re: Livvie (one more thing)

[Guest guest]

I forgot to mention recovery time for a person who's had their 3rd or 4th

de-tethering surgery -- especially with the other symptoms your daughter has,

can take up to 6 months or more -- hence the importance of PT. Cannot stress

ENOUGH how IMPORTANT this is and will be to your daughter's recovery. After my

third de-tethering I started PT after 6 weeks. I am still in PT, and have been

on and off since May 2007 when I had my 3rd neurosurgery.

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> I am so frustrated I don't know where to begin.  My daughter had her 4th

de-tethering surgery 6 weeks ago.  She is on so much medicine, and none of it

seems to be helping much.  After the first 2 surgeries she was fine, and I

realize that age has a lot to do with it, but this time there are a lot of

issues that we have never faced before.  Her inability to control her bladder,

the constant constipation, anxiety, inability to sleep and the list goes on.  I

am frustrated and exhausted, I can't imagine how she feels.  I never see a smile

anymore, I just don't know what to do. 

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> She is rude to me and doesn't seem to care that she hurts my feelings.  Has no

consideration for the fact that my husband and I have taken on the

responsibility of raising a 4 year old because she can't bring herself to do the

right thing, or that I have taken 2 months off from work to help her out.  Now

she's mad because I won't allow her boyfriend and a friend of his to spend the

night in my home.  When is enough, enough,  what does she want blood.

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> Honest, I want to help her, and I know she is going through a hard time right

now, but this is not easy on any of us.  We are not sleeping, I get up 2 or 3

times a night and find her asleep in the wheelchair, when I tell her to go to

bed she tells me she's not sleepy.  This has been going on for almost a week

now.  It's like she is afraid to go to bed.  I don't know what to do.  I am

having to find her another primary care physician, she pissed off the one she

had, going to get pills for her boyfriend.  I didn't know she was doing this

until I called to schedule her an appointment to have her meds looked after and

try to get some home health papers signed and the Dr. wouldn't see her.  She

says she doesn't know why, but I know that she has used her " issues " in the past

to get narcotics for him.  i tried to explain to her that it will hurt her in

the long run, the time will come when she needs them and no one will want to

give them.  But, what do

> I know I am just her mother.  After all, he, the boyfriend, knows it all. 

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> I hate to do it, but if her attitude doesn't change I am going to have to ask

her to leave.  I refuse put to my health, my marriage and the well being of her

child at risk when she gives me nothing but disrespect and attitude.

>

> Thanks for allowing me to vent a little.  Now to the reason for the post. 

What are some ways that some of you deal with the pain, anxiety and other things

that go along with TSC, and does anyone know of a list for caregivers that might

be helpful?

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> Livvie

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