B1 deficiency

[Katrina]

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This is what B1 deficiency looks like. The image on the left is my daughter's brain. All of the white you see is blood and swelling. This is why she went blind, had seizures, went into a coma, was put on life support, and left permanently disabled.

As you can see in the image on the right, that blood and swelling is gone. Her brain is almost normal in appearance again according to her neurologist. After they finally figured out the cause (because they damn sure weren't listening to me) and gave her massive doses of B1, her brain began to heal. We got her back, we got almost all of her back after a couple of months in ICU, ventilator, trach, feeding tube, etc. She still can't walk, she has a nasty nystagmus in both eyes, and she looks like she is suffering from Parkinsons.

All of this because doctors would not hear me when I told them over and over she had zero nutrition for over a month. It would have been such an easy fix, but they failed my kid. Please make sure if you suffer extreme vomiting after this surgery to get help, and do NOT take no for an answer. Demand B1! I only wish I knew then specifically what to demand.

[DesertGal]

I'm so sorry you have had to go through all of this with your daughter. If the doctors had only listened to what you were explaining to them. I'm glad they've finally gotten on the right track with her. Best wishes on her recovery.

[Tamera2]

That is awful Katrina, I'm so sorry. These kind of stories just make me so mad and now your daughter and your family will never be the same and all because of something that could have been prevented. I'm glad she's doing better and has such a caring mom. How old was she when this happened? How are you feeling? Are you doing any better with your nausea,vomiting & weightloss? how's your treatment going for pain? Hope this finds you doing better. I see your close to being under 100lbs

[bigdogluver]

Katrina, I hope your daughter's recovery is quick, painless, and event free. It's terrible what your daughter, family, and you had to go through. All the very best.

[Katrina]

Thanks, you guys. She's doing well. We had her check up with her neurologist yesterday in Birmingham, AL (4 hours from home). He was very pleased to see that she looked much better than she did when he last saw her in August. At that point she was well underweight, not eating, could barely stand with her walker anymore, and plain looked awful. Now she's eating, gained back to a respectable 114 pounds, and has life back in her face. She's still not walking great with her walker, and she most likely never will. It's been a year since she was released (April 2nd), so she's probably where she's going to be as far as recovery goes. It's very sad that a 21 year old girl has to face this, but it could be so so much worse. I have a hard time trying to get her to understand that and be thankful for what she does have. Depression is a huge obstacle we face. She was fiercely independent prior to becoming ill, so being dependent on me is very hard for her. She really misses driving her car most of all.

As for me, I'm hanging in there. Had my cervical epidural on Tuesday. It either hast kicked in yet or it isn't going to. The pain while driving to and from Birmingham yesterday was pretty brutal. It's been better today though, so I have hope. Weight is still low. Don't know what's going on there. Yesterday and today I understand, I haven't really been able to eat. I just tried to eat dinner, first thing I've tried all day, half of a potato skin and I felt sick. It's been an hour and I still feel sick to my stomach. I don't know what the deal is. I hope it works itself out.

Here's a selfie Meg took of us on the way home from her neurology visit yesterday. She looks great, doesn't she?
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[DesertGal]

I LOVE the picture of you two!

[Tamera2]

She's a beautiful girl and looks healthy. She's come along way from her brain bleed. Your daughters complications was triggered by weight loss surgery? Prior to her you almost died from some hereditary condition made worse by WLS? Did I read that correctly? You also mentioned probably having anorexia and your afraid to gain any weight and you don't plan to let anyone tell you to put weight on. You know you look unhealthy per your words. You need an anorexia program or at least a doctor. I read all your blogs this as been a slow steady decline. You need to get help for your daughter. She can't loose you because you won't get help. If you continue to starve yourself it may not end well. Multiple medical professionals on here tried to help you and you got defensive and said everyone on here is used to seeing only fat people not skinny people and to leave you alone. Even though you know you don't look well and have a problem. Urge you to get help now.

[Luna354]

I hope she continues to make progress. You've both been through hell and back. It's nice to see you both smiling in that picture.

[Christie13]

Thanks, you guys. She's doing well. We had her check up with her neurologist yesterday in Birmingham, AL (4 hours from home). He was very pleased to see that she looked much better than she did when he last saw her in August. At that point she was well underweight, not eating, could barely stand with her walker anymore, and plain looked awful. Now she's eating, gained back to a respectable 114 pounds, and has life back in her face. She's still not walking great with her walker, and she most likely never will. It's been a year since she was released (April 2nd), so she's probably where she's going to be as far as recovery goes. It's very sad that a 21 year old girl has to face this, but it could be so so much worse. I have a hard time trying to get her to understand that and be thankful for what she does have. Depression is a huge obstacle we face. She was fiercely independent prior to becoming ill, so being dependent on me is very hard for her. She really misses driving her car most of all.

As for me, I'm hanging in there. Had my cervical epidural on Tuesday. It either hast kicked in yet or it isn't going to. The pain while driving to and from Birmingham yesterday was pretty brutal. It's been better today though, so I have hope. Weight is still low. Don't know what's going on there. Yesterday and today I understand, I haven't really been able to eat. I just tried to eat dinner, first thing I've tried all day, half of a potato skin and I felt sick. It's been an hour and I still feel sick to my stomach. I don't know what the deal is. I hope it works itself out.

Here's a selfie Meg took of us on the way home from her neurology visit yesterday. She looks great, doesn't she?
2017-04-08 20.34.05.jpg

Love the picture!! She looks great and so happy!!

[Shirl]

Katrina, keeping your family in my heart always!

The photo of you two just made my heart grow! Thank you for sharing your challenges and showing us that through difficult situations there is always something to be grateful for!

Xoxoxo