Re: Ann J.- DARLA: Digest Number 2745

[Guest guest]

I think you are right about her listening to him more than me. she

definitely appeared to be more interested in his thoughts than might during

the two appointments with him. It was a little frustrating in that I had to

fill in some gaps that were very important and felt like I was " intruding. "

I will definitely have him let her know if the prescription isn't working

enough or making him feel " off. "

Thanks for your info and advice.

Darla: mommy to: Asenath (4) Mito, CNS Vasculitis, strokes, migraines,

seizures, G-tube, hypotonicity, disautonomy,SID, dev. delays, asthma

Zipporrah (7 mon.) Mito, strokes, SID, G-tube, asthma, trach issues,

disautonomy, hypo & hypertonicity, migraines

>

>Reply-To: Mito

>To: Mito >

>Subject: Re: DARLA: Digest Number 2745

>Date: Wed, 4 Aug 2004 04:03:09 -0700

>

>Hi Darla:

>

>Regarding the amitryptilline (elavil), I took it for migraines and found it

>to be very helpful but too sedating. had to stop. On the other hand my 2

>boys have tried it and while it did not help - they were not sedated by it

>in the least.

>

>I think it is good to be willing to try it - for many people it does work.

>I would also encourage Luke to be very clear with the doctors about what he

>will tolerate as far as treatment side effects goes and what he will not.

>My 17 yr old was put on topamax for her migraines. It took them away but

>she said she felt like an idiot in school -just very loopy feeling and

>like she could not concentrate. So she took herself off of it.

>

>A year later her migraines became unbearable. Recently she went back to

>neuro and she was very adamant with him that she wanted to make the

>migraines go away but was unwilling to feel dopey /sleepy. He went through

>about 3 choices of meds with her and the side effects of each and together

>they decided on one she felt she could live with. He was very clear with

>her that if she experienced side effects , they would keep looking for

>something that she would feel to be acceptable.

>

>I think that her advocacy for herself, rather than my doing I for her, made

>him want to work with her on this . Its hard to ignore a teenager who is

>saying " I don't want to feel like this and will not take any medication

>that does make me feel badly " . I also think it was good for Brittany to

>see that she could take a little bit of control and that she did not have

>to just accept side effects that to her were unbearable.

>

>So if the Elavil does not work....and you continue working with this neuro

>that you seem less than fond of...she might respond to Luke telling her how

>he feels. Adolescents have a persistence that we can all learn from as you

>well know. So while neuro might not listen to you....they may be more

>willing to listen to Luke himself.

>

>Anne

>www.caringbridge.org/wi/zachsam