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Original poster

Anyone else having a bad day?

349 replies

PamT · 19/06/2002 10:18

I woke up to hear DD yelling at 5am with an extremely stinky nappy - no going back to sleep there. So I went downstairs, switched the computer on and received 3 e-mails all containing the Klez virus, fortunately dealt with by Norton's Anti Virus before they did any damage but it took a bit of sorting out and checking. DD was in a foul mood and wouldn't eat breakfast so most of it went on the floor.

Yesterday wasn't much better, I was woken by the neighbour's car alarm going off at 5.30am and managed to get a stone chip in the car windscreen on the way to playgroup, not a bad one but right in the line of vision so the screen will have to be replaced and unfortunately isn't covered on the insurance.

Grrrrrrrrrrrr! Hope tomorrow is better.

OP posts:
SueDonim · 06/11/2002 06:19

So sorry to hear this news, Lou33 and I hope the waiting ends soon.

CAM · 06/11/2002 10:40

Dera Lou, very sorry to hear your news but have got my fingers crossed for you. Hoping that you get some better news soon. Keep posting,love Cam

sobernow · 06/11/2002 17:58

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sobernow · 06/11/2002 18:01

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lou33 · 06/11/2002 21:25

Sobernow, thanks for that, I have had a quick look, but will have to read it properly later. There are 2 main types of therapy it seems, Peto and Bobath. The physiotherapists my son has are trained in Bobath. I am no expert on this (though feeling like I rapidly going to become one!), so anyone feel free to correct me, but from what I can work out, and from the experience of the physios here, Peto and Bobath work in two different ways. Peto allegedly takes only a very specific type of child into their centres, as they know they can get the best results from them, so the success rate is not really that reliable I think. Also Peto believe that as long as a child is able to do the movement they set out to achieve, no matter how well they can do it, then that is regarded as a success, whereas Bobath concentrate on getting them to get the action then see how they can improve it to make the child's life easier. Bobath also incorporates their ideas into a whole way of life, so eventually carers will be carrying/holding/picking up/feeding/bathing etc the child in the correct way without even thinking about it, as it has become the norm. Bobath and Peto are not really made to coexist, although our physio said if we wanted to go the Peto way then she would try her hardest to work out a programme that complements it.
Now I've probably gone and opened a whole new argument without meaning to. Like I said I am by no means an expert, so if there is anyone who can shed light on what I've just said feel free, and sorry if I have said anything anyone disagrees with!

robinw · 06/11/2002 23:44

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GRMUM · 07/11/2002 08:59

lou33 glad to hear that your son is getting physio.I hear so many stories these days of delayed referrals,limited treatment etc it is quite worrying.I too am Bobath trained and would agree with everything your physio. says.I would especially encourage you and all family and friends who are involved with your ds to learn and use the handling and positioning that we use because its the continuous daily handling that can help so much rather than the 1 or 2 hours specific treatment he gets every week.Not that that isn't necessary but consistancy of handling makes a huge difference.Its one of the reasons why they get good results at the Peto Insitute - all personnel there use the same approach to the children on a 24 hour per day basis whilst the child is an in-patient.The other reason why they get good results is (i believe) that they are very selective about which children they accept on their programmes.Only mild cases without multiple problems.
Good luck with everything GRMUM X

lou33 · 07/11/2002 11:42

Grmum, you are not my son's physio by any chance are you?! From the brief glimpses I have had I think the Bobath technique will suit him better, and we feel very comfortable with his physio. We only moved here in september and the difference in services is amazing. We have gone from a 35 min session every month with different physios, to weekly physio with the same person, including home visits, an hour long, and weekly hydrotherapy. We had no special equipment supplied in our rpevious home, but here we already have an adapted highchair, a seat to enable him to sit up and play, and we are waiting an assessment to sort him out a bath seat. The NHS is definitly a postcode lottery.

RobinW, thank you for taking time to give me the website you mentioned,when you have so much on your plate at the moment.I will go have a look when ds stops being ill all over me! He has an ear and throat infection and has just started vomiting so time on the pc is very limited today!

GRMUM · 07/11/2002 13:37

Not unless you live in Athens lou33 - where incidentally we are having the most dreadful weather -storms, flooding and hail stones like mandarins!!!

I am so glad to hear that you feel comfortable with your physio.That would be the greatest compliment that parents could give me.Hopefully you will all build up a close and caring relationship and tackle whatever comes at you altogether.Sometimes health professionals can be incredibly distant and overbearing as I keep reading about on various threads here on mumsnet.I think its partly to do with the high qualifications needed these days to train for these jobs the human aspect gets left behind.When I went for my interview to get into physio.college they were most interested in personality and looking at your hands (for massage I think !!!)Academically you only needed one Alevel pass.(1975)

robinw · 07/11/2002 22:11

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lou33 · 08/11/2002 14:31

He's much better today Robinw, eating too so I think the worst is over. I may consider being referred to GOSH at a later date, but at the moment I am happy with the consultant I have, he looked after my oldest for 8 years with her hydrocephalus, and he also has a special interest in cp and the like. My oldest was written off too, told us not to bother with her because she wouldn't amount to much, but she has , and in fact has a pretty high iq. Before we moved she had a scholarship at the only private school in the area, and competition is tough for a place, so I know the what you mean, the last thing we will do is give up on him. I don't have a social worker because right now I don't feel I need one. My health visitor here is amazing, a fountain of information and plenty of support, which is an eyeopener coming from a town where I had no hv for 6 years. My son is being put on the local disability register at the moment, so you get a big fat file full of useful info in it, and combined with the hv, physio and the doctors I think I should be able to find out anything that isn't in there.

