Wrong diagnoses

[Catherine Neale]

Hi Faye, Many thanks for those kind words when Liam is with us tomorrow I shall show him these messages and I am sure it will be reassuring for him, he is really going thro it and the last few days he goes into a room to try and deal with it himself, luv him if I could take this thing from him I would. We have met Prof Goadsby on two occasions now and I do believe he will sort him out, but please sooner rather than later. He is only at GOSH once a month now so we have to wait
Thanks again Catherine

[Catherine Neale]

We are so relieved today Liams pains have finished today GREAT. He was due to be going to London in a week or so they were going to try him on a drug from America one that hadn't been used on children as yet, so there we are don't know what they will decide to do next. But he goes back to school on Monday what a relief for him.

[PeterM]

Good news Catherine - long may it continue. Is Liam to stay on the current medication?

All the best
Peter

[Catherine Neale]

Well my daughter tried to ring GOSH today with regard to whether we stop the medication or not , she has left a message but hasn't had a reply yet so we are rather much in the dark, should he stay on this med or not thats the question. Thanks for your message Peter. Catherine

[Debbie]

Great news indeed

Hope you have a lovely weekend Liam X Oh , and have a great day Monday at school

[Catherine Neale]

Hello to All, Just like to tell you that we are all very upset today Liam is in the shadowing state of the CH and is very down in the dumps, I suppose he is thinking of the next couple of weeks and what he has to cope with. His Mum has rang GOSH and they have told her to go back on the full dose of indomethesen and the melatoning at night, he cannot take his head off the pillow today cos of the dizziness. I hope they will try him on something else this time as we didn't feel they helped with the last CH. He is very worried because his school has gone back today and feels that everyone will be thinking that he doesn't like school but he is so eager to get back when he does come out of them, We do really feel for him and feel like crying ourselves, sorry about that. Catherine

[Val]

Oh flippin' heck, poor Liam. I do hope GOSH keep tabs on things this time, keep them informed if not!

And Catherine, I am waiting with baited breath to find out the arrangements for 21 May - Liam's lovely mum is organising a fundraiser for OUCH here in Wales. As soon as I have the details I can make an announcement on here and drum up the local troops to come along and support it.

Tell Liam I am thinking about him and got my fingers crossed this bout will soon be over.

Love

Val.

[Andrya]

Poor Liam, I can't begin to understand how he feels he is so young to deal with this horrible condition. I really hope he gets something that makes him pf soon thinking of him.

Andi x

[Catherine Neale]

Hi Val and Andrya, Thanks for your support and Andrya I'm showing my ignorance now but what is pf, sorry. Val its not Liams Mum that is organising this on 21 May, its his Aunty Debbie along with her friend who have the Blue Ball and we are really hoping for a good responce to it. Would like to get serviettes with the Ouch logo on them if possible and I would fund those. We are also going to have a rafle on the night so lets hope for a good night. With regard to Liam the headaches are back good and proper this morning, they are lasting about 20 to 25 mins this time and coming every hourish. GOSH have been in touch with Trudie, and Dr Prabhakhar (childrens neurologist) is liasing with Prof Goadsby they are thinking of trying Liam on Dihydroeogotamine infusion or indometacin chellenge can anyone tell us what these are please, however these need pharmaceutical approval here and this could take months to get. There is a clinic next thursday and if there is a cancellation he will be going up then other than that his next appointment is 13 May a long time to wait Ah. We have tough time ahead. Catherine X

[Val]

I can tell you what DHE infusions are, I have had dozens over the last five or six years. DHE is dihydro-ergotamine. As the name suggests it is a derivative of ergotamine - triptan drugs are derived from it too. DHE is a very strong vaso-constrictor and it is this property that helps CH sufferers. It is not available on prescription, but has to be given in hospital by means of a drip which is run for an hour or so three times a day. It used to give me a breathing space every few months. Given its toxic nature though, you cannot take this drug on a regular basis, hence at least a three month gap between courses of infusions.

I'm not sure about the indomethacin; all I do know is that that can be given by infusion too, instead of the tablets.

That's all I can tell you, hope it helps.

Val.

[Andrya]

Catherine

Sorry, pf is pain free.

Xx

[Liz]

Hang in there Catherine, Liam is in my thoughts and prayers, that something will work for him very soon!

[Catherine Neale]

Hi All
Was wondering if anyone can advise us on the fact that GOSH told us that the medication they are intending putting Liam on needs pharmaceutical approval and could take months, and recently I have read an article from The European Journal of Paediatric Nuerology stating that dihydroergotamine along with others drugs had been successful in eight children that had been identified with ECH. Does this mean that this might have to be approved for an individual. Oh and thanks to Liz for your thoughts. Catherine

[Catherine Neale]

This awful thing that my Grandson Liam has, is really giving everyone the run around not to mention the suffering he is going through. After 6 weeks, last Wednesday his headaches disappeared we all thought great he will have some peace now for a while,on Sunday he was feeling a bit iffy with tingling in the back of his neck, and now BLOODY HELL they are back and he is rolling about in absolute agony again, how cruel is that? He usually gets a few weeks when he can catch up and have a little enjoyment, why is the medical people leaving him to get on with it, I feel so mad and frustrated. By the way he stopped the oxygen cos it didn't help him. Hope and pray he will be ok to come with us for the the London 10K he will be dissappointed if not, Catherine

[Faye T]

Hello Catherine,

So sorry to hear that Liam is suffering so much....It's so very difficult and painful being in pain AND so very difficult and painful to watch your loved ones suffering pain...Have you tried phoning the helpline for some support/advice?

Really hope that Liam has some pain free time soon,

Best wishes to you all,

Faye