[ali12]

As many of you will be aware myself and Alison have been worried about her PM treatment at our local childrens hospital. Alison has lost all confidence in the PMT and hates the thought of attending her appointments
Our major concerns are as follows:

Alison had a nerve block on 4th July and has been unable to walk since then (loss of balance and coordination). The hospital can't see this as a turning point - they basically put it down to confidence and psychological issues and our consultant says that he has never seen this happen before. The strange thing is that a friend of Alisons had a nerve block done by him two months previously and her foot rotated inwards, her leg turned blue and she had to be placed in a cast for nearly a month. Had we have known about this before hand we wouldn't have given him permission to do the block without careful consideration. It only came to light when I met her mother and was discussing what had happened to Alison.

Medication - Alison had been prescribed Amitriptyline in the early days and it did nothing for her. I told the consultant this but his advice was that the dosage had not been high enough. As a consequence Alison developed severe blurred vision and had a fall which meant the RSD spread to her arm (luckily now much recovered after 10 weeks intensive therapy at home). I sometimes worry about the level of these drugs that he is prescribing for a child and also the rapid increase in dosages over a period of a few days
Alison was also taken off Baclofen about a month ago as the Consultant wondered if it was causing tension in her muscles. I thought Baclofen was a muscle relaxant so did question this at the time but was told it can affect patients both ways. I do wonder if this is connected to the increase in pain if the muscles are now contracting more and causing the pain to worsen

Forget the leg - lets concentrate on the arm !!! For the whole of the ten weeks when the arm was painful and dystonic the staff completely forgot about Alisons leg. It was as though they knew there was nothing they could do so they focussed on something else. Luckily I kept Alison weight bearing as much as I could so things didn't worsen. We are told that if she puts some weight through her heel it will stop the spasms but Alison has been doing this for the last four months and if anything they have increased in frequncy and duration

Progress - My MAJOR concern or wish if you like is that Alison had never been admitted into this particular hospitals care. Basically she walked into the hospital on crutches with a pain score of 7 out of ten and now cannot walk and has a pain score of 9. It sometimes makes me wonder if she would still be walking without the block and their intervention. Alison just wants to get back to where she was at the start but four months on we are in a worse situation that we were on admission

Recovery / Remission Rates - As you would expect, I ask our PMT about these all the time and the resonses vary depending on the direction of the wind !!! I cannot pin them down to any quantifiable figures - ie how many children have gone into remission, how many have improved slightly, how many still have flares or have worsened. They want us to speak to other young people and their families but I do not belive I will get a balance opinion as they only want to put us in contact with the success stories and not the ones receiving ongoing treatment. They also only treat 2 patients a year with RSD so it does concern me as to the level of experience they have in dealing with my daughters case - in particular the violent spasms and dystonia (which the consultant admits to seeing only once before)

I would basically like to seek a second opinion elsewhere, particularly at a centre who treat more than 2 patients a year with RSD. The stumbling block is that Alison is only 12 and must stay under the care of one of our childrens hospitals so we need to convince someone to allow us to seek a second opinion form an adult unit !!!
I need to go into Wednesdays meeting with a clear head and a rational approach. At the moment I am so upset for my daughter and the fact that I took her to a hospital expecting them to make her better but that she has, in fact, got worse
How would you approach this and do you think my worries are realistic

Any advice would be welcome - particularly from people who have sought or are actively seeking a second opinion

Many thanks
Andrea

[tayla4me]

Hi Andrea,

I am sorry I can't help you with places and people over there in the UK but I do strongly support your decision to seek another opinion.
She is not getting the care she needs and definitely needs the help of a Pain Management Team who specialises in RSD/CRPS.
I am sure there must be somewhere to go, I hope somebody can help her.
Fingers crossed for you both
Love Tayla

[ali12]

