What should I do?

Im 16 and have been in hospital for the majority of 3 years, one of the conditions I have is called Elhas Danlos syndrome (type 3/JHS type), my consultant wants to do an intense rehab program for 3 weeks (I disagree). He wants me to do full time at school, do intense physical therapy and get the nurces not to use an hoist but to drag me into the wheelchair. I'm currently in hospital for abdominal pain, sickness, weigh loss and dizziness. If I did this rehab program I would loose weight (im currently 39kg and should be 63 an the very minimum), I'd be getting sick in the hospital school all the time, could faint because of the dizziness and be crying in pain! I going to Great Ormand Street hospital in London under rhumertoligy because the Gastroenterology dept is full, I'd do the rehab program with rhumertoligy at Great Ormand Street hospital and also see Gastro. Yes, I don't want to be in pain but also don't want to get sick all the time. This Rehab program could make all my Gastro symptoms worse but no one see's that, iv told my consultant I'll do the rehab program after I stop getting sick but he won't listen to me! School would also be to much Cox I haven't done a full day at school for 3 years! How do I persuade my consultant and my parents to not go ahead with this rehab program❔❓❔❓❔❓

10 Replies

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  • Sorry you are so upset about this plan. But maybe if you can't persuade them not to go ahead right now you should just give it a go. It may actually not be as bad as you are expecting. They will totally understand rehabilitation there, so it could just be that you do improve dramatically with an intensive programme. They wouldn't be suggesting it if they didn't think it would be useful. Anyway, what have you got to lose? It is only three weeks, so I would think worth a try. Have another chat with your parents about what your worries about it are, and see if they can get advice from the rehab unit that will reassure you.

  • Hi Barney- welcome! I'm sorry about your situation- that's a real bummer.

    I'm sure you feel you've put up with enough hassle and pain over your life- and now they're putting this gun to your head. Skanks!

    When you are in pain and constant fear of relapses , it is sometimes difficult to see straight. As Earthwitch has said - they are the professionals who do know best and can see the whole situation from a perspective.

    I had a massive traumatic accident a few years ago when a tree I was felling fell on me. I was airlifted to hospital and was in ICU for over 2 months. Broke up a whole load of stuff - ribs , spine broken , lungs, shoulder and kidney failure. When I finally escaped ICU ward and they wanted me to start rehab- I had exactly the same reaction as you! Why more pain? You don't understand my situation . I'll break something else - and so on. I used to scream just moving my arm in a circle- they never did get around to setting the shoulder ( snapped in two places!)

    So- I guess what I'm saying, is to give it a go- unfortunately - the team has great experience and are going to do what's best for you.

    It won't be easy - put on the ears and listen to the music.

    Great Ormand st is a fantastic place - and you are incredibly lucky to be getting treated there.

    Just imagine if you were in Syria right now !- -- yeah , right- I know you don't give a toss about them- but you are one of the lucky ones.

    All the very best in your future. Cheers.😎

  • Dear friend, I felt so sad reading your posting. There is nothing worse than feeling that you not being heard. The hospital will have a patient advocate, this is someone who is not biased who can help you to communicate with your medical team to find an acceptable solution that you are happy with. My strong suggestion is to talk to the charge nurse and tell her that you would like to see the patient advocate. My warmest wishes. PS I know you can't attend school but some work on your spelling will help you along life's path.

  • With the greatest of respect-- but how picky can one get? The spelling police were not required for the opening post and I feel it was gratuitous for anyone to comment on such irrelevant particularism in such a heartrending letter.

    This is from a young person who has a very particularly traumatic medical situation , looking for our help-- and what do they get?

    Tendentious criticism.

    Give me a break.!😤

  • Poor Madlegs 1

    Is this the best you can do with your time?

    I feel very sorry for you

  • hi, your message makes me want to cry. My son was about your age when he had to go to GOSH for rehab and although we felt the doctors didn't understand him, the physios were like angels! They were amazing and so kind to him.

    We found the big cheese consultants didn't tend to listen to him, or us, but the nurses and physios in the intensive program did.

    I hope this gives you a tiny bit of hope.

    I don't know if I'm allowed to say that I'm praying for you, and whether you believe in God, but I am.

    Take care, -remember you are not alone!

  • Hi Barney. Take note, the above wise words are from people who have had great traumas in their lives as have I. The only way forward is to bite the bullet and show them what you're made of! Sounds like you are suffering from one of the most debilitating of all maladies - FEAR. The longer you remain as you are the harder it will be for you to live a life which is more fulfilling and worthy of you. I understand that it will be difficult for you to get out of what have become increasingly easy bad habits; being hoisted all the time, not going to school etc. Learning new things will help you learn the tools with which to deal with your condition, distraction if nothing else. It sounds like you have found yourself in an entrenched me-me situation and perhaps the nausea is made worse by your fear of the unknown as well as any meds? I too am EDS III and I too am in constant pain but if I sat around and did nothing to improve my physical self, I would find myself in even more pain and increasingly depressed. You have many years ahead of you and I wish you well in finding the courage and strength of character to lead a life nearer to those of your own age. I am not being unsympathetic, I too think you need to speak to a counsellor, who will hopefully help you in getting over the panic of the proposed changes in what has become an all to comfortable routine. I wish you every success.

