From Pediatrics to Young Adults..Who makes the call?

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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From Pediatrics to Young Adults..Who makes the call?

Postby sheila » Thu Mar 13, 2008 12:15 pm

I have been through 96 neuro-surgeries with my daughter who is now almost 19. We are preparing for the chiari surgery on 3-21-08. It is amazing how things changed once she became 18. The doctors began to look at her for questions, answers and decisions. This is very hard for me to deal with when sometimes I feel that she is putting herself at risk. One day the doctor came down hard on her after a decision she had made on "her own" delayed treatment that could of impacted the way she functions on a daily basis. As far as medication, it is a no win situation at times. How do you handle this? For so long I have taken care of her and now I have to back off and hope she makes healthy and safe decisions for her self. She and I have a great relationship until it comes to her health. I am frustrated and heart broken. I want her to take responsibilty for her health but how do you do it and keep them safe?
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Postby Janice » Thu Mar 13, 2008 12:28 pm

Hi Sheila,

I responded to your PM.

Take care and let me know if you have additional questions.
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Postby youngwife » Thu Mar 13, 2008 7:58 pm

Hi!
My daughter is only thirteen, but I can somewhat relate. There were times when I asked her how she felt about things, but if it had come down to a life or death situation, I would have made the call.

19 is a whole different story, though. :wink:

:?
Homeschooling mom to 6 wonderful blessings from the Lord. ~ "Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers." - Ephesians 4:29
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Postby LIZARD110366 » Sat Mar 15, 2008 5:37 pm

Hey, Sheila. :)

I'm sorry you're having to face this awkward situation. ((((((((((HUGS))))))))))). I am a lifelong hydrocephalus patient, 41 yo, and I was just your daughter's age when I went through this myself. I was away at school (at my insistence) and then came home on break when I had a breakthrough seizure and was put back on med. I knew it would take several weeks to "get my brain back," so I sought the advice of a neuro who quickly decided I was allergic to the med and talked me into going onto another med. I had several severe effects from the new med, and it took 4 neuros and nearly 3 years to switch back, but my parents admit today that they never would have known to make the deduction I did to get back on the "right" med and they thought it was some weird form of shunt failure or regression from hydro that no one knew to tell them to expect.

I was able to do this because I made a point of looking high and low for the info I needed, and if your daughter wants to take the reins and manage her own health care, it is absolutely imperative that she understand as much as possible about her condition(s) and how they affect--and can affect--her. Without that knowledge and asking the right questions, a decision she makes can be fatal.

Good luck!

LIZARD :)
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