Monday, August 6, 2012
Austin Update
August, 2012 and Austin has been good - few flare ups of mouth sores over the last few years, usually in February (cold/virus season). Austin just applied to a few colleges and his application essay was on SJS and how it has affected his life. Main message being that it wasn't a totally bad experience because it has helped shape him into who he is today.
Tuesday, February 23, 2010
SJS Revisted - Feb. 2010
For Austin's SJS history/timeline and FAQ about SJS - go to the Blog Archive on the right side of this page to 2009.
February 9, 2010 - 5 days short of a year (from the start of the last horrible episode)- and let me tell you, it's been on my mind and Austin called me from the clinic - his mouth "felt funny." Bottom lip looked a little swollen, inside of his mouth red with a few white blotches. Called Pediatrician, took him in, did rapid strep (negative) - she put him on steroids just in case. Austin had been sick the week before with flu like symptoms for a day - then was like a cold (coughing). Had taken him in to the dr. just in case that week - had put him on Z pak because it was starting to sound a little like bronchitis.
February 10, 2010 - Took Austin to Dr. Tamburro (dermatologist) for her opinion since pediatrician thought the SJS was returning. Dr Tamburro said, yes, the SJS was back. Put him on a higher dose of steroids, weaning him down over 9 days. Said she had seen another girl from PA with reoccurring SJS - the only thing that seems to keep it in check is giving her Z pak right away at any sign of cold/flu, so it was a lucky coincidence for us that Dr. Ertel (peds) had given him that. May have helped. She said last year she thought the SJS was from a virus and this year seems to confirm it (didn't know what it was 3 years ago, but it also was probably from a virus since I don't remember him being on any meds at the time.
February 11-23, 2010 - Austin was holding steady, although ate a lot (even more than normal) from the steroids. The few white sloughed off spots and the red dots in his mouth held steady - did not get worse, finally today looked better - followed up w/Dr. Tamburro for an appointment today and she is happy with his progress. She did say she is "concerned" for him since any time he gets whatever virus he is getting, it could set the SJS in motion. She said to be vigilant and call our ped. any time he gets sick w/cold/flu like symptoms to put him on Z pak.
I had convinced myself that the SJS was from the ibuprofen last year that he was taking and not a virus since that is something we can control. Thankfully this episode was a non-event in comparison to the episodes last year and 3 years ago. This will be something he/we will have to watch for probably for the rest of his life.
February 9, 2010 - 5 days short of a year (from the start of the last horrible episode)- and let me tell you, it's been on my mind and Austin called me from the clinic - his mouth "felt funny." Bottom lip looked a little swollen, inside of his mouth red with a few white blotches. Called Pediatrician, took him in, did rapid strep (negative) - she put him on steroids just in case. Austin had been sick the week before with flu like symptoms for a day - then was like a cold (coughing). Had taken him in to the dr. just in case that week - had put him on Z pak because it was starting to sound a little like bronchitis.
February 10, 2010 - Took Austin to Dr. Tamburro (dermatologist) for her opinion since pediatrician thought the SJS was returning. Dr Tamburro said, yes, the SJS was back. Put him on a higher dose of steroids, weaning him down over 9 days. Said she had seen another girl from PA with reoccurring SJS - the only thing that seems to keep it in check is giving her Z pak right away at any sign of cold/flu, so it was a lucky coincidence for us that Dr. Ertel (peds) had given him that. May have helped. She said last year she thought the SJS was from a virus and this year seems to confirm it (didn't know what it was 3 years ago, but it also was probably from a virus since I don't remember him being on any meds at the time.
February 11-23, 2010 - Austin was holding steady, although ate a lot (even more than normal) from the steroids. The few white sloughed off spots and the red dots in his mouth held steady - did not get worse, finally today looked better - followed up w/Dr. Tamburro for an appointment today and she is happy with his progress. She did say she is "concerned" for him since any time he gets whatever virus he is getting, it could set the SJS in motion. She said to be vigilant and call our ped. any time he gets sick w/cold/flu like symptoms to put him on Z pak.
I had convinced myself that the SJS was from the ibuprofen last year that he was taking and not a virus since that is something we can control. Thankfully this episode was a non-event in comparison to the episodes last year and 3 years ago. This will be something he/we will have to watch for probably for the rest of his life.
Saturday, August 1, 2009
Things I've learned since Austin's SJS experience
1) Doctors all say "it's rare" - yet we have heard so many other stories on the SJS support website.
2) Many doctors have no clue how to recognize SJS or what it truly is.
3) I need to be more "in your face" when it comes to my family's health care. Doctors and PA's really don't know everything and I shouldn't be so trusting.
