Think you've had a bad week?

Re: Think you've had a bad week?

Arlo Guthrie — Wed, 25 Nov 2009 18:27:40 GMT

Hi Dalya

Thank you so much for that genuinely comforting post.

Yes, I know that childhood epilepsy can and often does improve of its own accord, but we seem to have been given a lot of worst case scenarios by doctors so far: risk of brain damage, learning disabilities etc.

So your experience (a month in hospital - wow - but ultimately weaned off the drugs and a complete recovery) is enormously reassuring to read. Thank you.

Re: Think you've had a bad week?

Dalya Livy — Wed, 25 Nov 2009 17:45:09 GMT

Hi Arlo,

Sorry to hear what you're going through with Emily.

I was a difficult epileptic to control when I was a kid (by my parents' reports!), and had to spend about a month in hospital when I was 6 in order for doctors to work out my medication regimen. Eventually I did really well and was weaned off meds completely by age 15. Have not had another seizure since - not that I know of, anyway! They even let me drive :)

I hope this is just a transient rough patch. Keep seeing doctors and asking questions and researching - the right combination of meds for your daughter must exist, and it is certainly possible that the epilepsy will improve of its own accord as she gets older.

All the best,

Dalya

Re: Think you've had a bad week?

George Cooper — Wed, 25 Nov 2009 09:04:24 GMT

Where things fall down is post-diagnosis / treatment patient support, which has been more or less non-existent in Wiltshire. Moral of the story seems to be live near Southampton hospital!

This is my experience, too. The initial "crisis management" is usually without a problem, but the thereafter leaves much to be desired. With Sally's pancreatic cancer the acute treatment and surgery was impeccable but afterwards she was virtually abandoned by the system. Fortunately there was a local complementary therapy (whatever one may think about that - I had reiki massage for goodness sake) centre that proved a supportive blessing in every way. Sure, chemo was administered and was again brilliant in the administration - but the ongoing "support' - mental, physical, spiritual - non-existant.

Arlo - hang in. Ask questions. be persistent, they're geared up to dealing with questions and second opinions. It is a bit sad, but much of it going forward is down to your tenacity.

George

Re: Think you've had a bad week?

Arlo Guthrie — Wed, 25 Nov 2009 08:44:37 GMT

[quote user="Mike Martin"]Its sounds pretty dreadful that there is not better management/control/diagnosis, or whatever for a child. [/quote]

I can't really fault the control / diagnosis. I really believe that everything that could be done is being done. Problem is that my daughter's epilepsy had thus far proven very mild AND very difficult to control.

Our experience of care in hospitals over the last 24 hours has been very good. Really amazing, committed nurses (though I wonder how much that is affected by the fact that the patient is a usually rather endearing 5 year old child, and not some cantankerous old man leaking bodily fluids).

I was amazed, though, that on arrival at Salisbury, we were told there were no beds there or at any nearby hospital. That meant we had to hang out in A&E for about eight hours, which isn't the end of the world, but I think it also made the Drs more likely to send us home regardless of what was best for the patient.

When I said that my daughter had had 4 fits in 24 hours, inc one status, and two doses of midazolam, the doctor was saying we should go home. When I then remembered (it was 4:00am and things were a bit of a blur) it had been 5 fits and three doses, he said she should stay in for observation. In my opinion, the difference is marginal, and she should have stayed either way.

I think it odd that ambulances cannot give an ETA to the calller, and I'm taking this up with the ambulance service, though I guess for most people: 'we'll be there as fast as we can' is sufficient.

Where things fall down is post-diagnosis / treatment patient support, which has been more or less non-existent in Wiltshire. Moral of the story seems to be live near Southampton hospital!

Re: Think you've had a bad week?

Hannah Wynne Richards — Tue, 24 Nov 2009 17:03:07 GMT

I can't agree more with Mike. The "commitment " of the NHS is appalling, so is their standard of ethics given the way they seem to have no hesitation in signing false certificates

Wynne

Re: Think you've had a bad week?

Mike Martin — Tue, 24 Nov 2009 16:22:46 GMT

[quote user="Arlo Guthrie"]40 minutes on mainly unlit roads[/quote]

Maybe we should suggest the RCVS takes over control of the Medics from the Medical Council and enforce our 30 minutes to an emergency policy?

Its sounds pretty dreadful that there is not better management/control/diagnosis, or whatever for a child. I hope everything gets sorted sooner rather than later. Did you get the Consultant's home/mobile number, so you can call him at 3am next time?

Re: Think you've had a bad week?

Arlo Guthrie — Tue, 24 Nov 2009 16:16:58 GMT

[quote user="Evelyn Barbour-Hill"] Try the vet, he lives over the surgery you know.[/quote]

You know what Evelyn, with the ambulance problem round here, I might very well follow your advice next time

Re: Think you've had a bad week?

