Am so annoyed but not sure what to do now

illihor

Kayleigh last saw a consultant on 16th April down at our local hossie and Bristol came down aswell so kinda a double whammy. Anyway after that appointment I think I even posted on here that they wanted another MRI done, then bristol wanted her to give her steroid injections into some of her joints. Def her wrists and possibly her neck/jaw depending on MRI results.

Well since then we've been waiting and waiting. Physio has pretty much dissappeared but hydro is still ongoing every week although we kinda just get on with what we need to there, this week was hardly anything she was def not herself.

We were up CYPOD (children and young people outpatients department) for her 4 weekly bloods to be taken as per the norm for MTX. I mentioned to the nurses that we still hadn't had any letter from that meeting or heard anything re an MRI and even they thought it an excessive amount of time.

Called up the rheumy secretary to be told yes she remembers the file well as half way through the letter the dictation had been recorded over omg how does that happen upshot is we won't be getting a letter and the secretary said that she had written an email about it, but I guess as it's just a letter nothing major, however as soon as I mentioned MRI and that Bristol wanted her for steroids well the phone went quiet.

She then announces sorry there is nothing written down and obviously her report was recorded over so I have nothing more on her file. omg she's NOT even on the waiting list for an MRI let alone anything else that may have been said that I have forgotten from that meeting, I rely on those letters as I can never remember what has been said especially with the amount of people in the room last time.

The secretary said she would email this consultant then called me up later to say she's on leave, so what on earth do I do now. One thing I do remember from the visit was they asked me any dates we couldn't do and when would be best timing wise, I mentioned a holiday in August and they said oh no it will all be done well before then don't worry about those dates, perhaps best during term time so no disruption to my other children I agreed, but hey there is only 5 1/2 weeks left of term how much notice they planning on giving apart from the fact she's not even on the list.

Do I call Bristol on Monday and ask them about it or wait for our consultant to return (whenever that is) I'm at a loss now I've informed our local hossie of our holiday dates as you can bet they will do it then grrrrrr. So upset and angry if I didn't chase then who would know we're currently waiting for all this to happen

Michelle xxx

illihor

well I just took Kayleigh out of hours dr's as she woke up this morning with her pillow soaking with gunk from her ear. The doctor today told me that while she's on Methatrexate she can't have penicilin that's news to me you would think especially in a child that would be something they would tell you, I'm sure she's had amoxicilin since being on it. He told me (and showed me) just how long the list is of drugs she can't have while on MTX

Locum dr's can really be very helpful sometimes and explain things so much better than your own gp, and he was very knowledgeable about JIA

Any way she's been given erythromycin lets hope this helps her.

speedalong

Hi Michelle keep on starting to read your post ... and then have to tend to S who is grumpy, mardy and tired today ... hoping he isn't sickening ... I will eventually read the whole thing and the update and reply ... sorry ...

Speedy

speedalong

Oh Michelle - just read both your posts properly. What a nightmare ...

how ridiculous the secretary didn't get onto it the minute she realised their was a problem with the dictation! Is the rheumy secretary the consultant's secretary you are referring to? If the consultant's secretary is a separate person ... then I would ring her myself on Monday and explain the situation - their might be a registrar type person who can reorder the tests needed. If not joy there find out how long the consultant is on leave for and if this is unacceptable - you could either see what your GP can do or as you have two hospitals teams involved with Kayleigh - contact the other hospital and see what they can do. As you haven't got enough to deal with. Good job you started asking questions.

Re her ear infection - poor wee thing - she is going through the mill at the moment. At least she is on an antibiotic. I have as similar thing with S - he is on epilepsy meds and they condradict with many other meds too.

Hope she is starting to feel a bit better and you aren't too stressed!! Be ready to hit the phones on Monday and keep a record of who you speak to and the date and time - so you can hold everyone accountable if necessary.

Good luck and when you have time(!) keep us posted.

Speedy
(((Hugs))))

illihor

Our consultant that's up the hossie is currently on mat leave, another paed is taking over the cover she's very good at her job don't get me wrong and she is a specialist in the field. Everything to do with paed rhuemy she has her own rhuemy secretary that would normal deal with the mat leave dr's job. kinda confusing but it's the only secretary we go to. I'm still in shock that they never bothered to chase it up properly.

As for her ear infection that is def on the mend with this new medicine. She's stopped waking up in the night in pain and is happy (well happy for her if you get me).

I'll call Bristol tomorrow as I've been very busy today with 4 children I forget things all the time lol

Michelle xxx

illihor

Well I have now spoken with the Bristol consultants secretary and she is on the case. I feel so much better as she has put me at such ease. She even asked the question why didn't our hospital contact them to ask for more info if a dictation has been recorded over. She said she probably won't be able to get back to me today about this as the consultant isn't around today but also at the same time hinted that's she's going to do her best to get hold of her. As a secretary she wasn't happy about how kayleigh has been treated and that she's not even on the list fir MRI again hinting that dr C wouldn't be happy either.

I so hope something is sorted soon as long as it's not going yo be a rush job quick get her in type thing. I'm just grateful MTX is doing it's thing and she's not in the huge amount of pain she was in, still get flare ups and bad days and still using wheelchair as still can't manage to walk all the way to school but we both feel more in control and we're increasing the pressure of getting her to do things b herself more. Not sure if this is good as don't get to see physio anymore but she's happy and when she says can't do stairs we now help her, rather than you can do it as she does them 95% of the time now asopposed to the 0 she was doing.

Oops I've rambled on again lol

michelle xxx

speedalong

Hi Michelle, well done - sounds like you have got things moving again - well done. If the secretary doesn't get back to you soon - then contact her again.

