Sunday, December 4, 2016

Stevens-Johnson Syndrome: Mystery Diagnosis Baby Julie

August 23, 2010 by · 8 Comments 

People have been frustrated after seeing the “Mystery Diagnosis Baby Julie” video on Discovery Health’s official website when they were left hanging by the video.  The video showed the problems that the baby had but never the final correct diagnosis.  That is mainly the reason why people are searching for the continuation of the answer to this video.  They are even making jokes that they should call Dr. House because he knows what’s wrong with Baby Julie.  Some day, House M.D. might feature this kind of health condition in one of their episodes.

Babies are the hardest to diagnose because they cannot express themselves on what they really feel.  They will only let you know if they are in dire pain when they cry like there’s no tomorrow.  You can only observe their temperature and their behavior and probably do some blood tests when examining them.

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A commenter on YouTube suggested that it may be Stevens-Johnson Syndrome as she researched it on Google with the name Julie.  Another commenter also said the she watched that episode on Discovery Channel and that indeed it is the Stevens-Johnson Syndrome.

According to Wikipedia, the Stevens-Johnson Syndrome is a life-threatening condition affecting mainly the skin causing the epidermis and the dermis to seperate through cell death.  It’s also thought to be as a hypersensitivity condition. Its symptoms are conjunctivitis of the eyes for children but it usually starts with fever and sore throat.  Most often, this is misdiagnosed and antibiotics are being given to the patient like what happened to Baby Julie.  When it gets worse, lesions appear in mucous membranes such as mouth, lips, genital and anal regions which causes difficulty in eating, drinking and bowel movement.  Rashes also occurs all over the skin.

The Stevens-Johnson Syndrom or SJS is said to be the milder version of toxic epidermal necrolysis and is caused by an immune system disorder.

To know more about the Stevens-Johnson Syndrome, you can search the web and read books through your own research to know more about Stevens-Johnson Syndrom and Baby Julie’s mysterious condition.

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Comments

8 Responses to “Stevens-Johnson Syndrome: Mystery Diagnosis Baby Julie”
  1. My sister is Jean McCawley and my niece is Julie. They spent countless hours filming this story. They were told that Mystery Diagnosis would include information about the non-profit organization that was created because of Julie contracting SJS. That foundation is called The Stevens Johnson Syndrome Foundation That link is http://www.sjsupport.org Stevens Johnson Syndrome is far from rare, it’s under reported. Legendary basketball coach and humanitarian Manute Bol died from SJS on June 19th, 2010. Julie also runs a website for children affected by SJS That link is http://www.sjskidssupport.org August is SJS awareness month, find out about Stevens Johnson Syndrome before it finds someone you love.

  2. Robert R. Landsperg says:

    I am Julie’s grandfather. My daughter Jean started the Stevens Johnson Sydrome Foundation 16 years ago to bring public awareness to this devasting Adverse Drug Reaction (ADR). We are all disappointed that Mystery Diagnosis never mentioned the foundation or the work they are doing to inform the public about this horific reaction. My only conclusion is they have gone to bed with the drug companies
    that sponsor them.

  3. I am Jean McCawley, Julie’s mother. Julie was diagnosed with Stevens-Johnson Syndrome and quickly crossed over to Toxic Epidermal Necrolysis.
    It took many months of recovery. Julie was left with life long side-effects including permanent blindness. At 15 months old Julie was treated with the Ketogenic Diet and has remained drug and seizure free. We started the
    Stevens Johnson Syndrome Foundation as resource to patients and their families.
    Please visit our website at http://www.sjsupport.org
    Also you can see Julie story of recovery at
    http://www.youtube.com/watch?v=NQwuRkp4IOk
    August is Stevens-Johnson Syndrome Awareness Month Find out about SJS before it finds someone you love!

  4. sue eggleston says:

    I suggest that everyone find out all the information they can about this syndrome! All it can take is a simple dose of motrin/advil to end up with SJS. the things I saw Julie and her family go through was absolutely horrific! It seems to me that they keep SJS and what can cause it under wraps, so people will continue to take drugs and keep the drug companies in business. Yes drugs are helpful, but people need to be aware of SJS and what to look for if they start to experience side effects. I think a warning should be on every drug lable!

  5. Angela Peck says:

    My name is Angela Peck and my son Tyler had sjs this year. He is 14 years old and his also progressed to TENS. It is a horrifying thing to watch your child go through. Knowing it can’t be stopped and the high probability of death, there isn’t much left to hold on to. In the 4 months we were in the hospital he had 98% coverage, lost lining to his internal organs, had 11 surgeries and still has a long way to go. We are working now on trying to find the donations to pay for his corneal transplant that is needed to save his vision.

    This is a real illness, it is the scariest thing to ever witness and people like Julie and Tyler and Ian Gonzales. Among so many others are true heros and remarkle people! Please research this horrible illness and help people like Jean help others to be educated.

    • Angela..I also suffer with long term side affects from sjs/tens..A year ago I was diagnosed..I am not a candidate for the corneal transplant, but I have been to Boston foundation for sight in MA. The prosthesis that is being fitted to most sjs patients go there that know about the BOS-P. It is an alternitive to undergoing surgrey. http://www.bostonsight.org is where you can look up the details of the BOS-P.

  6. Cindy McNally says:

    My 11 year old granddaughter got SJS 2 years ago and because of complications will live with a condition that will require lung transplants in her future.
    Because of Jean McCawley and the SJS Foundation we are working hard to get AWARENESS out to as many people as we can. Go to sjsupport.org and get a copy of the Fact Sheet. Keep a copy in your medicine cabinet. Protect your family and friends by being AWARE of the Symptoms.

  7. Kelly Sampson says:

    My daughter was diagnoised with SJS six days after she turned 3. Her case was not a severe as some, but as aparent to watch her transform into a different person was horrifying. My daughter contracted SJS from “having an allergic reaction to SOMETHING in the air” she was NOT on ANY MEDICATION at the time of her out break.I too was told she had the chicken pox and to “keep her comfortable”! Today my daughter is 6 yrs old and when she gets hot she “over heats” due to not being able to sweat. Please spread the word about SJS it could just save a life! for more information on this awful syndrome go to SJSupport.org!!!! ******OH by the way: CHILDRENS MOTRIN HAS BEEN LINKED AS ONE OF THE MOST COMMON CAUSES OF SJS************

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