[Info] Stevens-Johnson syndrome

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Meetz: I went over her head. I talked to her supervisor, who then talked to her. :) It was either that or let the hubby go off on her. :)

Ruth : I had just had a C-Section. :) She was 9 lbs. 9 oz, and I'm about average build. :)

KellyD: No..not crazy. Just didn't know how to express herself effectively in English. She was someone who spoke English as a second language. I didn't get too upset because English was not my first language either. My only reason for being worried was what if she said something similar to another mom? I understood that medically speaking, she was right. She just stated it at the wrong time and with the wrong words. Moms in the NICU tend to be women under alot of stress. :)

Ok...I'm done hijacking....back to the thread. :)
 
Ruth, why won't your husband take you to the hospitals that can help you? I am frustrated I can't help from where I am. I sure do hope you get the care you need and deserve!
love,
matchu big hugg!

man I really feel the need to shake some sense into someone!
 
Hi Matchu, thank you. I am going to ask my doctor for a MRI body scan. That will show if it is in remission or not. When I had it at the age of six, it was a fast moving Syndrome. It is not moving fast now. It might have gone back into remission.

Thank you for the big hug!! Ruth
 
Hi skillefer, that is fantastic. 9 lbs, WOW!! Congratulations.
 
Hi Phylis, my leg is in severe pain. I have asked my doctor for pain pills. Aspirin is not working. Pain is the later stage of SJS.. Today my skin is getting more wrinkled. SJS is usually faster moving. It sure was when I was 6 years old. A week ago, I was in pain and I had a fever and my skin turned a bright red and I could see underneath my skin. I was able to treat it with lotion, water and aspirin. The white patches are increasing now. It is becoming fast moving now.

My doctor told me that she did want to send me to an inpatient hospital, like UCSF or UCLA. That means she did ask my insurance company and they said no!! We cannot afford even a one day visit. We do not have the money for it.

It dawned on me, that they would pay for a MRI full body scan. I have an appointment to see her next week. I am going to request it. I am going to have a pelvis ultrasound, she said that should show it up. It does affect the mucous membranes. The cheapest test for it is the pelvis exam. I can see and feel more of my tendons on both arms. Yesterday, when I put lotion on my skin it would only stay on the top. It did not go into my skin. I can only keep hydrated and take electrolytes now. That might slow it down.

Otherwise, I am feeling fine. I have faced death before and it does not scare me. I have a positive and strong attitude. I hope you write an article about what is going on with me. I know you will. There is always the possibility that it is skin cancer.
 
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Dear Ruth,

I sincerely doubt it is skin cancer or else it would not be progressing so quickly. And I do think the pelvic exam is an acceptable idea because of the SJS's effect on mucous membranes.

According to the Mayo Clinic: Stevens-Johnson syndrome is a rare, serious disorder in which your skin and mucous membranes react severely to a medication or infection.

Currently there are no standard recommendations for treating Stevens-Johnson syndrome. Supportive care you're likely to receive while hospitalized includes:

Fluid replacement. Because skin loss can result in significant loss of fluid from your body, replacing fluids is an important part of treatment. You may receive fluids and nutrients through a tube placed through your nose and into your stomach (nasogastric tube).

Skin nursing. Cool, wet compresses will help soothe blisters while they heal. Your health care team may gently remove any dead skin, and then place a dressing with a topical anesthetic over the affected areas, if needed.

Medications. Medications commonly used in the treatment of Stevens-Johnson syndrome include:

Pain medication to reduce discomfort
Antihistamines to relieve itching
Antibiotics to control infection, when needed
Topical steroids to reduce skin inflammation

In addition, you may receive one of the following types of medications that are currently being studied in the treatment of Stevens-Johnson syndrome:

Intravenous corticosteroids. These drugs may lessen the severity of your symptoms and shorten your recovery time if started within a day or two of when symptoms first appear.

Immunoglobulin intravenous (IGIV). This medication contains antibodies that may help your immune system halt the process of Stevens-Johnson syndrome.

Skin grafting. If a large area of your body is affected, skin grafting — removing skin from one area of your body and attaching it to another — may be necessary to help you heal. This treatment is only rarely required.

If the underlying cause of Stevens-Johnson syndrome can be eliminated and the skin reaction stopped, your skin may begin to grow again within several days. In severe cases, full recovery may take several months.

I hope this helps...
 
Thank you Phylis, that is a great deal of help to me. When I was 6 years old, I remember the cool wet compresses to keep my skin wet.

My skin did grow again when I was 6 years old. This is a great deal of help. It encourages me. I have been thinking positive and I have a good attitude. I am thinking that with new ways of treating it, I will be all right.

Thank you for the information. I really appreciate it.
 
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