It sounds like you have got the right balance between encouraging Kayleigh to do more and helping her when things are really tough. All those with arther have to decide what they can manage and what they really can't ... don't do enough and your joints suffer ... do too much and you spark a flare ... hard enough for an adult to get the balance right.

Why has physio fizzled out?

Speedy

illihor

Bristol called me back the same day she has an MRI (jaw) and ultrasound of hip on Friday 25th June. Never expected that to happen that's for sure and although it's going to be a long day I'm glad that things are finally being done.

As for physio I'm not sure about that, we had the meeting in april with bristol they mentioned she needs more physio, we only had one more session that they had a trainy in with us (Kayleigh doesn't do well with new people AT ALL takes ages for her to warm up to them) this threw her off and she cried/screamed the whole session was told we would be called re another appointmemnt she called I was out i called back she didn't have diary said she would call back when she did and i haven't heard since. we do hydro supposedly every tuesday but that's very hit and m iss as well.

I tried getting her to do her neck exercise today omg she screamed the house down in pain, won't be trying that again any time soon poos lass. Think I'll just plod along and speak with bristol consultant when and if we next see them as i'm getting very disheartened with my local hossie at the mo.

Michelle xxx

speedalong

Hi Michelle,

Bristol called me back the same day she has an MRI (jaw) and ultrasound of hip on Friday 25th June. Never expected that to happen that's for sure and although it's going to be a long day I'm glad that things are finally being done.

Well done for getting that sorted, the sooner the better.

As for physio I'm not sure about that, we had the meeting in april with bristol they mentioned she needs more physio, we only had one more session that they had a trainy in with us (Kayleigh doesn't do well with new people AT ALL takes ages for her to warm up to them) this threw her off and she cried/screamed the whole session was told we would be called re another appointmemnt she called I was out i called back she didn't have diary said she would call back when she did and i haven't heard since. we do hydro supposedly every tuesday but that's very hit and m iss as well.

I would ring the physio again - when you have the strength .... it's always one long fight isn't it?! Lots of children cry at physio to start with. You do have the right to ask for no observers/students to be present - and if you explain why I'm sure they would understand. Keep the hydro going even all she does is mess about in the warm water ... the warmth will do her good.

I tried getting her to do her neck exercise today omg she screamed the house down in pain, won't be trying that again any time soon poos lass.

Does she not do her physio at nursery? Most children do it best when not with their parents!!

Think I'll just plod along and speak with bristol consultant when and if we next see them as i'm getting very disheartened with my local hossie at the mo.

I'm not surprised you are feeling disheartened, let's hope this is just a blip. At least you have Bristol fighting Kayleigh's corner.

Take care, you are doing a fab job.

Speedy

dreamdaisy

Good luck on Friday. DD

illihor

I wish nursery would do it but no they stick with their curriculum and that's it. I'm trying to get a statement for her when she starts school so that they WILL HAVE to help in that.

She is good at doing physio at home as we play games and with 3 other children who also joine in she doesn't realise what she's doing most of the time. The others all love hanging off the sofa to watch telly (it's up on the wall) once I showed them how to do it as it's something physio told us to do for her but she cries in pain every time. I can get her to look how tall trees are and we are getting closer to the trunk before she stops looking but I guess hanging her head backwards is a lot harder and she just couldn't do it, her cry was totally different from the I don't want to but mum type of one.

At least we've had a letter from Bristol very very short and brief compared to ones we've had in the past but at least I know what the game plan is now and it still looks like a 3 day therapy admission to bristol after the injections to ensure physically and emotionally kayleigh is moving forward which is a good thing as i've lost faith with down here at the moment.

Michelle xxx

speedalong

I wish nursery would do it but no they stick with their curriculum and that's it. I'm trying to get a statement for her when she starts school so that they WILL HAVE to help in that.

Michelle, that is a good plan - you need help to do this as you have a lot on your plate. Is there a professional helping you with this?

She is good at doing physio at home as we play games and with 3 other children who also joine in she doesn't realise what she's doing most of the time.

wow - sounds like you are doing great - involving siblings is a great idea, makes it more fun for Kayleigh and means the other children don't feel left out.

The others all love hanging off the sofa to watch telly (it's up on the wall) once I showed them how to do it as it's something physio told us to do for her but she cries in pain every time.

At school we do the stretching over a physio ball - but as Kayleigh is small, a pilates ball from Tesco or Argos or a large space hopper would do the trick. That way you can lie her on it, she will be well supported and you need only to gently tip the ball a bit (gauging her reaction, stopping when necessary and hopefully tipping a little bit more each day to gradually create the same stretch in a more comfortable way. To gain her confidence first you could sitting and gentle bouncing on the ball and lying on it on her tummy first.

At least we've had a letter from Bristol very very short and brief compared to ones we've had in the past but at least I know what the game plan is now and it still looks like a 3 day therapy admission to bristol after the injections to ensure physically and emotionally kayleigh is moving forward which is a good thing as i've lost faith with down here at the moment.

You are a lot further forward than you were a few days ago ... well done for pushing.

Take care,

Helen xxx

petals

[The doctor today told me that while she's on Methatrexate she can't have penicilin[/quote]

Hi Michelle, that is news to me too, I have just today finished a course of Amoxicillin 500mg for a chest infection. I Take 15mg per week of MTX.

I have just read the patient info that came with the Amoxicillin and it states" please speak to your doctor if you are taking MTX as it can affect each others action."

Well my cough is a lot better but boy am I exhausted. I wonder if that's cos I was ill, or is it cos of penicillin mixed with MTX.

My GP prescribed it without a socond thought. Now I just don't know

Petals