Please Help...Stevens-Johnson syndrome... - Mothering Forums

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#1 of 33 Old 11-26-2007, 05:13 PM - Thread Starter
 
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My children were mostly vaxed when they were younger...I have been pulling back more and more in the last few years and skipping most vax completely.
My 15 yr old was taken by my mom to the doctors about 6 wks or so ago and was given the chicken pox(varicella) booster without my approval(another rant i won't get into now). She has basicly not been feeeling right since and the day after Thanksgiving was hospitalized with sores developing around her mouth and eyes....she is a very, very sick little girl right now~~ :
The doctors are calling it Steven-Johson syndrome and saying it came from an unidentified virus. All I can think of is that vax i never wanted her to have ...I want to have my info straight before i go handing people their heads. please provide me with ammunition to fight for my daughter....

Allison~~ Mommy to 4 amazing troublemakers Newlywed to David Throwing in the towel on Fertility treatments after TTC for 5+ yrs. Simplifying our life in anticipation of cross country move in 2011
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#2 of 33 Old 11-26-2007, 05:16 PM
 
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They are saying it is this and offering no real explaination?!:

http://en.wikipedia.org/wiki/Stevens-Johnson_syndrome

that seems realy serious...is that what they say it is???

It says it can be caused by viruses/infections-- chickenpox maybe one of them?

"Parents are simply trustees; they do not own the bodies of their children"-Norm Cohen  Martial arts instructor intactlact.gifhomebirth.jpgnak.gif and mom to 4: DD1 (1/05) DS (7/06) DD2 (5/08) DD3 (2/11)
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#3 of 33 Old 11-26-2007, 05:17 PM
 
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Did you do a search on Vaers?
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#4 of 33 Old 11-26-2007, 05:18 PM
 
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This study says it happens after vaccination:

http://www.medscape.com/medline/abst...emed_ckb_ref_0

Quote:
We conducted a telephone survey of reports of Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) to the Vaccine Adverse Event Reporting System. We identified six cases of SJS or TEN after vaccination without other obvious triggers, suggesting that SJS and TEN might very rarely be caused by vaccination. Confirmation of this hypothesis will likely require controlled studies.
says more info is needed but that it has been reported

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#5 of 33 Old 11-26-2007, 05:27 PM
 
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Here again is a link that says there have been reports of this with the chicken pox vaccine:

http://www.vaccination.org.uk/vaccines/varicella3.html

Another from the NYT:

Quote:
Between 1995 and 2001, 759 serious adverse effects were reported. Such events included seizures, pneumonia, anaphylactic reaction, encephalitis, Stevens-Johnson syndrome, neuropathy, herpes zoster, and blood abnormalities. Anecdotal reports have found a higher association of side effects when varicella vaccine is given at the same time as the MMR vaccination (for measles, mumps, and rubella). Because combined vaccinations are being developed, such effects should be closely studied.
http://health.nytimes.com/health/gui...ickenpox).html

"Parents are simply trustees; they do not own the bodies of their children"-Norm Cohen  Martial arts instructor intactlact.gifhomebirth.jpgnak.gif and mom to 4: DD1 (1/05) DS (7/06) DD2 (5/08) DD3 (2/11)
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#6 of 33 Old 11-26-2007, 05:28 PM
 
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Originally Posted by celtic_angel View Post
My 15 yr old was taken by my mom to the doctors about 6 wks or so ago and was given the chicken pox(varicella) booster without my approval(another rant i won't get into now).

Have you filed a complaint against the doctor for giving non-emergency "treatment" without parental consent? :

"It should be a rule in all prophylactic work that no harm should ever be unnecessarily inflicted on a healthy person (Sir Graham Wilson, The Hazards of Immunization, 1967)."
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#7 of 33 Old 11-26-2007, 05:30 PM
 
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Oh mama, . Keep after them; don't let it drop.
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#8 of 33 Old 11-26-2007, 05:31 PM
 
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Here's one from the CDC that again talks about the reports to vaers about Sj syndrome:

http://cdc.gov/MMWR/preview/mmwrhtml/rr4806a1.htm

"Parents are simply trustees; they do not own the bodies of their children"-Norm Cohen  Martial arts instructor intactlact.gifhomebirth.jpgnak.gif and mom to 4: DD1 (1/05) DS (7/06) DD2 (5/08) DD3 (2/11)
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#9 of 33 Old 11-26-2007, 05:37 PM
 
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Oh mama....I'm so sorry this is happening....

