays). She is undergoing steroids once a month, hydrotherapy once a fortnight and wax therapy once a fortnight which she finds helps her hands). She has lots of physio to do, 6 different excercises a day and thankfully she has been doing them no problems at all. We have had an OT out to the house and things are falling in place there and also out to the school. At the end of the month there will be a meeting with the school, gp, community nurse, our Paedatric Rhuematology nurse, physio and ot so they will all work together and help out. Shannon also wears nightime splints to stop her hands curling up even more. Our nurse has also helped us to fill in forms and I have found out all about different groups (unfortunately not one of them assosciated with Scleroderma) in the area which can help with form filling, grants, aids etc.

Shannon has down periods but very rarely, I am lucky that she is managing to cope with school and see her friends which are giving her a boost. School are also looking into how her disability will affect her exams so I think the ball is rolling in all the right directions, she is still having problems with veins but we are trying different ways to overcome this and they have decided to do blood tests once a fortnight now as the trauma was getting to her.

It's a learning curve for us as well as her and our lives have turned upside down as well but we will get there.

Take care and I hope your daughter gets on okay.

Linda

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