This is exactly what happened to my own daughter. She has since recovered some vision, but cannot walk. At 20 years old she became permanently brain damaged because she had WLS. She's not the only one. It's happening more and more. My daughter lived, but she's not living. It is an absolute tragedy that could be avoided if doctors would do their damn jobs and inform themselves about this horrible condition.
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*my daughter is Meg, so this is not her story. This is from the Wernick's group.
Please feel free to share.
My daughter Laura's story.
Disclaimers: I am not a doctor. I received permission from Laura to share her story.
This is written in the hope to keep others from experiencing what Laura and others have unnecessarily. And possibly what she may experience in her future. This is to serve to bring awareness and warning to a rare condition.
In May of this year Laura had weight-loss surgery. She had the gastric sleeve procedure performed. She developed an infection, which is being treated, but I believe the infection is secondary and did not cause her rare condition. Shortly after the surgery she became nauseous and remained nauseous for months. I think about two weeks after the surgery she started vomiting daily. She would go to her primary care physician and also to her bariatric surgeon and no one could give her answers as to why she was nauseous and throwing up daily or offer any suggestions. She was hospitalized in late July by her bariatric surgeon as he could tell that her body was in distress during a visit. Two weeks prior to that she could not hold down any food or liquid, she threw up everything she tried to consume, which wasn't much to begin with. She was in the first hospital for two days. One Dr. inferred that it was in her head that she wasn't feeling any better. They could not determine what was the cause of the inability to hold down food, there were issues that they could not identify as to what the cause was, such as spiking blood pressure level. She was then transferred to a second hospital because the first hospital did not have the equipment nor the personnel on staff to do the procedure they felt was necessary to identify what the issue was. She was transferred to that hospital and laid there for days worsening while trying different tests and no one could identify what was going on while her condition deteriorated. She entered that hospital with her mental capacities intact, she could move on her own but slowly, as she was weak from no nutrition for the two weeks prior to being in the hospital. The doctors were dumbfounded. Of course it got quite frustrating as we saw her get to the point where she could not see clearly, her vision was blurry, she began speaking like she was talking in her sleep, she stopped swallowing, couldn't walk, never closed her eyes, literally couldn't sleep for days and then got to the point were she couldn't speak or communicate in any way. The first sign to me something was wrong was the vision issue, the medical staff equated it to the pain and nausea medication. Then I mentioned the dream state type confused speaking to the staff. They asked her a couple of questions and she answered them correctly, and went on their way. They didn't know what to do and what was going on. They did have her on an IV but we later found out it was the wrong thing to do in her condition since the iv contained sugar, remember that.
Someone had reached out to Laura's father with a phone number of a doctor who said he knew what was going on that it was serious and needed to be addressed immediately . We contacted them and they said that Laura needed to be immediately transferred to the hospital they were located in so that she could immediately start receiving treatment to avoid irreversible damage.
Turns out that Laura was experiencing a vitamin B1, thiamin deficiency and that resulted in a condition called Wernicke Encephalopathy, a rare condition that affects the brain. If not caught in time can cause irreversible brain damage or even death. At this point in Laura recovery we do not know what damage may never be recovered from or what abilities she may regain after a period of time.
Laura was persistent in her efforts to find out why she was vomiting every day. Searched out answers in online groups trying to identify the cause and went to multiple doctors. Even though this condition is rare it is generally found in individuals who are alcoholics, as alcohol (sugar) depletes B1. But women who throw up a lot during pregnancy, those who have anorexia, those who have had weight loss surgery also are affected due to malnutrition due to not being able to consume nutrition or their bodies are not able to absorb the nutrients that it needs. Vitamin B1, thiamine is vital to our brain function. But most of the general population does not know this nor do most doctors. If they did know they would known to administer vitamin B1 right away to avoid the damage that being B1 deficient causes.
As I said in the beginning of this, my hope is that this may prevent someone else from going through what Laura is currently going through and what others have gone through unnecessarily. If you are constantly throwing up, it is not normal. Please have your doctor administer B1 thiamine. Even if they're going to test for your B1 levels it takes days for the test results to come back. Taking vitamin B1 will not cause you problems as its water soluble. But not having it administered in a timely manner could be detrimental to your long term health and your life.
Laura is in her 4th week of hospitalization. She has a long way to go to recover. Sad part all this was avoidable had she known early enough to treat the B1 deficiency, if her doctors had only known. We're hoping for the best but yet preparing for some hard days to come. Keep Laura and her family lifted up and send out those positive energies for change out. Thank you to all those who helped this way.
Let's get the word out there. Let's not let others suffer needlessly. If you run across anybody that you care about that can't eat, can't absorb food properly or vomits a lot let them know about Wernicke Encephalopathy. If it goes too far it turns into Wernicke-Korsakoff syndrome which is even more serious as Korsakoff psychosis is permanent damage to areas of the brain involved with memory.
Feel free to share this over social media. Let's together prevent others from experiencing this horrible condition that some may never recover from.
Please search YouTube and Google for more information on Wernicke Encephalopathy to know more.
Search Google for an excellent article in pdf.
"Wernicke’s Encephalopathy:
Under Our Radar More Than it Should Be?"
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