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Gadget
17th October 2005, 09:17 PM
Mixed feelings about her appointment. First we were sent to x-ray where a little girl started to play with Sami, this was fine at first but after a while Sami wanted leaving alone but this girl was having none of it. I tried the gently approach and asked her several times to just leave her now as she was getting fed up but she just ignored me. I was starting to think that i was going to have to say something to her mum when we got called. Sami who was already stressed took one look at the x-ray machine and remembered it from last time and screamed blue murder, she kicked and struggled and got very very distressed. The radiologists were lovely tho and took ages trying to calm her and were really quick when i finally got her pinned down.

We then headed back to the ward to see the consultant. We got to the waiting room, i poped to the loo and sami happily went off to investigate the (empty) toy box. no sooner had she looked in it we were called and shown to the tiniest room to wait for the consultant. Honestly my bathroom is bigger and it is quite small. sami was non too pleased at having to leave the toy box and was delighted to find that the room was crammed with exciting toys like suture cutters, dressing packs etc etc. We waited in there for 30 mins needless to say she was not in a good mood.

The consultant came, we saw a Mr Andrews who didn't start off well by starting off sounding like they weren't going to treat her as he said it was not really bad. I was just gearing up to object when he said they didn't want it to get worse so were going to cast her to protect her lungs. He mentioned that in rare cases this didn't always stop it and the patient had to have surgery but this was a long way off if so. He said that we would get another appointment to cast her in a few weeks and that she didn't need to go to sleep for it. I couldn't get her to stay still for an x-ray so how are they going to cast her??? She also has to go to the Childrens Hospital in Birmingham to have an MRI done and she will be put under for that. We are looking at a few months wait for that one.

He then got up and was half way out the door before he asked if i had any questions. EErrr yes i said and asked him how bad her curve was. Now this is the scientific part so concentrate.... It's about half way between not too bad and terrible he says. :-o :-o :-o What the hell does that mean????? Okkk i say so what is her curve, waffle waffle don't worry we will sort her out he says. So evasive answer on that one. As far as i know he didn't even take her x-rays out of the envelope to look at them. I then mentioned the pain she seems to be getting in one leg when she walks, i know that she doesn't say much but she can say that it hurts. I didn't find anything wrong with her hips he says so we will have to see the mri. I know that there is nothing wrong with her hips but i do know that her pelvis is on the slant and it makes one leg longer than the other but apparantly he didn't think anything of it, fair enough if it isn't that but then what is hurting her leg??
I give up at this point and he rushes off and doesn't even respond when Sammi says bye.

So i'm left confused and angry with a bit of relief that we are at last on the treatment route. We were told even less at this appointment than at the last. New Cross hadn't even passed on that we had changed G.P (old one retired) and for some reason the new one doesn't show up on the computer.
Ok rant over sorry folks, just had a stressful and frustrating day.

Gadgetxx

sins
17th October 2005, 09:37 PM
Wow, Aren't appointments so awkward with children?
It doesn't help when a consultant is under so much pressure that you get left with so many unanswered questions.
Still, the good news is that at least they're going to cast her! I assume he explained what casting was and what it involved??
One slight problem, if she won't stand still for an x ray, there's not a snowball's chance in hell that a small child will allow herself to be casted under traction.Plus it involves some amount of pushing and manipulation.....
Try not to worry about her leg and hip pain, the MRI will show up any problem areas.You might also ask them to check her hipjoints as well.
So first rule of thumb, learn to be a pushy parent! Do not allow yourself to be aptronised by anyone.Fight hard in your daughter's corner, because you're the best advocate for her.Anything at all we can do, we'll try to help.
Sins

gerbo
17th October 2005, 09:57 PM
mr andrews is a locum and is the one we haven't met yet, the other three we have, of which mr marks and mr spilsbury appear most patient friendly. Unfortunately you never know in advance who you get.

I kind of warned you to have your questions ready, but as you see, even if you have, doesn't mean you get clear answers. Not being able to give you an clear indication of the level of scoliosis sounds terrible to me.

Fortunately you have your mri coming following whichn you can ask further questions. You can also ask your gp whether they receive any letter with more specific info in it, or whether they can write and ask.

Also, at least they are doing the right kind of things with an mri planned and treatment by casting, which i believe is kind of the "gold standard", as long as your child gets the correct treatment you can put up with a bit of bad communication skills

still, i can understand how you feel

gerbo

Gadget
17th October 2005, 10:05 PM
Yes I thought so too especially as i specificaly asked. Well next time i see a hospital i'm going to ask untill they tell me the answer and not a made up thing either. It depends on how long it is till we get her casting appointment as to whether i speak to the G.P about it and if we get any joy at the hospital. My G.P is notoriously slow when it comes to recieving results.
Gadget xx

andrea
17th October 2005, 10:17 PM
Wow, I'm actually really angry on your behalf. I know what appts with children are like, and this is not what you want. Firstly, I don't think they will be able to cast her without a GA. We've been told that Erin will always have a light GA in order to be cast. Without going into details, they will put her on a traction table to extend her spine before aligning it in the best possible position and then plastering her in that position. It's stressful for a young child and shouldn't be done while they are awake (however, Toni will tell you she was never put under for a casting, so what I have been told contradicts that).

