Cannabis & epilepsy trial - day 1

RE: Cannabis & epilepsy trial - day 1

Arlo Guthrie — Wed, 03 Nov 2021 11:51:49 GMT

Thanks guys and gals, bob lehner, Neil Wheadon, George Cooper, Clare Tapsfield-Wright, Dagmar Steele, Laura Kidd, Julian Earl and Joyce Whitehead for all your kind thoughts. Have to say, my hopes are limited. But I do think that this is showing more promise than anything else we've tried. And if it works, I'll find out how we can all buy shares in the company behind it!

RE: Cannabis & epilepsy trial - day 1

bob lehner — Wed, 03 Nov 2021 11:31:54 GMT

Adding my best wishes.

RE: Cannabis & epilepsy trial - day 1

Neil Wheadon — Tue, 02 Nov 2021 23:38:57 GMT

Yes, good luck, hoping for a miracle

Radio 4 reported today that only 3 licences have been given for cannabis treatment

Neil

RE: Cannabis & epilepsy trial - day 1

George Cooper — Tue, 02 Nov 2021 22:47:50 GMT

***HUGS, Buddy***

RE: Cannabis & epilepsy trial - day 1

Clare Tapsfield-Wright — Tue, 02 Nov 2021 22:20:41 GMT

Oh Arlo , I do hope there’s a further improvement. Never give up hope, easier said than done I know Thank you for updating us ,wishing the best possible for you and Emily and her mum and sister.

RE: Cannabis & epilepsy trial - day 1

Dagmar Steele — Tue, 02 Nov 2021 22:19:36 GMT

What can I say? As all of the others I am keeping my fingers crossed for you and your daughter. I really hope this works and there will be at least a silver lining!!!

RE: Cannabis & epilepsy trial - day 1

Laura Kidd — Tue, 02 Nov 2021 20:58:32 GMT

echo this. Fingers and toes crossed for you all

RE: Cannabis & epilepsy trial - day 1

Julian Earl — Tue, 02 Nov 2021 20:39:38 GMT

[quote userid="2100" url="~/001/nonclinical/f/off-duty-discussions/22443/cannabis-epilepsy-trial---day-1/233778#233778"]and I am once again daring to hope![/quote]

Difficult to know what to say except that I/\we we dearly hope you/she can get this problem sorted and controlled by whatever means necessary? It must be anextremely distressing ordeal for your family and presumably your daughter as well; if she is aware of the seizures at all that is??

You have my hopes and very best wishes Arlo and family!!

RE: Cannabis & epilepsy trial - day 1

Arlo Guthrie — Tue, 02 Nov 2021 20:38:10 GMT

Thanks Joyce. I was thinking to myself that IF this got the seizures and the ataxia under control, which are the two things which make caring for her so bloody relentless, it would be pretty life changing. Anyway, we shall see.

RE: Cannabis & epilepsy trial - day 1

Joyce Whitehead — Tue, 02 Nov 2021 20:34:17 GMT

Gosh my heart goes out to you all, but fingers firmly crossed in a very non scientific manner that this can help her, and therefore the rest of the family.

RE: Cannabis & epilepsy trial - day 1

Arlo Guthrie — Tue, 02 Nov 2021 20:15:41 GMT

[quote userid="2100" url="~/001/nonclinical/f/off-duty-discussions/22443/cannabis-epilepsy-trial---day-1/232924#232924"]

Just in case anyone is still subscribed to this, and interested in more developments in the field of epilepsy (because sure as eggs is eggs, it'll be coming to a dog near you soon) ...

Can't really remember where I left off, except that Cannabidiol (CBD) proved completely ineffective for the treatment of my daughter's Dravet's Syndrome and relentless seizures - along with about 13 other drugs).

Over the last couple of years, her quality of life has also declined significantly, she now spends about 70% bedbound with non-convulsive status epilepticus (SE), and she has become significantly more ataxic when out of bed. The only thing which seems to make a dent in the SE is valium, but only for a limited time, a few hours at best.

Yesterday, Emily became the first patient in the UK, I think, to take part in a phase one clinical trial for gene therapy in the treatment of Dravet's. Given by lumbar puncture, it targets the faulty SNC1A gene, and in rats anyway, has apparently reduced / stopped seizures. It is apparently very rare that there is a new phase one trial for epilepsy, so everyone was very excited, and her neurologist even attended the lumbar puncture (which I wouldn't have thought was especially exciting otherwise!).

My daughter is 17 now, and even if the electrical short circuit were fixed yesterday (which is unlikely), she has still lost the most important first 12 years of her life and the prognosis is that she will need lifelong care regardless. Still, fingers crossed, it could significantly improve her quality of life, and if this is successful, it will be quite a landmark moment in medical science.

In 4 weeks, if no problems, she has another lumbar puncture. Then I think it is just a question of monitoring for the months ahead.

Fingers crossed.

[/quote]

Well, here I am, sitting here in a flat in London whilst my daughter has her second lumbar puncture / gene therapy, and I am once again daring to hope!