Arlo Guthrie — Tue, 24 Nov 2009 16:15:52 GMT

Thanks Wynne.

Turns out last week was just the warm up.

5 seizures yesterday, the last of which was at 3:30am this morning and uncontrolled by usual drug. That meant we had to call an ambulance, which helpfully couldn't give us any idea of an expected ETA. Since an uncontrolled seizure can cause permanent damage after 30 minutes, that rendered the ambulance useless, and meant I had to drive her to hospital myself. 40 minutes on mainly unlit roads, and more than one corner I thought I might have overcooked a bit en-route. But we made it, and all's well now. Still, the whole thing was bloody frightening.

Now using a new cocktail of drugs, so fingers crossed regression to the mean starts here.

Re: Think you've had a bad week?

Hannah Wynne Richards — Tue, 24 Nov 2009 09:52:38 GMT

Arlo Best wishes to the entire family

Evelyn I bet you felt like saying "I know EXACTLY how the dog feels !!!!!"

Wynne

Re: Think you've had a bad week?

Gillian Mostyn — Mon, 23 Nov 2009 21:49:11 GMT

Re: Think you've had a bad week?

Evelyn Barbour-Hill — Mon, 23 Nov 2009 19:29:45 GMT

[quote user="Arlo Guthrie"]And there is noone to ring and ask on a Sunday.[/quote]

Try the vet, he lives over the surgery you know.

A lady phoned me at 01.15 to tell me the dog kept wanting to sleep.

Re: Think you've had a bad week?

Arlo Guthrie — Mon, 23 Nov 2009 10:43:40 GMT

Thanks everyone.

[quote user="Mike Martin"]Stick in there, this week's got to be better.[/quote]

I was certainly hoping so. We ended the week on a rather frightening note. When Emily woke on Sunday, she was really spaced out. We didn't know whether it was the drugs, seizure activity or what. And there is noone to ring and ask on a Sunday. Anyway, she improved over the course of the day, and although it was frightening, all seemed well by last night.

But we've kicked off Monday morning with two seizures already.

If by 'manage' you mean control the seizures, no, the French weren't any more successful. However, the support we had was far better. Over here, in Wiltshire, we're kind of on our own.

In some ways, it's lucky I'm a self-employed internet geek. Means I can keep any eye on the 'patient' (she's currently kipping on a futon at my feet).

Re: Think you've had a bad week?

Mike Martin — Mon, 23 Nov 2009 10:05:05 GMT

I thought I was reading an extract from the Exorcist movie for a moment. Sounds like a tough period. Stick in there, this week's got to be better. Did those French Docs manage the epilepsy any better than here?

Re: Think you've had a bad week?

Evelyn Barbour-Hill — Sat, 21 Nov 2009 15:48:13 GMT

Take some time off and do whatever you need to, Arlo.

We'll still be here.

Re: Think you've had a bad week?

George Cooper — Sat, 21 Nov 2009 13:18:03 GMT

Arlo, on a journey like this, the only thing, the ONLY thing you can do (apart from kicking the cat) is to cope and deal with it.

If you'll forgive the pun, it will bottom out as it always does, and there'll be a steady climb back to your normality.

Best wishes, George

Re: Think you've had a bad week?

Arlo Guthrie — Sat, 21 Nov 2009 08:49:06 GMT

[quote user="Niall Taylor"]regression to the mean has to kick in pretty soon! [/quote]

Laughed out loud. Good way of putting it. Thanks Niall.

Re: Think you've had a bad week?

Niall Taylor — Sat, 21 Nov 2009 08:28:21 GMT

[quote user="Arlo Guthrie"]

Thanks . I suppose the good think about a week like that is that next week has to be better.

[/quote]

Indeed, regression to the mean has to kick in pretty soon! You've had a rough time, keep those spirits up.

Cheers,

Niall

Re: Think you've had a bad week?

Arlo Guthrie — Sat, 21 Nov 2009 08:13:29 GMT

Thanks . I suppose the good think about a week like that is that next week has to be better.

Re: Think you've had a bad week?

Gillian Mostyn — Fri, 20 Nov 2009 22:12:18 GMT

Sounds like a rough week.

I really do hope things improve for you Arlo - and that your kiddies health improves. So worrying!

Re: Think you've had a bad week?

Stephen Courtney — Fri, 20 Nov 2009 21:40:12 GMT

OK you win.....

Re: Think you've had a bad week?

Hanna Bennett — Fri, 20 Nov 2009 21:17:56 GMT

*sympathy* makes my week look fantastic...