It sounds like the booster may have caused all of this....I would definitely stay on the dr's. Definitely file a Vaers report......I would also consider contacting an attorney

Here's me I married then we had dd15 , dd11 , ds10 , and then and now we and I blog!
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#10 of 33 Old 11-26-2007, 06:31 PM - Thread Starter
 
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Oh mama....I'm so sorry this is happening....

It sounds like the booster may have caused all of this....I would definitely stay on the dr's. Definitely file a Vaers report......I would also consider contacting an attorney
just had to say...this is my beautiful girl this summer...
http://i126.photobucket.com/albums/p...pics/emily.jpg

right now she looks like she has 3rd degree burns all over her face...some of the scarring could be permanant...she can not even open her mouth to talk or eat without severe pain....

Allison~~ Mommy to 4 amazing troublemakers Newlywed to David Throwing in the towel on Fertility treatments after TTC for 5+ yrs. Simplifying our life in anticipation of cross country move in 2011
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#11 of 33 Old 11-26-2007, 06:36 PM
 
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That's just awful! I agree with the others - stay on top of this and report the reaction. Please keep us posted...
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#12 of 33 Old 11-26-2007, 06:37 PM
 
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There has got to be a way to get compensation for this. Was she on ANY other meds at the time? sick at all? Because if you can rule those things out, the vaccine really becomes the culprit...at least by all the things I have been reading on the causes.

I hope she feels better soon

"Parents are simply trustees; they do not own the bodies of their children"-Norm Cohen  Martial arts instructor intactlact.gifhomebirth.jpgnak.gif and mom to 4: DD1 (1/05) DS (7/06) DD2 (5/08) DD3 (2/11)
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#13 of 33 Old 11-26-2007, 06:40 PM
 
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Oh, mama. I am so sorry this is happening to you. I am pretty knowledgeable about this. I have had genital herpes for 4 years, and last winter, I developed this bizarre rash after a bad outbreak. It was misdiagnosed as chickenpox, eczema, folliculitis...finally I made the connection after it happened a few more times that is was Erythema Multiforme, and that it was related to the herpes virus, as the rashes always followed an outbreak.

Upon my extensive research I came upon Stevens Johnson Disorder. My dermatologist told me that EM is the lower end of the spectrum, and that what I had could progress to SJS, and TEN. The research I came upon stated that herpes related EM is technically a separate disorder, but in the same family.

Anyway, I guess I am trying to say that herpes, and chickenpox are in the same family, and so are EM and SJS, so I think it is very likely that your poor DD is having a vaccine reaction. Nothing else really causes SJS besides vaccines and allergic reactions to certain medications.

I will say a prayer for your daughter and I hope that thing turn out well. I had horrific mouth sores, so I can't even imagine what your DD is going through.:

Amy, mommy to Ava, 6, Gavin, 4, Lila, 2, and Baby #4 due in early November! joy.gif
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#14 of 33 Old 11-26-2007, 06:41 PM
 
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Quote:
Originally Posted by carriebft View Post
There has got to be a way to get compensation for this. Was she on ANY other meds at the time? sick at all? Because if you can rule those things out, the vaccine really becomes the culprit...at least by all the things I have been reading on the causes.

I hope she feels better soon

:

"It should be a rule in all prophylactic work that no harm should ever be unnecessarily inflicted on a healthy person (Sir Graham Wilson, The Hazards of Immunization, 1967)."
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#15 of 33 Old 11-26-2007, 08:10 PM
 
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Here is the product insert. It lists SJS as an adverse reaction observed post marketing of the vax. Report it and don't let anyone tell you it's not a vax reaction. It is.

http://www.merck.com/product/usa/pi_...varivax_pi.pdf

Hope you can find some help, insight, support here:

http://www.sjsupport.org/

I wanted to let you know that I survived SJS in my early childhood (with no lasting scars). I had a very serious case and I nearly didn't make it because hardly anyone knew what it was back then (40+ years ago). Fortunately my pediatrician had recently been to a conference where it was discussed. No one ever even thought it was a drug reaction back then, they just said it was triggered by a nonspecific virus. This, however, is how my vax research began in earnest about 10 years ago (my dh wanted me to get a rubella vax and I didn't want to) so I started looking into my own history with vax. My SJS developed around 18 mo., right after my measles vax.
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#16 of 33 Old 11-26-2007, 08:16 PM
 
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A friend of mine was just diagnosed with this. They said it was because she had developed an allergy to penicillion. She had been taking an antibiotic with it for strep. Not sure if that helps you any.

