Thiamine (B1) deficiency

**Katrina** · 11-07-2017 05:52 PM

Many of you have seen this already, and know my kid's story. I want the new people to be aware of what can happen. Don't be scared, just be careful.

This is what happened to my daughter after her surgery. They didn't catch it in time. It's called Wernicke's Encephalopathy. It is caused by Thiamine deficiency. It is so very important that these doctors listen when we tell them about the relentless vomiting, but they just didnt listen to us, and my daughter paid a huge price. Please make sure you take your vitamins, and make sure that you get help if you can't keep them down.
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I know this is scary, but this is reality. This can happen, and did happen to my daughter. This surgery can be a wonderful thing, just be vigilant with your aftercare. Insist on B1 replacement if you've been vomiting too much.

Here is a Johns Hopkins video about it
https://youtu.be/-075utKZDZY

sraebaer · 11-07-2017 06:15 PM

So scary, and so sorry this happened. Is there a chance your daughter will improve over time?

**Katrina** · 11-07-2017 06:37 PM

It's been 21 months since she got sick. At this point she's improved all that she will. She is no longer blind, but does have severe vision impairment. Her trach is gone. She also does not need a feeding tube anymore. Unfortunately, it does not seem as though her walking will ever happen. She can get around short distances in the house with a walker, but it isn't very safe as her balance is terrible. She falls often because she's too stubborn to use her wheelchair. Overall, considering where she was, she made a remarkable recovery. Sadly, for a 21 year old, it isn't enough for her. The depression is the worst. I remind her how lucky we are to still have her every single day, but I understand how painful it must be to lose so much so young.

It was such an easy cure if only the doctors would have listened. That part makes me so angry I could physically hurt the doctor that told me my daughter was faking. Beyond that anger at that man, I am thankful every day she's alive.

This was at her neurology appointment on Friday. We have to drive 4 hours from home for those. She had a really good day. Those are rare and welcome.
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sraebaer · 11-07-2017 06:45 PM

Once again, I'm so sorry. Have you filed a lawsuit, considering she will need medical care for the rest of her life? It sure sounds like the doctors are to blame. I love her happy pictures!!

By telling her story, you are saving lives on this site. Now those with persistent vomiting will know what to ask their doctor!

**Christie13** · 11-07-2017 08:58 PM

I second the lawsuit question above. I also am thankful you share her story. Vitamins and minerals are so much more important for us sleevers than people realize. Big hugs to you both.

**Stacey03** · 11-08-2017 12:18 AM

So awful that the deficiency wasn’t considered. I hope she improves even more. And I hope you filed a lawsuit too. What an awful lot your family have been through.

**Dutchie** · 11-08-2017 06:43 AM

I can't imagine what it must be like to see your child like this.
Especially if someone is to blame for it.
What did that doctor say, when you confronted him?
I don't know much about lawsuits, but I sure hope that you will recieve some sort of satisfaction (if that is the correct word?).

**knp76** · 11-10-2017 01:12 PM

I'm sorry this happened. I agree with the others about the law suit. It is so frustrating when you have healthcare professionals that don't listen. If he had just heard you it could have prevented this. It makes me want to hurt him too. I hope she does have more improvement. My thoughts are with you both.