32 posts in this topic

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)

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

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)

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

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)

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

Hello Linda

 

It's great to hear that your daughter is getting so much help and support, that her friends are still there for her. It may sound cliched but it's one day at a time with scleroderma otherwise it can be overwhelming. Enjoy a good day and get through a bad one knowing a good one is just around the corner.

 

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)

Share this post


Link to post
Share on other sites

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 (Occupational therapy) has ordered a wrist/hand splint to help with her school work. She returned to school this week but only part time and if she was up to it. She managed 5 half days but this morning had no energy at all. Her stomach pains haven't gone altogether but there is a significant difference in that she stands up straight now whereas she was bending over, holding her stomach before the treatment started. She still shuffles along unable to walk at normal speed. Physio have given her some balance exercises to do and we return there next week.

A lot of school work has been missed, but she is adament she will catch up.

I received some book marks from the Scleroderma Society with details of the condition. I always have these in my bag when we visit our local hospital and the university trainees now know about all about scleroderma!

 

I'd like to thank you all for your help.

 

Claire x

Share this post


Link to post
Share on other sites

Hi Claire,

 

I'm very pleased to hear that things are settling down now for your daughter and that she's coming to terms with the disease a bit more now.

 

It's excellent that you are able to be dealt with by a hospital that has Scleroderma specialists so at least you'll be able to feel confidence in her treatment.

 

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)

Share this post


Link to post
Share on other sites

Hello Claire

 

I am glad you now have specialists on board and that your daughter has been able to go back to school. Just make sure she takes baby steps because if you over do it BAM! It's difficult to find a balance between making the most of a good day and not overdoing but overdoing it will only ensure a lot of bad days.

 

It is important to give your body time to recover from activity when you have scleroderma and for us that recovery can be days or weeks.

 

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)

Share this post


Link to post
Share on other sites

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 to do her work. In fact I let her get on with it and she does - but they sent her to this school and in 4 part time days they'd been for a visit to a museum and sat in class doing hardly any work. She would have done more work at home! She didn't deserve to be there and felt as though she was being punished so we visited her usual school and felt we had to get her back there or she would have to go to the medical school, which was a waste of time.

I realise this isn't a problem for your discussion site and I am looking at the local council at the moment. It would be no problem to me if they sent a tutor to our house. School mentioned her resitting the year, this devastated her.

I have realised she has done too much in the 3 part time days, though she felt she could cope. I now realise how big a condition this is and will talk with her today. We see the specialists on Wednesday where we can discuss more than we did last time we saw them. We haven't seen them since she was diagnosed.

Thank you so much

 

Claire

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now