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My brother has cystinosis it is very rare cystine disease…

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my brother has cystinosis it...
my brother has cystinosis it is very rare cystine disease that affects organs and muscles. he is 40 years old I have 2 older brothers who have already died from disease one died at 2 yrs old other at 30. this past week we have experienced mental things such as memory loss, found him with a candle with ice thought it was a popsicle. he is on alot of pain meds for a chronic back problem I have been trying to find out if mental is disease or meds he takes vicodin, elavil, soma, valium that I know of possibly others. He just got a feeding tube due to not being able to swallow he has been home for almost 2 weeks and is not using the tube or supplements hospital gave him, he attempts to eat regular food but ends up choking. I had him in local ER 2 nights ago they did not run any test they told us there is nothing they can do for him. he has been past out all day possibly since last night we have tried waking him he doesnt respond. he has kidney transplant about 30 yrs ago
Submitted: 8 years ago.Category: Medical
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Answered in 2 hours by:
6/20/2010
Doctor: Louise Sivak, M.D., Doctor replied 8 years ago
Louise Sivak, M.D.
Category: Medical
Satisfied Customers: 3,499
Experience: Pediatrician, Board-certified in Hematology/Oncology
Verified

Hello,

I am SO sorry for your situation.

Your brother's primary physician should be "taking charge" here with your and other family members' inputs.

Does the hospital to which he went have what is called an "Ombudsman" (most do)?

Also call back to your brother's doctor ; s/he MUST take responsibility.

Does your brother have a Living Will stating what he wants done / not done if and when he gets very sick? You must ascertain that.

Where and how is your brother now?

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Customer reply replied 8 years ago
we ended up calling 911 they loaded him in ambulance and before they could leave he went into caridac arrest they had to do cpr he was put on ventillator. hospital checked for overdose they told us they expected to find high dose of tylenol from the vicodin but there was not large amount of any meds. today a nurse from hospital he was transferred to tells me he had alcohol level of 3.6 mind you he weighs 100.lbs has no muscle or body fat and is about 5'3" he did not smell of alcohol nor did we find signs of any at the house he had been out for atleast 5 hours that we know of possibly more like 10-12hrs I am wondering if anything else could have gave false reading of alcohol such as diabetes blood sugar problems? I have asked them to check his blood sugar they tell me it is not a concern I tried to explain that few weeks ago they had to give him insulin and I found out that it is a condition caused by cystinosis and his feet have been swollen.
Doctor: Louise Sivak, M.D., Doctor replied 8 years ago

Hello,

I am sorry your brother is so sick.

Is he being cared for by a metabolic specialist?

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Customer reply replied 8 years ago
I am not sure I do not think so, but I will ask when I get there tonight. They are only treating him as a overdose patient. They had to put him back on life support yesterday he is unable to breathe on his own, his oxygen count in blood is to low and blood pressure dropped. They also did a rectal swab and he tested positive for VREVANOCMYCIN-RESISTANT ENTEROCOCCOUS. I printed some reasearch info about cystinosis to give to them hopefully they will look at it and understand little more. When he was in there 2 weeks ago for a month he had 3 doctors caring for him I do not know why they have not contacted them or had at least kidney specialist see him. I will post tomorrow what I find out tonight and in morning. I truely appreciate your time and info I look at closing this tomorrow night or Friday.
Doctor: Louise Sivak, M.D., Doctor replied 8 years ago

Hello,

Your brother should also be seen by an infectious disease doctor regarding the best treatment for his VRE, taking into consideration that his kidney function is so low.

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