Hi - its Alison here,
Many thanks for your reply Tayla4me.
I am having my Physiotherapy session whilst my mom is seeing my PM doctor. Do you think me and my mom should cancel the appointment with my Physiotherapist so that I can go and see my PM doctor? or shall I just go to my Physiotherapy session and not see my doctor? I am not sure whether my PM doctor wants to see me.
Many thanks
Alison

[Sandel]

Alison Hi hon,

I think mabie you should go to the PT apointment this time.. the doc will talk to your mom and she will tell you what he says, and mabie ask your mom to ask that they make an apointment to see you if/because you want to see him.. but some docs won't say much in front of a child.. I think because alot of kids arent as mature as you are Ali, I think you must have been a pretty sensible girl even before the accident.. but a condition like this makes you grow up far too soon methinks aye? Keep up the research and hunt for answers you probibly will know more than the doc soon, so you know what to ask him and you know whats rubish.

Mabie your mom can call and speak to another doctor on your behalf.. let me do some brainstorming and I will PM you a few Dr's names and numbers that may help or have advice for you.

hugz lil bud,
Sandra

[ali12]

Hi Sandel,
Thanks for your advice. I am really hoping to find another PM doctor, I live in the UK.
Most of my family say that I am sensible, I probably agree. I have hardly ever being a child who causes trouble. I have loads of supportive friends and family who are great, they help me a lot. I don't know what I would do without my mom. I agree RSD does make you grow up faster than you should.
Thanks for your help and I hope that you are Ok.
Take care hun
Love
Alison
-x-

[nikmcjo]

Hey.

I am not familiar with places in the uk. But if there is a rehabilitation hospital for stroke victims/brain injuries/spinal injuries/etc (just more severe injuries, not just broken bones), I would try there. I went to one and they weren't 100% familiar with rsd but sometimes something similar to rsd forms to some stroke victims. And typically, pts and ots in that environment are better prepared for more difficult cases.

I dont want to lie so I will be honest with you, I went to one and yes, I got out of the wheelchair and can walk, but I am still in tons of pain and I limp really bad and my limbs freeze up all the time. but they were comparing my rsd to the previous girl who had rsd in her left foot who got a dvd on the pt treatments of rsd and it was a 2 week program. she brought the dvd to this rehab place and she completed the program in 2 weeks. But the dvd was AWFUL!!!!!!!!! it made it totally seem as if all kids with rsd are pretty much really whiny and faking it and the kids were running and jumping after like 2 hours into the therapy. They were kinda expecting me to be the same way and realized once I got there that hmm, maybe im not faking this but it took me like 4 months and they discharged me and said they did all they could do (had an immoble hand, 5 immoble toes, and one of my legs was acting up really bad and throwing me to the ground). but they just went by a pure rsd dx when there was more than that. and yes, my rsd spread to nearly full body after starting there (was originally my 4 limbs).

but they really were good there. it helped me being around others (not children) that all had diff. problems that we couldnt fully understand but we all bonded (if that makes sense). my friends there were all older than me (ranged from 18-86) and we all had different injuries but we all understood eachother and bonded instantly. they made getting through the sessions easier. if i didnt feel like going (which happened like everyday), they were the reasons i went. and they help if you get out of doing some things they would "accidently" misplace the buckets i used for contrast baths, keep the therapists busy so it would cut into my session a little bit, need me to help them do something, etc and i would do the same for them. haha, we were terrible. once, the pt had to separate me and mr harper (stroke) bc they realized we were up to something. but make sure if you go somewhere, have other people there. it helps a ton. and helps you adjust to people asking you whats wrong.


I hope this helps. Sorry if it doesn't. Good luck to both of you though.

