Conflicting advice about child leaving me confused.

[nonyanomemory]

I wonder if your son has been assessed for POTS. This sounds tremendously stressful and you have my complete empathy. Aside from that I can't offer any substantive advice right now as struggling with my daughter aged 20 now and how she is coping with a life with EDS. I understand though how utterly frustrating and worrying all of this is. Obviously each individuals needs being different the common denominator is how awful it is wanting to help one's child so much yet feeling so helpless.

[madmum]

Thanks. As yet no he has not been assessed for POTS. No really sure what it is. It took six years and a change of hospitals to get him diagnosed. He is reluctant to tell the medics how he feels as previously he has notbeen believed and i have been accused of being mentally ill by insisting there was something wrong. Sorry you are having difficulties,i am probably lucky he could be a lot worse. A friend said i should be grateful i have not got her autistic son who does not speak,i am but it does not make things easier.

[tireesix]

My own dad thinks that I see stuff in the girls that isn't there and its really frustrating, makes me furious, otherwise, he says they are doing stuff for attention, they are 2,4 and 6 FGS. Previous Docs haven't been great and I had my last GP tell me that children can't have Fibro and yet according my HMS/EDS books they can. I am positive that my 4 year old has it.

Reading through your messages, that was really the first thing that jumped into my head.

The other thing that I was thinking about was that for some kids, being pushed to do stuff can make them very anti what they are supposed to be doing. Add in learning to deal with your health problems mentally, dealing with the physical side, plus the fact that some things he has spoken about haven't been accepted and he has been disbelieved and really, you have a good set up for depression. Not going to suggest anti depressants (I was put on them aged 13/14 and they really messed me up for a good few years) but I am thinking along the same lines as someone else did on this thread, trying to find a friend for him with similar issues maybe. I guess, he also has the teen thing going on as well so it can't be easy for him, or for you for that matter, especially as you mentioned having another son with health problems as well.

I have a book here somewhere, how to listen so your kid will talk and how to talk so your kid will listen, not saying that you are rubbish or anything but I wonder whether it might have some tips for similar situations???? If I find the book you can have it, I don't whether it will help but sometimes just trying anything you can think of can help at least make you feel like you are doing/achieving something if you see what I mean?

[madmum]

Thanks. He is also being referred to child and adolescent mental health services. His rheumy realises he has lost confidence in himself and his joints. I agree he is probably going into puberty as many signs suggest it. The other child is my friends son,i have just the one and love him dearly. Maybe having my own health problems and pain perhaps i am not always at my best,perhaps he feels i have enough to deal with. Sometimes we are also too close to our kids. He has also been bullied a lot at school and was also living through domestic violence(injury from that brought this issue to the fore and was why the hospital appeared to not want to get involved). He is also a young carer and has received local and national awards so feels a degree of responsibiity for me. I now have one arm in plaster and immediately he said he will need to do more looking after this week(ironic that i should be doing it for him). So yes he has a lot of issues at the moment. I think 10 is a difficult age as he is no longer a child but not a teen/young adult. He is discovering who he is and now has all this to deal with. He also says he will miss his pets,perhaps substitutes for siblings he will never have and bodies that accept him for who he is and do not bully him. I will do or try anything for him.

[shep2302]

Hi
im really at my wits end so many people are now involved with my daughter she has hypermobility syndrome, bowel and bladder problems now being tested for ruemotied athuritis (sorry about spelling).
im in a situation now with that physio dont agree with consultant school dont agree with physio, and now the latest my daughter has been started on movicol and health visitor was contacting school nurse to ring me today to talk about a 7 day plan? and to get CAF involved as im really struggling to get to grips with it all and guess what the school nurse doesnt agree with the health visitor!
its really starting to grind on me now dont know who i should be listening to and trying to juggle 3 other children aswell who are all feeling the effects of whats going on with our little girl
am i the only on going through this if there is anyone else having same problem how do you deal with it!
sue

[Rosie]

Hi Sue

There are a couple of things i can think of. Firstly, can you request that you have someone assigned to co-ordinate your daughter's care? When a child (or adult for that matter) has needs that are spread across several medical areas it is important that that care is co-ordinated. I am sure that this is talked about ny another member, i will try and find it for you.
Secondly, can you request a meeting of all the parties involved? You should not be the one to have to sort out squabbles between different health professionals. they should all be putting your daughter's needs before anything else.

Rosie

[shep2302]

totally agree rosie my health visitor has said there a thing called caf that pulls all parties together but it had to go to my school nurse as grace is now 5 the school nurse rang today and said she didnt feel in needed to be done as grace was getting appointments through again being told something different

[Rosie]

Hi Sue

Try putting it in writing to the school nurse (copied to whoever you think might help to get it going) saying that you want thisto be set up for your daughter, as you are receing conflicting advice about the treatment she should be receiving. It is harder to ignore a written request, You can also add a time limit to the request e;.g. Please let me know within the next 2 weeks how this will be implemented.
Unfortunately we do sometimes have to become quite firm to get our children what they need, easier said than done I know.

Rosie