4) Rainbow Babies and Children's Hospital is an excellent facility with excellent people working there.
5) I have a new perspective on many things...
6) We were very lucky Austin's rounds with SJS weren't more severe than what they were. Many people are not as fortunate.
7) Although many people get SJS from ibuprofen or any other anti-inflammatory drug, sulfa based drug or Tamiflu, Austin's seems to be brought on by a virus.
2) Many doctors have no clue how to recognize SJS or what it truly is.
3) I need to be more "in your face" when it comes to my family's health care. Doctors and PA's really don't know everything and I shouldn't be so trusting.
4) Rainbow Babies and Children's Hospital is an excellent facility with excellent people working there.
5) I have a new perspective on many things...
6) We were very lucky Austin's rounds with SJS weren't more severe than what they were. Many people are not as fortunate.
7) Although many people get SJS from ibuprofen or any other anti-inflammatory drug, sulfa based drug or Tamiflu, Austin's seems to be brought on by a virus.
What is SJS? Who does it affect?
Stevens Johnson Syndrome (SJS), and TENS (Toxic Epidermal Necrolysis Syndrome) another form of SJS—are severe adverse reactions to medication. Adverse drug reactions (ADR’s) account for approximately 150,000 deaths per year in the U.S. alone, making drug reactions the fourth leading cause of death in the United States.
SJS is one of the most debilitating ADR’s recognized. It was first discovered in 1922 by pediatricians A.M. Stevens and F.C. Johnson after diagnosing a child with severe ocular and oral involvement to a drug reaction.
Almost any medication including over-the-counter drugs, such as Ibuprofen, can cause SJS. Most commonly implicated drugs are anti-convulsants, antibiotics (such as sulfa, penicillin and cephalosporin) and anti-inflammatory medications.
Although SJS afflicts people of all ages, a large amount of its victims are children. More female cases have been reported than male, however it does not discriminate against anyone. The SJS Foundation hears from people around the world who suffer from SJS and TENS.
SJS is one of the most debilitating ADR’s recognized. It was first discovered in 1922 by pediatricians A.M. Stevens and F.C. Johnson after diagnosing a child with severe ocular and oral involvement to a drug reaction.
Almost any medication including over-the-counter drugs, such as Ibuprofen, can cause SJS. Most commonly implicated drugs are anti-convulsants, antibiotics (such as sulfa, penicillin and cephalosporin) and anti-inflammatory medications.
Although SJS afflicts people of all ages, a large amount of its victims are children. More female cases have been reported than male, however it does not discriminate against anyone. The SJS Foundation hears from people around the world who suffer from SJS and TENS.
Treatment
First and foremost, affected persons must stop taking the offending drug immediately to prevent complications. Treatment for SJS is good supportive care. Because patients literally burn from the inside out, burn, infectious disease, ophthalmology and dermatology teams are recommended. IV fluids and high calorie formulas are given to promote healing. Antibiotics are given when necessary to prevent secondary infections such as sepsis. Pain medications such as morphine are administered to make the patient ascomfortable as possible. Most SJS patients can be managed in medical ICU or pediatric ICU. Patients with TENS should be treated in a burn unit
Risks
SJS and TENS are life-threatening reactions. If left untreated, they can result in death. Complications can include permanent blindness, dry-eye syndrome, photophobia, lung damage, chronic obstructive pulmonary disease (COPD), asthma, permanent loss of nail beds, scarring of the esophagus and other mucousmembranes, arthritis, and chronic fatigue syndrome. Many patient’s pores scar shut, causing them to retain heat.Th ese are just some of the side-effects that have been reported.
SJS Symptoms
SYMPTOMS
• Rash, blisters, or red splotches on skin
• Persistent fever
• Blisters in mouth, eyes, ears, nose, genital area
• Swelling of eyelids, red eyes
• Conjunctivitis
• Flu-like symptoms
• Recent history of having taken a prescription or over-the-counter
medication
Target lesions are not always seen in SJS!
IF YOU NOTICE TWO OR MORE OF THESE SYMPTOMS,
CONTACT A PHYSICIAN IMMEDIATELY!
• Rash, blisters, or red splotches on skin
• Persistent fever
• Blisters in mouth, eyes, ears, nose, genital area
• Swelling of eyelids, red eyes
• Conjunctivitis
• Flu-like symptoms
• Recent history of having taken a prescription or over-the-counter
medication
Target lesions are not always seen in SJS!
IF YOU NOTICE TWO OR MORE OF THESE SYMPTOMS,
CONTACT A PHYSICIAN IMMEDIATELY!
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