Howdy Hydrocephalus

Understanding my unique gyroscope

Stevens-Johnson Syndrome

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Stevens-Johnson Syndrome or SJS for short is a rare skin condition that affects the skin. It causes skin to turn red or purple and peel away from the body. It also affects the mucus membraines or moist skin in mouth, nose, eyes includiing other body parts. SJS can be caused by viral infections, some cancers, geneitics and between 100-200 different types of medicine. Wikipedia indicates that there are anywhere between “2.6 to 6.1 cases per million people per year. In United States there are about 300new diagnoses per year”.

SJS can quickly become worse and become toxic epidermal necrolysis or TEN. The amount of body surface and severity is a way to classify between the two disorders. Where 3-10% of coverge of blisters of lesions on body is classified as SJS. 11-30% is considered SJS/TENS overlap and more than 10% is considered TENS. The mortality rate goes up exponentially too with more body covereage.

This is my story with SJS.
August 5, 2014. Go to family physician & begin to tirate up on lamotragine. keep lyrica the same

August 22 energy improved. clear headed. camping – feel weak. have drenching night sweats. shake it off as withdrawal from dosing down all the way off lyrica

august 26 up to maintenance dose of lamotratine. still have sweats

august 29-31 feel like have stomach flu. can’t eat. feel sick to stomach. face breaks out in rash.

sept 2 blisters on left hand and ring finger. rash has gotten worse, face, neck upper back. can’t wear wedding ring. left lymph node in neck bulging and very sore.

sept 4th go to walk in rash on arms & legs & stomach. get urine and blood tests. doc says most likely mono but extreme they may need to do biopsy on lymph node no energy. My right side started sagging more and drool would just come down my face.

sept 5th. never had cold sore and only small canker sores. mouth big blisters inside. lips and neck and face begin to swell. barely can walk. skin turned red. Even softest cloth are burning painful. No tags, light weight cotton tank top (no bra) & yoga shorts.

sept 6th morning bottom and upper lips fused together and completely bloody & raw. diffuse with warm water. mouth is covered in white stuff (later dead skin). barely can open mouth. face and neck ballooned. Rub my arms and legs and my skin would peel off like a sun burn. Hot burning pain. Itchy. Eyes starting to get red & gloopy. Hair is falling out on my head. I can barely keep awake. chris comes home late from work & tells me to go to ER because it looks like I have been in a car accident. I have seen myself all day and am in denial. I phone health link they tell me to go to ER within 4 hours. I have trouble swallowing.

I go to Emerg around 8:00pm. Not busy but still 3.5 hours to be seen, two sprains where seen before me. Wait in the non-emergency cubicle and debate whether I need to just go home. I finally see a Doc who asks me questions, takes a look at my meds & then leaves for 5 minutes and comes back to then say he is admitting me for SJS. by 12:30 i have a bed in the ER and I start prednisone & bennadryl. At 3:45am a room opens up and I am taken upstairs.

The next day the doctor who is my on floor physician was the one who saw me at walk in. He asks me tons of questions to what seems like to deny the ER diagnosis because he didn’t catch it. Did I eat anything, wash with anything new. Exposed to stuff. The questions were ridiculous. He asks me if I left a tampon in and if I have toxic shock. i said no. He then goes can you be sure. So all humilty left at the door, we do a vag exam there. No nothing left. I am not feeling confident with this Doc as he left me in extreme pain and it waned even further when Chris talked with him.

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I am so grateful for the ER doc and catching it. He is my hero! He took his time, listened to me, looked at all the visual symptoms and did some quick research. The information that the nurses gave me was really scary and the mortality from SJS goes up quickly. I know that I was a totally anomoly in the ward. So many of the nurses had said that they had never seen a patient with SJS. When I had a big flare up, I was scared they didn’t have a handle on this and I was going to die.

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Stayed in Hospital 6 days. On IV continuously for all but a test 8 hours where I flared up big time so they put me back on IV. I was given IV for fluids & nutrition, Benadryl to help with itching, prednisone to take away swelling and inflammation. I took pain meds & metonia by mouth. It would take me 5 minutes to try to use a straw to suck up 1 tsp of water. My mouth was raw & swollen. I could barely open my mouth & couldn’t stick out my tongue. At night I felt that I was choking on my own blood & didn’t sleep for long periods of time and on an angle. My eyes were itchy & sore and I was given drops so my eyes wouldn’t stick together and I wouldn’t become blind. I was given a grainy steroid cream for my lips that was like sandpaper but in gel format.

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My lips had to have muko gel on them constantly & they would peel off in chunks. I was given an antiseptic mouth rinse & foam tooth brush to basically put myself through pure torture four times a day or searing pain, blood, skin and pus.. Finally I was given another type of mouth rinse that numbs rather than makes you cry.

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I didn’t realize how badly my breathing was obstructed until day 5 when I could actually breath easily. My skin would peel off my forehead. People would look at you with this kind of scared to respond type of look. They were horrified but still couldn’t look away. When I had my brain surgery the kids spent time with me. This time in the hospital there were there only once. You could tell they were scared to look or come sit with me on the bed. I could barely talk. I would drool out my right side.

I could not eat, barely drink so I was on 5 days of a liquid only diet. Then a day of soft. I am a week out of hospital and ate pizza tonight.

When the swelling started to subside and pain pills working, I would joke with the nursing staff that now I was not in the hospital but in a very expensive spa on a detox diet, having plenty of rest & daily chemical peels. Nothing but the best for me.

I have been home from hospital a week and I am starting to get energy & eat. I am still having small flares inside & outside mouth and chest. I still get the heebie geebies when I think of everything but a freak thing like this will not get me down.

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