  • Hi Barney, I have a 14 year old daughter being offered the same rehab and she is very much in the same mind set as yourself!She is refusing to go and has told them she is gilleck competent and has the right to refuse this treatment!She has however told them she doesn't dispute it might be beneficial but at this moment in time she's not ready to go.Her consultants have agreed she is the patient and as long as she is willing to re-look at the rehab at a later date they agree with her.As parent's it is very hard to not keep trying to push our kids to try anything because we are so desperate to see you feeling better and watching you suffer is agony for us but we also have to try to understand your choices as you are soon going to be making all choices for yourself.Good luck and I really hope they sort out your pain relief.

  • I am afraid that you are not going to like my answer, because, like the others, I think that you should give it a try too. At 16, school is especially important, and even if you do not take your exams next year, you will need to take them soon. If this course of treatment is more than you can take, the nurses and physio's who are doing this will soon realise that, and stop, or reduce, the treatment. The only way to prove that it is too much is to do it, give it all you can, and show how it actually effects you. You sound intelligent, and unless your life is to be lived 100% in hospital beds, with hoists and carers, you need to give this a try. Wouldn't it be nice to be a bit more independent? To be outside the hospital environment and not too worried about how to get to the loo?

    This is not a matter of throwing you into the public school system, and seeing what happens. You will have all the properly qualified medical aides there, and if you become more ill, they will know how to deal with it, and prevent an escalation. They will stop you coming back if it is too much for you to deal with. The way your body reacts will tell the doctors a lot about how your illness is progressing.

    If you try it, give it a good try, do your best, and report your symptoms accurately. Don't exaggerate how bad you are feeling, but don't underplay it either. You may find you feel better than you expect! I know it is painful, and frightening, and the prospect of more pain and illness is the last thing that you need, but you have to grasp all the possible treatments when they are offered, because they might not be offered in a years time! If it is too soon, they will stop it, but they have done this with a lot of people, and have obviously seen that it can work well, at THIS time in the illness of most patients. You are Unique, but your illness isn't, so please give it a try. Do the first day, and if you survive, do the second one too! Keep on, one day at a time, and see how it goes. Think about it as 21, one day treatments, not one three week one. I know that at your age, 3 weeks seems like an awfully long time, but it really isn't. Christmas is 10 weeks away, and I am already buying presents, and worrying about the decorations! Try just 21 days treatment, to see what happens, taking it One day at a time. You are stronger than you think, and you may find that this treatment shows you that stronger than this illness.

    I will be thinking about you! Let us know when you start, and we will ALL be sending you our good wishes. The tell us how you get on, as a daily diary! You are in a safe place here, amongst people who are all on your side, but all of us know about bad pain and illness.

    Elaine

    xxx

  • You have not stated what the rehab program involves. You are complaining, but you have not really given any reason as to why you are right and the consultant is wrong. The consultant is the state-registered expert and you are a lay person. You are going to lose the argument.

    The definition of an expert is: "X is the unknown factor and a spurt is a drip under pressure."

    You are going to need to do your own reading and educate yourself so that you have knowledge to challenge. You have an advantage in that there is a revolution in the understanding of the body is happening right now. Everything your expert learnt about how muscles, tendons and ligaments work is now known to be wrong. This means that the consultant who gained their knowledge before 2007 would have been given the wrong information concerning how muscles, tendons and ligaments worked. It is likely they are working on the old out of date knowledge.

    The important new knowledge concerns Fascia. Fascia is the bit that medical students threw away when they did their human body dissections. Fascia it now turning out is very very important for the proper functioning of the body. Can I explain more on this. Unfortunately I cannot as I am still trying to get my head round the topic. 2007 was the year that the topic was presented in a conference at Harvard medical school.

    You are going to need to speak to your parents. They are going to need to look up the information and read the books. You are going to need to read up about your medical condition and Fascia. This is going to be difficult because of the lack of science training that you have. However you have what ever you have and you are an expert on what you have experienced up to now. Unfortunately you also lack experience on possible alternatives.

    Get a copy of: "Born to Walk" by James Earls ISBN 978-1-58394-769-2. Amazon is a good place to get a copy. You will find it difficult reading with your level of knowledge. However it will give you tools to challenge the consultant and give you some ideas to help with the process of managing your condition.

    Kingston pain clinic has an Alexander Teacher on their staff and it is worth getting their help.

    Hope I have been helpful.