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The whiny thread

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Rita Hayworth
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Re: The whiny thread

Postby Rita Hayworth » March 28th, 2011, 9:09 pm

Same here ... Allison ... I have a friend who had a son in that condition - his son is doing fine and I understand the struggles that you have day in and day out. I will be thinking of you and daughter Libby.

Thanks for keeping us informed.

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charliechaplinfan
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Re: The whiny thread

Postby charliechaplinfan » March 29th, 2011, 3:47 am

Thank you everyone, you're all such kind friends. On Christmas Eve I would have been delighted with this news, we can deal with it and Libby, bless her has taken it completely in her stride.
Failure is unimportant. It takes courage to make a fool of yourself - Charlie Chaplin

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Ann Harding
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Re: The whiny thread

Postby Ann Harding » March 29th, 2011, 4:46 am

I just saw this. All my best wishes to Libby. I hope she can have a treatment to keep the problem at bay. Thinking of you.

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moira finnie
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Re: The whiny thread

Postby moira finnie » March 29th, 2011, 10:09 am

Sorry to be late on this, but I am hoping that now that the doctors know what the issue is for Libby, it can be managed successfully. Please know that my thoughts and prayers are with you.
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charliechaplinfan
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Re: The whiny thread

Postby charliechaplinfan » March 29th, 2011, 2:42 pm

Thank you, both of you. Friday is the day we find out more. I'll come back here when we know and let you all know how she's doing.

Next week I go to the ME clinic for my first appointment, I'm lucky to be seen so quickly and hope to gain some more information to dealing with the ailment as a family. Chris is coming along too, as it's for patient's and partners to discuss symptoms and how to deal with them. There's no fast cure and I'm not looking forward to going there. I guess I don't want to see people who are worse than me, I can cope with the level of illness I have but to see someone suffering more will frighten me into thinking the symptoms might get worse. How bad is that kind of thinking? I'm lucky I can get about, I just need to manage my time really well to make use of the energy when it's there and learn to sit down frequently and conserve energy.
Failure is unimportant. It takes courage to make a fool of yourself - Charlie Chaplin

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Birdy
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Re: The whiny thread

Postby Birdy » March 31st, 2011, 10:44 pm

Alison,
I feel for you, you have a lot on your plate at once, but I am so glad you have some answers about yourself and Libby. Keep us all posted and we'll keep you in our prayers.
Best wishes,
B

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Birdy
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Re: The whiny thread

Postby Birdy » March 31st, 2011, 10:46 pm

Between being busy and getting locked out of this site, I haven't been very consistent but wanted to shout out a hello to everyone. Luckily, Moira's been on hand to help me, and hasn't made fun of me once. Now THAT would be something to whine about! I hope all of you are seeing some climbing temps, spring is here but holding back in the mid-west.

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JackFavell
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Re: The whiny thread

Postby JackFavell » April 1st, 2011, 7:40 am

I am glad to see you posting again, Birdy. We've missed you!

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charliechaplinfan
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Re: The whiny thread

Postby charliechaplinfan » April 1st, 2011, 4:25 pm

Good to see you back Birdy.

We got the news back on Libby today, she's had three scans on her brain and two show abnormalities, too much activity in her left brain which has caused the fits she suffered last year. It's also linked to hormones, she's 8 and getting ready for puberty (surely no). We've been offered medication, if she'd have had other fits since I think they would have pressed us harder but she hasn't so the decision here is whether to medicate or not. Everytime I think of a for I find an against. We both feel that way. Libby is very chipper about her diagnosis, I think knowing what it is is a great relief to her.

It's been a really busy day and I'm absolutely exhausted, I think I'll have pay back for today. I'm glad for the diagnosis, I'd rather know and know it can be dealt with that have that uncertainty. Many thanks to all of you who supported me.
Failure is unimportant. It takes courage to make a fool of yourself - Charlie Chaplin

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Birdy
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Re: The whiny thread

Postby Birdy » April 1st, 2011, 4:34 pm

I'm sure you'll make the right decision.

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JackFavell
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Re: The whiny thread

Postby JackFavell » April 1st, 2011, 8:27 pm

I know you will too, Alison.

We have the same problem with Alice and her migraines. There is a preventive medication she can take, but we always hesitate to go that route, I hate the idea of medicating her at such a young age. They have told us too that it is puberty - but man, this is taking a long time! I keep thinking that she will be OK soon. Then another headache comes and I kick myself for not putting her on the meds... I hate to see her in pain that she doesn't have to have.

Today she had a headache and I quick gave her a piece of pickled ginger and some ibuprofen. She was on her way to a friend's house and then suddenly about a half hour later, she was fine... I don't know for sure if it worked, she's too stubborn to admit if it does because she doesn't like taking it. It's been helping me with mine quite a bit.

Anyway, long story short, I just brought it up because it's hard to know what to do, but I know you will do the right thing for Libby, Alison. You are such a good mom.

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charliechaplinfan
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Re: The whiny thread

Postby charliechaplinfan » April 2nd, 2011, 1:54 pm

Thanks Wendy.

It is hard to know what to do. At least we have 5 weeks to decide, 5 weeks of seeing how she is. I can see your point of view so well, the medicine will make her better but might bring on other problems and they are both so young. Yet if you don't medicate and they suffer, you beat yourself up about it. Do you and Andrew completely agree, Chris and I sit slightly to either side of what to do, he's against whereas I'm more willing to consider taking the medication as I feel the fits themselves frigthen her, make her disorientated and very unsure and knock her confidence. She hasn't had one since Xmas eve so it's not essential we do something straight away.

Heck, if only there were a way to treat me :roll: :lol:
Failure is unimportant. It takes courage to make a fool of yourself - Charlie Chaplin

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JackFavell
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Re: The whiny thread

Postby JackFavell » April 2nd, 2011, 5:59 pm

Yes, it's exactly the same for Andrew ad me - he is almost completely against, and I know how bad they feel, so I lean towards medicating. everyone says it is a great help, including the nurse practitioner at the doctor's office, whose children both suffer from headaches, and a woman Andrew works with, who also has a daughter with migraines. They almost have him convinced.

Maybe you will get some help from the clinic this week. I'll keep my fingers crossed.

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charliechaplinfan
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Re: The whiny thread

Postby charliechaplinfan » April 3rd, 2011, 3:03 pm

If only they gave out guide books when we have kids. There is no right answers. Our husbands sound very similar.
Failure is unimportant. It takes courage to make a fool of yourself - Charlie Chaplin

jdb1

Re: The whiny thread

Postby jdb1 » April 5th, 2011, 8:25 am

charliechaplinfan wrote:Next week I go to the ME clinic for my first appointment, I'm lucky to be seen so quickly and hope to gain some more information to dealing with the ailment as a family. Chris is coming along too, as it's for patient's and partners to discuss symptoms and how to deal with them. There's no fast cure and I'm not looking forward to going there. I guess I don't want to see people who are worse than me, I can cope with the level of illness I have but to see someone suffering more will frighten me into thinking the symptoms might get worse. How bad is that kind of thinking? I'm lucky I can get about, I just need to manage my time really well to make use of the energy when it's there and learn to sit down frequently and conserve energy.


My friend, every single word of every single sentence in the above points to just how lucky you are. Imagine an ME clinic here in the land of "if you're not working to earn money, or playing hard, or shopping, 24/7 you're a bad American." Imagine the general medical community recognizing, and trying to address ME. Imagine the people in your life trying to understand and to help you cope. Just imagine. [Sigh.]


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