Scleroderma and H1N1 vaccine

Dear all,

Does anybody know if there are any or heard about if the H1N1 vaccine have triggered the scleroderma?

My 5 year old daughter got scleroderma (localized) 2 months after the vaccination program. Her doctor say this may be the reason.

What do you think?

Thanks in advance.

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Ask the doctor what he bases his opinion on,

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It reminds me of people believing vaccinations caused autism, which the doctor who did that study admitted he faked it.

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Konstanse, I agree; ask your doctor what is in the H1n1 vaccine that could cause or trigger scleroderma. I would not rule the theory out. Maybe it triggered inflammation..... You know your daughter better than anyone, and if the onset of scleroderma came two months after the vaccine I would pursue it. I would look at every possibility. One child may have a genetic predisposition to an illness and something may tip the scales.
Here is an interesting article regarding vaccines: http://www.cbsnews.com/8301-31727_162-20049118-10391695.html

Your protocol may depend on the cause--although we may never know the cause for sure--and may never be able to prove scientifically what we think the cause is--- the doctors can not prove their theory, or lack of theory, either. Sometimes a mother's intuition 'knows best'.

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I have a son with autism and do not believe the vaccine hypothesis in regards to autism. There is very clear science that shows that vaccine preservatives do not cause autism, yet this idea persists and many mothers avoid vaccinating their children. Not vaccinating puts children at risk of developing very serious diseases that had almost been eradicated in the developed world but are now being seen again because a significant number of parents are scared of immunizations. I firmly believe that the benefits of vaccines outweigh the risks. However, I have not read much about the H1N1 vaccine so I can't really comment on the effects it might have. I can really only comment on the standard set of vaccines given in the baby and toddler years, and their link to autism (or LACK of link to autism).

I think it's very normal to look for the triggers or cause when you're faced with an illness like scleroderma. Could the H1N1 vaccine be involved? I suppose it's possible. I can imagine that there could be an argument made for a vaccine initiating an immune response that triggers an autoimmune response. But I don't think that there is any evidence implicating vaccines in autoimmunity at this point. I would talk to your doctor (like everyone suggested) and ask WHY he believes there could be a link. Ask him to explain his theory on how this could happen so that you understand it and can make sense of any articles that you come across in your research.

Finally, while I totally understand why you want to understand what caused your daughter's illness, the most important thing is to make sure she's getting the best medical advice and treatment you can find. Get her to a scleroderma specialist if you don't already have one, and ask questions about symptoms and treatment here too because you will always find great advice and a number of different perspectives from people who've had real-life experience.

Take care,

Zoe

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I agree with Zoe, get to a scleroderma specialist and if you don't feel comfortable with their protocol, look at other options. We have seen both types of doctors--- sclero specialists and antibiotic protocol doctors. The more knowledge and people you talk to the better! I still think it is critical to have a doctor who knows scleroderma to monitor your daughter.

I am not sure about the H1N1 vaccine either. But I would still talk to your doctor about it. After all, he commented that there could be a link so talk to him about it. "University of Pennsylvania's Dr. Brian Strom, who has served on Institute of Medicine panels advising the government on vaccine safety says the prevailing medical opinion is that vaccines are scientifically linked to encephalopathy (brain damage), but not scientifically linked to autism. Another theory does not implicate the preservatives in vaccines, but implicates Human DNA being contained in the vaccines."

I agree that some vaccines are critical, but some are optional, and the jury is still out on those. Some doctors feel we are not building our natural immunities anymore---hence the chicken pox vaccine is now being linked to outbreaks of shingles. Apparently, when we are exposed to certain diseases over the years, it helps build our immunities--they call that 'brush up' exposure to certain diseases. These brush up exposures help us build natural immunities without getting the full blown disease. (Similar theory of over using antibacterial soap. We don't build natural everyday immunities.) Yet, there are some vaccines that I believe are critical to your child's health. Why they can't break the vaccines up and give them at different times and doses is beyond me.

Zoe, I have a friend and she does not believe her son's autism is related to the vaccines in any way. Yet, I have other friends who do believe the vaccines caused their childrens' autism. One of my friend's son had a convulsion after getting the DTPA vaccine--and their pediatrician did not allow her second son to get that particular vaccine. Every child is different--every child has a unique gene make up. My point is.... the cause for one child may be different for another child. You must do what is right for your child.

I have been knee deep in this sclero battle for over two years for my now 9 year old son. He has localized scleroderma on his scalp. We gave him a subcutaneous shot, once a week, of methotrexate, for almost two years. We also gave him zithromax from an antibiotic protocol doctor. After an MRI, white matter showed up on my son's brain, so we took him to another children's hospital for a second opinion. They are not sure if the white matter was caused by the methotrexate, by the sclero, or something else altogther. The white matter is not directly underneath the scalp lesion. That is where the scleor in the brain usually presents--directly underneath the lesion.

And now I come to find out that the Bedford Labs (aka Ben Venue Labs) was shut down for quality control. Rust falling into vials and mold on the walls. That is why there is a methotrexate shortage. The FDA tested the preservative free methotrexate that was still coming out of Bedford's manufacturing facilities and said it was safe. Hmmm, they let them run a 'dirty' facility yet this particular med was safe?

The only vaccine, as far as I know, that has been linked to autoimmunity is the Lyme Vaccine. This is a very politically charged, hot topic of debate. Yet, my son tested positive for lyme at an independent lab.