In the 3/4 weeks prior to the first injection, she was in status epilepticus for something like 25 out of 30 days, and maybe had 7 tonic clonic seizures. In the same period after the injection, she had SE for maybe 2/3 days out of 30 and had maybe more like 30 tonic clonic.

Maybe first dose was affecting (controlling) the status, but was not a high enough dose to deal with the TCs. Today's dose was double the first one, so I wonder what the next 4 weeks will bring. I expect hopes will be dashed again, and anyway, so much damage has already been done. But you know. Maybe. Just maybe!

RE: Cannabis & epilepsy trial - day 1

Clare Tapsfield-Wright — Tue, 14 Sep 2021 17:24:03 GMT

Thank you so much Joyce. It’s good to give him a voice even if it’s from my imagination.

RE: Cannabis & epilepsy trial - day 1

Joyce Whitehead — Mon, 13 Sep 2021 20:39:28 GMT

Clare Tapsfield-Wright I love your Life of Guy, you have a real talent for sharing how Guy feels about life. It is so lovely to read, thank you.

RE: Cannabis & epilepsy trial - day 1

Julie Innes — Mon, 13 Sep 2021 11:15:47 GMT

I'm another one who hasn't been around as much recently- we all seem to be busier than ever, don't we? But I dip in whenever I get a lull, and just wanted to add in my best wishes for your daughter, Arlo. I really hope this new treatment can enhance her quality of life.

RE: Cannabis & epilepsy trial - day 1

Mark Hedberg — Mon, 13 Sep 2021 10:16:32 GMT

Haven't been around in ages, but sincere best wishes for a positive outcome for you and all the family. Fingers crossed, of course!

RE: Cannabis & epilepsy trial - day 1

Arlo Guthrie — Mon, 13 Sep 2021 09:47:32 GMT

[quote userid="3685" url="~/001/nonclinical/f/off-duty-discussions/22443/cannabis-epilepsy-trial---day-1/233017#233017"]I have a similar worry here (although not to the same extent as your situation)-the balance is so hard.[/quote]

I guess my view is that I hope my other daughter will want to just check up on her sister from time to time, but if she does, it has to be because she wants to, and not because we've made her feel she has to.

[quote userid="3685" url="~/001/nonclinical/f/off-duty-discussions/22443/cannabis-epilepsy-trial---day-1/233017#233017"]I remember your younger daughter singing on that video that you posted (maybe a year or so back)-amazing young lady.[/quote]

Thanks!

[quote userid="3685" url="~/001/nonclinical/f/off-duty-discussions/22443/cannabis-epilepsy-trial---day-1/233017#233017"]

Clare Tapsfield-Wright said:
Life of Guy on Facebook. It’s a sort of a lighthearted blog

What an excellent read!

[/quote]

Isn't it just, and inspirational Clare Tapsfield-Wright. What a lucky man he is to have a mum like you.

RE: Cannabis & epilepsy trial - day 1

Nicola Cole — Sat, 11 Sep 2021 22:51:22 GMT

[quote userid="2100" url="~/001/nonclinical/f/off-duty-discussions/22443/cannabis-epilepsy-trial---day-1/232978#232978"]yes, but the worry there is that my younger daughter's life ends up being defined by her sister's illness. [/quote]

I have a similar worry here (although not to the same extent as your situation)-the balance is so hard. I remember your younger daughter singing on that video that you posted (maybe a year or so back)-amazing young lady.

[quote userid="2490" url="~/001/nonclinical/f/off-duty-discussions/22443/cannabis-epilepsy-trial---day-1/232985#232985"]Life of Guy on Facebook. It’s a sort of a lighthearted blog[/quote]

What an excellent read!

RE: Cannabis & epilepsy trial - day 1

Arlo Guthrie — Sat, 11 Sep 2021 08:20:27 GMT

[quote userid="6550" url="~/001/nonclinical/f/off-duty-discussions/22443/cannabis-epilepsy-trial---day-1/232984#232984"]You really are hard on yourself.[/quote]

At the risk of Punch and Judy .... oh no I'm not! Doesn't feel that way, anyway.

[quote userid="2490" url="~/001/nonclinical/f/off-duty-discussions/22443/cannabis-epilepsy-trial---day-1/232985#232985"]I do think we need to remember however that we tend to read about and hear of the most hideous human behaviour towards disabled people like our children, and not the kindness and genuine good in so many people. [/quote]

You're right, reminds of an amazing book I just read, called Factfulness, which explains very powerfully how we see the world in an overly negative way. Well worth reading.

[quote userid="2490" url="~/001/nonclinical/f/off-duty-discussions/22443/cannabis-epilepsy-trial---day-1/232985#232985"] do look for Life of Guy on Facebook[/quote]

Ooh - I will.

[quote userid="2490" url="~/001/nonclinical/f/off-duty-discussions/22443/cannabis-epilepsy-trial---day-1/232985#232985"]so I’m not as gobby as I used to be on here. [/quote]

Well, I understand, but you're missed!