I'm so glad to read your mum has improved, although I suspect for you it is another roller coaster ride and you are waiting to see how it ends. My thoughts are with you and your family, hoping you are able to stay strong.

trudles · 11/11/2002 21:31

what a bitch of a week ive just had started with my shower exploding (no nasty electrocution thank god)so im waiting for that to be replaced which should have been today but to make matters worse our boiler packed up on thursday which is a disaster as dd needs daily baths for her eczema and as the boiler isitalian thefore part had to come from italy eta 1 week If they sell boilers in this country why dont they store sodding the parts too.any way today was meant to be shower replacement day at least i'll have some hot water woke up feeling like c**p needed to go doctors so rung shower people to find out when they would be here and they then said it wouldnt be til wednesday so after having a sobbing session as i also felt quite ill (as its bad enough being ill worse with no heating or hot water) my doctor told me ive got tonsillitus.I went out and brought an extra fan heater and a rapid boil kettle so i could wash etc. but then sods law plumber turns up with part from italy tiny blue box costing 170 quid but at least im warm and dont have to keep going to mil for showers now.

lou33 · 11/11/2002 22:40

Argh Trudles! Why do these things happen when we feel least able to cope?!

robinw · 12/11/2002 22:03

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lou33 · 13/11/2002 10:51

That's a positive step in the right direction RobinW, glad to hear it. Please keep posting , and if I can help in any way......

robinw · 05/12/2002 07:03

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lou33 · 05/12/2002 12:40

Thanks for asking Robin, no the results still aren't back (or at least not to me) and to be honest I'm getting hacked off with it. I have emailed and called but this awful secretary just isn't replying. His physio is going well though, and he is now confident enough in hydro to let the phsyio be in the same part of the pool as him, although she is not allowed to touch him yet!

Have just spent the morning visiting a nursery for him to start in 2004, where they have special needs teachers and will work with the ot/pt if they want to do a visit. He will start at the attached toddler group in the new year I think, just to get him used to being there, before he starts nursery properly.

It's quite odd that I found your post to me, I was just searching for your thread to ask about your mum, how's she doing?

mieow · 05/12/2002 13:36

Hi Lou33, 2 of my children have CP and they thought that they may have HSP too but we just were unlucky that 2 of our children were affected with CP. Not all children with CP have white matter (brain damage) my cousin has no white matter but has Spastic Diplegia CP and she hasn't got any worse. My son intilly went backward and went from 6 months delayed to over a years delayed. He was just 3 but was functioning at a 23 month old level yet 6 months previous to this he was functioning at a 1 1/2 year old. He has slowly caught up but I would say he is functioning at a 3 3/4 year old level and he is 5 next week. I hope you get your answers soon. If you want to email me my addy is [email protected]

lou33 · 05/12/2002 14:15

Thanks for that mieow, I appreciate your offer. I know about the white matter not always being present, which is why it's not so clear cut with my son, because the first opinion was that there was no white matter to see. It's gone to gosh now for a second opinion but that was a long time ago. I am getting v frustrated by it all and my gp has no more info than i do. I will have to go and kick some doors down for answers i think!

mieow · 05/12/2002 14:22

Go kick some medical butt!!!!!!!!!!!!!!!!
Been there, done that!!!!
Maria

mieow · 05/12/2002 14:29

Do you have the phone for the neurologist at GOSH, if you need it let me know, I have the neurologial dept. no somewhere. Do you know what Dr the scan went to?? Was it it Dr Carr?? She is a very good doctor. My youngest daughters MRI was sent to her at GOSH (because of the other two having CP) and it took about 2 months to get the results from them (and that was only because DS had an appointment for his Botox injsections there) Keep on at them!!!!!

robinw · 05/12/2002 19:12

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lou33 · 05/12/2002 21:42

Sorry to hear things aren't going too well Robin.

The problem with the mri is that Gosh are only giving a second opinion, so it's really down to the original paediatrician who ordered it to send out the results, and i have never had too highly an opinion of her. And to add to the confusion she is no longer treating ds, so it will no doubt have to be sent to her, to be sent to the new doctor, to be left in a pile to be looked at, and then finally reported on to me and my gp.

There are other questions they could answer though, which is annoying me. This secretary is going to give me high blood pressure!

robinw · 06/12/2002 19:14

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lou33 · 06/12/2002 22:33

Been and done all that Robin, they don't seem to be having any luck either, in fact I got his hip x ray results before my gp did! On the good news side social services are coming on monday to give ds a bathing assessment, so he can finally have some seating to be washed, and we came home from physio today with a contraption to enable him to stand up and play. It looks like the thing hannibal lecter was tied up in when being transported in silence of the lambs, but he feels v proud being upright!