Since every child is different, there may be different causes or triggers for each child. Personally, I think my son's sclero was cause by an infection, whether it be lyme or something else. We have to be the best advocates for our own children. No one knows our children better than we do. I have spoken with every doctor and mother imaginable, and researched day and night, and that has been a great way for me to educate myself about the disease and what protocol is best for my son.

Best wishes to all!

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My daughter had her first dose of NIHI at her Well check in December of 2010 and exactly two weeks later she got a strange looking linear rash running down both arms, her right rib cage and her right thigh. The first dermatologist told us right off that it was Scleroderma and took a skin biopsy. The biopsy came back inconclusive and he changed his diagnosis to Lichen planus. We were sent home with topical steroid.

She had been a completely healthy child until December 2010.

In our research we found this publication at Pub.Med.gov: http://www.ncbi.nlm.nih.gov/pubmed/21051866

Lichen planus occurring after influenza vaccination: report of three cases and review of the literature.

Access to it is free just click the karger link at the top right. It reports on small number of women who all had reactions to the annual flu shot within a two week time frame. They were diagnosed with variation of the Lichen. These researchers point out that it may have been the germ or the trauma of the injection that triggered the autoimmune response. Again, it reports on a very small number of women, but offers interesting information on their development and cases.

This thing was so aggressive that at the month follow up she'd already developed thickening on her abdomen and was rapidly spreading down her right leg.

The lichen planus diagnosis was retracted by our first Dermatologist. We were referred to Pedi Rheumatologist and Pedi Dermatologist. After another skin biopsy, a muscle biopsy and an MRI, my daughter was diagnosed with Morphea Profunda and Linear Scleroderma.

At our first steroid infusion we sat next to two other pedi patients and their parents. Both the other two children had had severe viral (respiratory/stomach) infections right before they showed symptoms of their autoimmune disease. They were both convinced that their child’s autoimmune illness was triggered by the virus.

We have never shied away from the necessary childhood vaccinations. The ONLY immunization my daughter was given at that Well check in December 2010 was the dose of NIHI via injection.

Life changed.

I am so sorry that you and your child are in this position. We are now a year into our Linear Scleroderma/Morphea Profunda journey and battling joint threatening arthritis brought on by the thickening over her joints. Both our pediatrician and pediatric rheumatologist agree with us. They both suspect that the NIHI vaccination triggered my daughter’s autoimmune response.

It is so important to locate a scleroderma specialist in your area if you have not done so.

My heart goes out to you.

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Hmm...It's interesting that you bring this up. I normally steer clear of vaccinations because of that reason.

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Skidamarink,

I am so sorry for your daughter and your family. My heart goes out to you as well.

Another friend of mine has a son who has Parry Romberg Syndrome. Two weeks after some immunizations he developed a terrible rash on his face. She too suspects the vaccines or some kind of infection--bacterial or fungal. Almost every mother I have spoken with over the course of two years will testify that their child had some kind of respiratory/bacterial or viral infection before the onset of the scleroderma. Maybe all of this 'evidence' is anecdotal but I sure believe in a mother's word. It is common sense. You know your child and you know when the onset of disease started.

Since my son was diagnosed with linear scleroderma we have declined all flu immunizations. Interestingly enough, a few of the children in my son's class who did get the flu vaccine last year developed terrible cases of croup approximately one week after the vaccine. I find that to be very telling......

We have never shied away from the necessary childhood vaccinations either. But we will never get another flu vaccine again. Ever.
I never got the flu vaccine as a child and I was just fine--other than being categorized as the 'crazy mother'--LOL!

Skidamarink, is your daughter on prednisone and methotrexate?

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Hello Lauren Anne,

We give my daughter a 0.7 weekly injection of Methotrexate.

My daughter underwent the SoluMedrol infusions last summer. Due to the aggressive nature of her Morphia Profunda/Linear Scleroderma, she would take an infusion of this med three consecutive days a month. We did this for three months while the Methotrexate built up in her system.

The results of these big blast of medicine came incredibly fast at halting the progression of the linear rash and morphia plaque. It amazed me that the day after the first infusion the rheumatologist came in to exam her expecting to find change in the rash and though slight, there was visible change. It afforded us enormous relief when almost overnight the scleroderma induced arthritis in her ankle, knee and wrist disappeared and she felt no more pain.

Towards the end of the month, right before the next infusion, we would be able to tell the the effects of the steroid were waning.
Of course, as with all powerful steroids, there is a maximum dose that can be administer before the medicine causes damage to the body.

The Methotrexate has to some degree slowed the progression of this condition, but it has not stopped formation of new linear rash on her ribs or the formation of new plaque on the foot and ankle. We have just begun infusions of a Orencia (arthritic med) and will have procedure to inject the ankle joint with a steroid to try to prevent permanent damage.

Best wishes.

Thank you for your kindness.

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Hi Skidamarink!

I am so glad some of the progression has stopped! It is very scary to watch your child's condition progress. There is nothing worse
than waiting for the morphea to burn out. The prednisone really helped my son while he was taking it, but as soon as he was tapered off of it, some of his symptoms came back. I am not sure if the methotrexate ever really helped, but it did take about 4 to 5 months for all the progression to stop.

You sound like you are in good hands and that the Orencia and steroid injection will do the trick. In addition, you caught your daughter's condition early and that is definitely in your favor. Thank you for your kindess and best wishes to you and your family.
The juvenille arthritis forum is a good source of information and there are many knowledgable and compassionate people there--in case you have questions about any arthritic components and factors.

Take care, and keep us posted.

Best,
LaurenAnne

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