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Old 05-17-2015, 12:10 AM   #31
sweetpeasmommy
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Default Re: Friend's dd was nearly medically kidnapped

For those who don't have fb, she is recovering. She has had a seizure cluster once that I know of but didn't need to be hospitalized. She has had a very hard time with drug withdrawal. She had toxic levels of one med and he result was hallucinations. The whole family is traumatized from the experience. They have been at home with all CPS charges dismissed as unfounded for over a week.

My own thoughts, but it would be very hard for me to know when to seek help when the "help" tried to take your child once. And traumatized the whole family. And caused more harm than good. The Drs at UCSF were amazing though. It is way too far of a drive (8 hours I think) if there is an urgent situation though. Many people local to her with seizure issues choose to drive to another hospital 40 min ( or miles?) away. One person that shared was a priest who after being called to support his parishioners and seeing the exact same thing from the same neuro dr, including the parents being interrogated by CPS to the point security had to accompany the mother whenever she was with the child, chose to bring his own child who has a seizure disorder to the farther away hospital. There are many such stories, but you can't get much more credibility than a priest who provides all his contact info to anyone who will listen.

They will fight for this to not happen to others. But they are so weary. They spent what is no doubt a ton of money on a patient advocate and lawyers just to get her released from the nightmare to a hospital that could and would help. Not that money was a concern when your child is at death's door. And mutual friends who saw her were saying it looked like imminent life or death. PTSD is expected IMO given what happened to them. So please pray even though she isn't critical. It will be a long recovery for all of them and an even longer fight to maybe prevent this from happening to others. If that is even possible.


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Old 05-17-2015, 05:27 AM   #32
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Default Re: Friend's dd was nearly medically kidnapped

IRT knowing when to seek help, IIUC, she was initially transferred to CHOC, not that they chose that as their initial stop, yes? It would be a concern of mine if I went to another hospital, they would want to transfer out for more specialized care & the family could find themselves in the same situation again. I wonder if it's possible to get a restraining order against a hospital or that doctor to ensure transfer to CHOC is never a consideration?

I cannot imagine the toll that trauma would take on a family.
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Old 05-17-2015, 11:07 AM   #33
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Default Re: Friend's dd was nearly medically kidnapped

I *think* that is correct that it wasn't their first stop, but they were turned away by the first hospital.

Double checking the facts many people choose CHLA instead which is 75 miles away. Those are good ideas.


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Old 05-17-2015, 12:29 PM   #34
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Default Re: Friend's dd was nearly medically kidnapped

Quote:
Originally Posted by sweetpeasmommy View Post
Double checking the facts many people choose CHLA instead which is 75 miles away. Those are good ideas.


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Actually, according to Google Maps, it's around 40 miles, which is usually about 45 - 60 minutes.



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Old 05-17-2015, 12:57 PM   #35
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Default Re: Friend's dd was nearly medically kidnapped

I have a friend whose daughter has a heart problem and drives to CHLA once a month sometimes. We are very close to the same place this family lives. It should take an hour or less to get there.
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Old 05-17-2015, 01:39 PM   #36
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Default Re: Friend's dd was nearly medically kidnapped

Facts are not my strong suit. Maybe he meant 75 miles round trip. I just know CA is huge, lol.


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Old 05-17-2015, 02:01 PM   #37
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Default Re: Friend's dd was nearly medically kidnapped

Quote:
Originally Posted by sweetpeasmommy View Post
Facts are not my strong suit. Maybe he meant 75 miles round trip. I just know CA is huge, lol.


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That works for me.

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Old 06-02-2015, 03:37 PM   #38
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Default Re: Friend's dd was nearly medically kidnapped

She's hospitalized at UCLA. They are being treated very well. Prayers for the seizures to stop and for the emotions this must bring up for them.
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Old 06-02-2015, 06:31 PM   #39
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Default Re: Friend's dd was nearly medically kidnapped

I'm sorry she's back in the hospital. Praying...
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Old 06-02-2015, 09:22 PM   #40
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Default Re: Friend's dd was nearly medically kidnapped

They are saying the recent increase is due to precocious puberty which is apparently a thing with Dravet kids. she's only 7.


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Old 06-02-2015, 10:28 PM   #41
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Old 06-05-2015, 07:29 AM   #42
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Default Re: Friend's dd was nearly medically kidnapped

How is she doing now?
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Old 06-05-2015, 10:35 AM   #43
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Default Re: Friend's dd was nearly medically kidnapped

Last update was 15 hrs ago. She was moved to PICU for versed drip, and later able to wean off and bridge the gap with another med. It said she was improving nicely. They've been treated well and learned so much at This hospital.


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Old 06-05-2015, 08:22 PM   #44
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Default Re: Friend's dd was nearly medically kidnapped

I have been praying for this family.
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Old 06-05-2015, 11:22 PM   #45
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Default Re: Friend's dd was nearly medically kidnapped

I am almost positive this is okay to share here as I have permission, it is a public page and I left out the kid pic.






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