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        Supporter's Corner >> Children and Cluster's >> Feeling helpless
        
(Message started by: JimmyM on Oct 4^th, 2005, 12:50pm)

Title: Feeling helpless
Post by JimmyM on Oct 4^th, 2005, 12:50pm

Hello I'm new to messageboards in general and so apologise for any lapses in etiquette. I have a 4 year old daughter (Saskia) who has been suffering with debilitating headaches for the last seven days.

The headaches have not occurred everyday and have gone from mild to leaving her screaming and nearly insensible. She has vomitted once but I think that may have been caused by the intensity of her screaming. Between attacks she's her normal self, perhaps even more chipper than normal.

Her eye swells and her nose runs. We've been in our hospital for the last 48 hours. A CT scan, eye exam and reflex test was clear and the doctors have sent us home with instructions to monitor the process.

I can't adequately describe how watching my little girl suffer like this makes me feel the emotions run from total despondancy to impotant rage.

Any words of help, advice (especially Paediatric Neurologist referals for the UK) or solidarity would be of enormous help to me at this time. I've never felt so exposed but I suppose that's what children do for you....level lots of playingfields and totally reliant on the well being of a little person can't look after themselves.

Title: Re: Feeling helpless
Post by nani on Oct 4^th, 2005, 1:25pm

Welcome Jimmy, and you don't know how much I wish that you didn't have to find us. :'(
That said, I'm so glad you did find us! There is another member here, from Nottingham, that is both a CH sufferer and a supporter to her 4 year old son. Initially, she had a tough time getting him the proper treatment, and had a very bad peds neuro. I'm sure she'll be along... but just in case... her screen name is LeLimey. Find her name in a thread and click on it. Then click on Send a personal message. Let her know how to contact you, and I'm sure she will.
Pain free wishes to your home, nani

Title: Re: Feeling helpless
Post by JimmyM on Oct 4^th, 2005, 2:58pm

Thanks nani,

Anything that lets me do something myself starts giving back some control.

kind regards

Jimmy

Title: Re: Feeling helpless
Post by LeLimey on Oct 4^th, 2005, 5:09pm

Jimmy check your IM's at the top of this board - instant messages. I've sent you my phone number and I want you to call ASAP or send me your number and I will call you.
I too have a four year old who was diagnosed with CH while he was three and I know just what you are going through and I want to talk to you about OUCH UK who can hopefully help you a referral to a paediatric neuro too.
I had a fight on with that one and they were brilliant and believe me, I will help you all the way if I have to come with you!
regards
Helen

Title: Re: Feeling helpless
Post by LeLimey on Oct 4^th, 2005, 5:25pm

Hello again Jimmy!
Right I've got those bits done so now I can post at leisure!
First and foremost, I'm so sorry to hear about Saskia, having Jasper who has just turned four and has been diagnosed with CH to deal with I know only too well what you are going through.
There are other conditions which mimic CH but are rarer and with a child especially you can't be too careful as the implications as they grow are enormous. The meds are very different too and what is effective for one won't help another.

How long do her attacks last?

What times of day have they occurred?

Have you got any pain relief for her or any meds at all?

Before I had any meds I used to rely on cooling Jasper as much as possible, taking him outside (but not into bright light), using ice packs to sooth etc.
Ask your doctor about prescribing O2 at a flow rate of 15LPM.. I'll talk more to you about that on the phone hopefully.
I've messaged you my phone numbers so please please please use them. Any time day or night is fine but the sooner the better.
lots of love to you and your family
Helen

Title: Re: Feeling helpless
Post by sassy_lady on Oct 5^th, 2005, 1:51pm

Hello Jimmy,
welcome & sorry you are here.. I don't know much about ch's with children, but I know how they can bring my husband down on his knees.. call Helen, she is a great woman!! also to the left of this board is tons of info that will help you understand what your little girl is going through..
& again I'm sorry she is hurting!!
PFDAN, Lots of Prayers, love, & vibes to you & yours!!
Lots of Love Jolene