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Hi from Dale

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from Dale, Mom to Katy, CVID, age 18

-- you ought to see an 18 year old with sinus behavior!!!

Only kidding -- NO ONE should see that!!!! But seriously, sometimes I think

we over protect our doctors from our kids. The doctor needs to hear this from

Sara!!! The doctors started really listening when I let Katy do the talking

and screaming and yelling at them. I told Katy she could tell the doctor

exactly what she was thinking and feeling and I started letting them work out

their relationship. You'll find that kids who are chronically ill need that

sense of power. If you don't think Sara is ready for that -- have her draw

pictures to share with her doctor that tell him/her how frustrated she is.

The doctors need to hear it. I also found that my doctor felt more " useful "

because she could at least listen to Katy's frustration even when she couldn't

solve the problems. Katy negotiated deals with her pediatrician -- I'll try

this -- I won't try this -- I'll do this but only when I decide I need it,

etc. It REALLY made a difference for Katy to feel that she had that control.

Now, we're talking age 11, not 4 -- but Sara's been dealing with this for a

long time. See what you can do to help her communicate her frustration. She

can dictate a letter for you to write, color a picture of where it hurts, draw

a picture to show how angry she is, etc.

Hope that helps.

In His service,

Dale

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