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DS still in hospital

12 replies

fatzak · 07/01/2010 09:49

So we managed to get a bed in the end! Had to go via A&E and by 11.00pm they were still adamant that they didn't have a bed. Then I sobbed (my party trick now, can turn it on at the drop of a hat!) and they finally found a bed on ...cardiology!! At least it was a bed and we'd got in the bloody building!

EEG on Tues wasn't particularly helpful. Saw a neuro (not ours but tbh we prefer him and despite being in the hospital for the last 4 days ours hasn't even been to see DS) who decided to take DS of the lamotrigine which we think has been causing an increase in seizures. He's upped the Clobazam and that's all he's on now. A bit about the clobazam as we suspect it makes DS violent and irrational (know how he feels) and he's had a couple of outstanding meltdowns since he was in!

So we were due to come home yesterday afternoon, then he had a prolonged absence seizure that they had to use emergency meds to bring him out of He hasn't had an absence since he went into status last April so that's worrying.

I came home last night after 48 hours on the ward and DH now there with him. Have taken day off work to spend with DS2 (naughty mummy emotion) so we can have some fun in the snow as I haven't seen him for 2 days

Hopefully DH will call soon after ward round to let me know next plan!

OP posts:
claw3 · 07/01/2010 09:56

Im sorry to hear that, i do hope your ds is better soon and you get some rest.

Ds was recently in hospital and its so draining and such a worry. No experience of what you describe, but you have my sympathy.

Phoenix4725 · 07/01/2010 10:05

sorry to hear it hope he is home soon

sarah293 · 07/01/2010 10:12

This reply has been deleted

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PheasantPlucker · 07/01/2010 10:24

Hope your ds is home soon x

drloves8 · 07/01/2010 10:41

poor wee lad , i hope hes better soon.
disgusting that you had to wait for a bed for him , but at least you got one in the end.

lou031205 · 07/01/2010 11:46

well done you! Hope he is home soon

Lauree · 07/01/2010 12:01

hope he's out soon to join you in the snow x

fatzak · 07/01/2010 17:25

Not sure what brought on the absence Riven. When he went into non convulsive status last April they thought it was the Keppra that had done that. I suspect that his poor head is just all over the place from having wound down the tegretol last week, now the lamotrigine has been pulled and the clobazam tripelled!!

Have asked DH to bring up Ketogenic diet with consultant tomorrow. Oh and they are testing for a chromosome deficiency which can cause seizures like DS's - seems very rare but knowing our bloody luck

OP posts:
fatzak · 08/01/2010 20:11

We're out!

Not much else to do know but wait and see. He's only on clobazam now so just have to see how reacts to it.

Fingers crossed!

OP posts:
trace2 · 09/01/2010 09:08

glad hes home

Barmymummy · 09/01/2010 09:25

Great news he is home!! Hope he does well

feelingbetter · 09/01/2010 11:50

Glad you are home and fingers crossed here for you too!

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