I was led to believe that the MRI comes before the casting, yet what you have said means you will have it the other way round, which seems a little odd. You might be waiting months for an MRI by the sound of it.

What I'm about to say may be a bit controversial, but can you afford to pay for a private consultation? The reason I ask is that when we had our appointment, the consultant wanted Erin in a cast within 2 weeks. He wouldn't even let us go on holiday, which had been planned for months. She had an MRI and cast on the same day, and this was about 2 weeks from her initial consultation. It worries me that they don't seem too concerned about the situation. Perhaps there's nothing to be concerned about (I hope), but if casting will help her, then they should get her into a cast as soon as possible. My intention is not to worry you, but to get treatment in progress as soon as you can. Erin's case was severe, and I hope Sami's is not.

Unfortunately the NHS can be slow when it comes to getting appointments. They can be very very good when it matters though too.

If you have any questions PM me.
Take care
Andrea
xx

Gadget
17th October 2005, 10:46 PM
I'm getting quite concerned about her being awake for casting now. I'm dreading the whole thing as i feel it is going to be extremley traumatic for her. Will her cast need to be removed for the mri? and does anyone know whether she will get it back on before going home or will it be another trip to the other hospital.

Andrea unfortunately we are on incapacity benefit for my husband so we can't afford to go private. We are also due to go away in 2 weeks time and it is for a wedding so i really hope that her appointment doesn't come for while we are away.

Thanks for the information as no he didn't go into any details with us grrrr.
Gadget xx

andrea
17th October 2005, 11:00 PM
I really don't know whether the cast will need to be removed for the MRI. Hopefully someone else will be able to answer that one. Because there's no metal in it, I don't imagine it would need to be taken off, but I don't know if they would need to see the spine in a "natural" state, ie without the cast. If they do take it off, they should be able to put it back on while she is under a GA. Erin has had hers taken off and put back on before, but I guess it depends on the consultant.

I share your frustration. :squeeze:

Andrea

sins
17th October 2005, 11:02 PM
I don't think there's any need to panic just yet Gadget!
Just call down to your GP! Ask him to clarify with the hospital what exactly is entailed in the casting and if they have casted infants of her age before.
The cast will have to be removed for the MRI scan if she's having a light anaesthetic.
I suspect her case will be reviewed by the consultants and she'll be allocated a suitable date for MRI before casting can commence.
Sins

Sealy
18th October 2005, 12:01 AM
When Deirdre had her MRI, she was already in a cast and they didn't remove it for the procedure.

jfkimberly
19th October 2005, 01:35 AM
My mother informs me that I was awake for casting. I think I have a memory of my last casting, though I would have been quite young so I can't be sure. I'm not traumatized by it now, but if I were a parent of a young scoliosis patient being casted, I think I would prefer GA just to make it a smoother process.

Your appointment does sound frustrating. Did you at least get to see the xrays, even if you don't think the consultant looked at them? Sometimes just seeing the picture is so much more meaningful than hearing a number.

Gadget
19th October 2005, 08:57 PM
No i didn't really get the chance to see them. I had a quick peek and saw her curve but didn't understand anything jotted on them. It looked huge to me but then i'm her mum and it would do lol. I'm positive that it is not as bad medically as it looks to me else we would have been casted that day lol.
Thanks for all of your replys. I'm a little reassured by it all. Poor Sami had nightmares on the night tho, she rarely has bad dreams.
Gadget xx

newgirl
19th October 2005, 11:38 PM
Hi Gadget,
Sorry for the late reply and really sorry that your appointment was not very satisfactory.
To answer your question re the cast and the MRI, it is very likely that Sami will only be sedated for the MRI and will not require an anaesthetic. If this is the case and she is in a cast there will be no reason for the cast to be removed. I am afraid I can't comment on the fact that she will be awake for the casting, Niamh is put under GA for her casts but there may be different procedures in different hospitals. Is there an othopaedic specialist nurse associated with the hospital that you can contact to answer your questions? We weer given the contact number of the plaster nurses in our hospital if we had any questions and I have rang them on a couple of occasions with silly questions, but they have alway been very helpful. Hope you can get all your questions answered soon,
Nicola

gerbo
20th October 2005, 08:11 PM
I forgot to tell this, when I was in the waiting room, I did pick up a leaflet re serial casting from there. Don't know whether you got that, but it does seem to encourage you if you have questions to contact the orthotist dealing with this directly Do not know where i've put the leaflet, but remember (99% sure) that his name is Patrick. Just an other avenue if you have burning questions

gerbo

Gadget
21st October 2005, 12:39 PM
No i didn't get any leaflets. It was all so quick and all of our waiting was done in the cupboard really so i didn't even see them. Not heard about her appointment yet you weatch it will come through wilst we are away the week after next. Thanks guys,
Gadget xx

gerbo
21st October 2005, 01:27 PM
why not ring the ward and ask whether they can put the leaflet in the post and any other info they might have?