Nikki

[tayla4me]

Originally Posted by ali12

Hi - its Alison here,
Many thanks for your reply Tayla4me.
I am having my Physiotherapy session whilst my mom is seeing my PM doctor. Do you think me and my mom should cancel the appointment with my Physiotherapist so that I can go and see my PM doctor? or shall I just go to my Physiotherapy session and not see my doctor? I am not sure whether my PM doctor wants to see me.
Many thanks
Alison

Oh Ali, how confusing for you
I would give the doctor a very wide berth if he/she is not helping you and in fact hindering your progress, whether physical or psychological!
I hope someone here can steer you to a PMT who really knows RSD/CRPS.
Maybe your physio might know someone?
I have read some papers from a doctor at Great Ormond St 's pain clinic, are they within your reach or have you already had experiences with them ?
Take care
Tayla

[Jomar]

[The stumbling block is that Alison is only 12 and must stay under the care of one of our children's hospitals so we need to convince someone to allow us to seek a second opinion form an adult unit !!!]

This made me think that maybe a letter, with copies sent to members in your government, or the hospital management, { anyone that might be able to pull some strings} with an explanation of Alison's rare and unusual health situation{ and the speed at with it seems to be progressing} etc, and then requesting that she be allowed to use the adult services for better care...??

Like in the USA we can write to our senators & representatives of our own state government or the Federal gov.

I don't know how the UK system is set up.

I did search this - "UK government websites"
http://www.google.com/search?hl=en&s...bsites&spell=1

[Vicc]

Hi Andrea and Ali,

I started to reply to you and the next thing I knew it had grown out of control; it may have been 1500 words and I wasn't half-finished. I tend to be wordy. I deleted it, but I'm wondering if my unkind words about something a physician said might still have you angry. I see that Ali has said some very kind and thoughtful things to me, so I know that if you're angry, you aren't teaching it to her.

Anyway that reply is gone, and I'm tired from writing it, so I want to focus on just one part of one paragraph that you wrote: Luckily I kept Alison weight bearing as much as I could so things didn't worsen.

I think the next words you wrote were a secret message to yourself: We are told that if she puts some weight through her heel it will stop the spasms but Alison has been doing this for the last four months and if anything they have increased in frequncy and duration

I think most people would have given up after trying anything for four months and seeing the problem worsen, so I think its ok to notice that things aren't working out the way you had hoped.

I also think that if my words here are successful they will generate a discussion of physical therapy. I'm not quite hijacking you, because I think you already suspect it is making things worse.

I think you should hear about this from as many people as possible, both pro and con. Learning from other RSD people's experiences should help you sort out the disconnect between what "they" tell you, and what you see.

I, of course, hope the discussion will lead you to rethink the actual cost/benefit ratio of physiotherapy. (Part of the costs are the damage the terrorists posing as therapists are doing)...Vic

[ali12]

Thanks Vicc
As I said in my PM I really do apologise if I upset you about the comments on Alisons Physician. I am certainly not angry with you at all. We are all entitled to our own opinions and at the time I would have believed anything the Consultant told me as I was hanging onto his every word believing he could put the disease into remission within a matter of weeks / months
As time has gone on and from bitter experience with regard to the treatment regimes at our local Childrens Hospital I now realise these people are totally out of their depth. They only see 2 cases a year and cannot provide any accurate statistics on remission rates, duration of symptoms etc.
It has made me realise that the support groups and the wonderful people on there are much better equipped to advise us on the best ways forward.
I should have realised that PT would not help Alison as it was intensive PT which caused the ankle to go into eversion in the first place, but these people do their best to convince you that they are much more knowledgeable than any of us mere mortals ever will be
Any advice you could give would be most welcome as I am aware that you have researched this subject extensively and will probably have more idea of what is happening in Alisons case that her own Consultant
Please do not think that I am mad at you, I really do respect your opinion, especially on finding a way forward through the minefield that is the UKs wonderful NHS system where we are TOLD what we treatments we can have and who we can see and cannot have the freedom of choice to select the best possible treatment without a lenghty fight with our Primary Care Trust
I always read your posts with interest and as a very concerned parent would love to hear anything you have to say with regard to Alisons situation, particularly the problems seen immediately after the bier block
Many thanks
Andrea