Give more**Expect Less
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#17 of 33 Old 11-26-2007, 10:44 PM
 
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#18 of 33 Old 11-27-2007, 12:08 AM
 
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I couldn't read and not post. I'll say a prayer for your sweet Emily's recovery tonight.
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#19 of 33 Old 11-27-2007, 12:36 AM
 
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I'd file a claim with the National Vaccine Injury Compensation Program.

http://www.hrsa.gov/vaccinecompensat...s_eligible.htm


Your daughter is eligible as she is hospitalized and Varicella is an eligible vaccine.

"It should be a rule in all prophylactic work that no harm should ever be unnecessarily inflicted on a healthy person (Sir Graham Wilson, The Hazards of Immunization, 1967)."
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#20 of 33 Old 11-27-2007, 12:47 AM
 
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I don't really have anything to add, but I couldn't read this and not respond with
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#21 of 33 Old 11-27-2007, 01:41 AM
 
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I am so sorry for what you and your daughter are going through.
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#22 of 33 Old 11-27-2007, 01:49 AM
 
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I'm so sorry for you and Emily. I'll say a prayer for her.
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#23 of 33 Old 11-29-2007, 09:00 PM
 
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Any updates? Hope she is feeling better

Amy, mommy to Ava, 6, Gavin, 4, Lila, 2, and Baby #4 due in early November! joy.gif
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#24 of 33 Old 11-29-2007, 11:01 PM
 
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I'm so sorry.

Wish there were something I can do..
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#25 of 33 Old 11-30-2007, 12:25 AM
 
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SJS is (thankfully) rare, but serious. I hope she is improving. Unfortunately, there is no way to tell what sets off a SJ reaction. Most commonly it is a drug reaction. Antibiotics and some seizure meds are main causes. And yes, it can be caused by a virus. If it is a drug reaction it usually starts fairly quickly-within a week of taking the medicine.

Hope she is better soon.
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#26 of 33 Old 11-30-2007, 04:32 AM
 
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hope she feels better soon
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#27 of 33 Old 01-01-2008, 01:50 PM - Thread Starter
 
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I can not believe I never updated....so sorry....
Emily's hospital stay seemed to lead right into the holiday's and I have pretty much been out of my mind for the last month...
She recovered well enough to be sent home after about a week and a half. She gave us all quite a scare and reminded us to count our blessings every day~~ Her skin was just starting to look better in the last week or so and then she had another outbreak of sores around her mouth!!

Supposedly, this is "normal" as the virus is now part of her system and she can look forward to these outbreaks on a semi-regular basis........
Anyone have any tips on building up her system to help ward off this ??
For an almost 16 year old girl this is particularly traumatic...she is quickly becoming a recluse because she is embarressed to let anyone see her~~
She is a theater junkie with auditions coming up soon :

Allison~~ Mommy to 4 amazing troublemakers Newlywed to David Throwing in the towel on Fertility treatments after TTC for 5+ yrs. Simplifying our life in anticipation of cross country move in 2011
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#28 of 33 Old 01-01-2008, 01:59 PM
 
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Thanks for updating.

I would give her a large dose of very good, food grade Vitamin C and I would also give her a large dose of cod liver oil.

Anything you have to try has to be done for at least 3 weeks or longer to see a difference.
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#29 of 33 Old 01-01-2008, 02:08 PM
 
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I agree, vitamin C in the form of sodium ascorbate crystals which you can find here from Bronson should be a part of the everyday ritual for quite some time now. she can take as much as she wants until she reaches "bowel tolerance" meaning diarrhea. since her system is compromised right now that would probably take a lot.

http://www.bronsonvitamins.com/app/s...tm?&item_id=50

I would also advise not using products like tylenol or advil.

DD1 7/13/05 DD2 9/20/10
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#30 of 33 Old 01-01-2008, 02:21 PM
 
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Thanks for updating.

I would give her a large dose of very good, food grade Vitamin C and I would also give her a large dose of cod liver oil.

Anything you have to try has to be done for at least 3 weeks or longer to see a difference.
I agree with this. I would get her on a high vitamin cod liver oil. There is a really good fermented one Green Pastures. Also, I would get her some really good quality virgin coconut oil, its great for the skins.
Also, Pure Radiance C is a great natural Vit C source. I know Radiant Life Company sells it, im sure you can get it elsewhere.

Many thoughts going to your daughter! And to you too! :

Bobbi

Wife to Chris

Mama to Maggie

.http://snoodledoodles.blogspot.com/

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