RE: Cannabis & epilepsy trial - day 1

George Cooper — Fri, 10 Sep 2021 18:42:55 GMT

And my goodness, Clare, you fulfil that niche admirably. I may not comment EVERY month (but certainly will when your psycho Moggy is involved) but I am avidly reading your posts whenever they surface.

You BOTH - Arlo & Clare - deal with issues about which I have no perception and can offer no pearls of quasi-wisdom, save for appreciating any inkling of a window into your lives, and to express 'support' from afar.

We all are fighting different battles, unknown to all others, deriving different outcomes on the way. BUT one thing is certainly FOR SURE - that the sharing of those struggles in this forum will deliver untold support. I speak from personal experience, as when my Sal died, the occasional email that popped up in my inbox, the periodic phone call or text, meant the world in terms of mental support.

RE: Cannabis & epilepsy trial - day 1

Clare Tapsfield-Wright — Fri, 10 Sep 2021 17:47:52 GMT

Arlo , I do understand your fears , I have similar fears myself for my son Guy. So vulnerable to abuse in this world.
I do think we need to remember however that we tend to read about and hear of the most hideous human behaviour towards disabled people like our children, and not the kindness and genuine good in so many people.
Like you I didn’t volunteer to be my sons full time carer and I have made what provision I can for when I’m not around but otherwise I do the best I can to give him a good life and stick my head in the sand about the future when I’m gone. That’s all we can do.
The fears are still there at three in the morning but we have to keep on hoping for the best for them and enjoy small pleasures and be willing to accept help from those who love us.
Sending you and your family my very best. I know Emily’s problems are formidable and none of us can really know what you go through.
if you want some light relief and to know why I’ve been quiet on here then do look for Life of Guy on Facebook. It’s a sort of a lighthearted blog I write as if it was Guy commenting on life during lockdown when all our support stopped and we had to start walking to keep him busy.
I try to keep in touch with all things vet , and thanks for this forum too, but he is my career now so I’m not as gobby as I used to be on here.

RE: Cannabis & epilepsy trial - day 1

Bob Russell — Fri, 10 Sep 2021 17:21:08 GMT

You really are hard on yourself. You have dealt with it with the responsibility of a good parent. As such you have not had a lot of options but I suspect people are right when they say such things.

Not everyone can cope and the next generation may be all too happy to be involved in ensuring Emily s well being. That is not really your decision.

I accept it is really tough and to a large degree you are forced to go with the flow.

RE: Cannabis & epilepsy trial - day 1

Arlo Guthrie — Fri, 10 Sep 2021 11:55:29 GMT

[quote userid="6550" url="~/001/nonclinical/f/off-duty-discussions/22443/cannabis-epilepsy-trial---day-1/232976#232976"]Nominate younger family members to monitor her welfare if they are available[/quote]

yes, but the worry there is that my younger daughter's life ends up being defined by her sister's illness.

[quote userid="6550" url="~/001/nonclinical/f/off-duty-discussions/22443/cannabis-epilepsy-trial---day-1/232976#232976"]From what I have seen you have altered your life completely to be there for Emily[/quote]

I'm not sure that's something we had any choice over!!! People commonly make very nice remarks to us, thing's like 'you're amazing the way you deal with it' - but really I don't feel we are at all. I think most people in our situation would do exactly the same.

RE: Cannabis & epilepsy trial - day 1

Bob Russell — Fri, 10 Sep 2021 11:25:01 GMT

Exactly the fear that parents of many disabled youngsters have. Nominate younger family members to monitor her welfare if they are available.

It is a genuine worry to have and of course much worse than for non-disabled children better able to look after themselves.

Nobody warns you before you have children just how much worrying you are letting yourself in for! Not sure any children would be born if we did know!!

From what I have seen you have altered your life completely to be there for Emily and should take comfort from that.

RE: Cannabis & epilepsy trial - day 1

Arlo Guthrie — Fri, 10 Sep 2021 08:46:31 GMT

[quote userid="6550" url="~/001/nonclinical/f/off-duty-discussions/22443/cannabis-epilepsy-trial---day-1/232950#232950"]You are being very hard on yourself to think she has lost 12 years of her life.[/quote]

Thanks Bob. Actually, I do think we have given her the very best 12 years she could possibly have had, and I don't beat myself up about lost time. I meant just that she has lost all those years of learning the basics of how to speak, how to behave, everything, and even if this was a 100% cure for the misfiring going on her brain (which is unlikely), she'd never be able to catch up.

I know parents always fear for their children, but I think it is a little different when you have such a vulnerable child. My fear for her after we've gone is that she will end up being spat on in a nursing home (and you can interchange the words 'spat on' with anything horrible. Permanently sedated. Deliberately hurt.)

bob lehner thank you!

RE: Cannabis & epilepsy trial - day 1

bob lehner — Thu, 09 Sep 2021 19:48:24 GMT

Joining with others in wishing you all the best.