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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

been to neuro still not sure !

17 replies

trace2 · 18/05/2009 14:42

they think she as a rare neurological disorder but dont know how to treat or stop. so we having a second opinion.

OP posts:

anonandlikeit · 18/05/2009 16:37

Oh trace, have they been able to put a name to it?

bubblagirl · 18/05/2009 16:56

i really hope you can get some answers soon xx

Original poster

trace2 · 18/05/2009 18:05

anonandlikeit but i think they not sure, i asked about cp to and that may come later.

OP posts:

anonandlikeit · 18/05/2009 18:46

Have you asked for the 2nd opinion or are they because they are not sure?
Have they told you much about what it might be? If so does it sound like it could be?

feelingbetter · 18/05/2009 18:59

Trace,
Sorry you are not getting answers, but at least they are listening to you now . Will they bother to try and find out what it is do any further investigations? Not good enough to leave it at 'rare disorder we don't know what to do about'. I am glad you are getting a second opinion.
Hope you are all well xx

Original poster

trace2 · 18/05/2009 19:11

yes we having a second opinion, they say its rare because of some of the movements she does we have videos and our local peads think its seizures, they have seen what she does. we have a list of all her problems, symptoms i just have a feeling its not the right answer, and iv told him so

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Original poster

trace2 · 18/05/2009 19:13

no not really told us what it is yet we still have to catch on eeg when in one( buts its an hour away to get there) i think they dont know tbh

OP posts:

PipinJo · 18/05/2009 19:23

This reply has been deleted

Message withdrawn at poster's request.

Original poster

trace2 · 18/05/2009 19:41

the second opinion is just a name i got in an other part of yorkshire , yes we have rang 999 will only take us to our local hospital which happened last week, then sheas to be checked at a&e to move on to childrens hospital, but last week was saying not safe to move her but we screamed at them saying its only way we will get an eeg.

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Original poster

trace2 · 18/05/2009 19:45

there point is its not damaging her as she loser the bit of speech she as after an episode but gains it back after a few weeks. but aswe say for upto 17 hours she dont eat drink, smile nothing losers weight which she not got to lose, she a feeding tube but carnt give it her in a episode as shes spasms

OP posts:

TotalChaos · 18/05/2009 20:34

sorry you and DD aren't getting better help. hope the second opinion is helpful.

anonandlikeit · 18/05/2009 20:56

I don't know how they can judge if its damaging her, if she is loosing the speech & then taking a while to regain it isn't that further delaying any progress.
I agree with feelingbetter, leaving you with no dx & no plan & just rare disorder is no help.

Can anyone on here recommend a tried & tested neuro thta you can ring & ask to see.
If your dd is baffling your local neuro they may be keen to take her on iykwim.

Original poster

trace2 · 19/05/2009 10:18

anonandlikeit i agree we are in a mess wondering what next! i would travel anywhere to get answers even pay to see the best,

and we to have said its damaging when she losers her speech but he says because she gets it back its not

OP posts:

othermother · 19/05/2009 10:21

Sorry you havn't been getting the help you need. It sounds very worrying for you x

FioFio · 19/05/2009 13:36

This reply has been deleted

Message withdrawn

Original poster

trace2 · 19/05/2009 14:34

hi fio the eeg as to be done when in a big episoes its getting her there at the right time! so far not managed it the one last week we could have got her there but our local hospital said she was not fit to leave ( so how the hell are we going to get one is our point)

OP posts:

fatzak · 19/05/2009 15:47

Trace - once you get under the care of the neuro at LGI (let's hope they get on with it quickly!)I would think that you will get access to the childrens neuro-science ward. That's what happened when W went into status - we rang the ward and they told us to go straight to them and they got an oncall EEG team there literally within 5 minutes of us arriving so they could see what was going on. I keep saying it, but they were fantastic there and I really hope that they can answer some questions for you.

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