My son is starting Kindergarten this week and had to have some vaccinations. While in the doctor's office I mentioned that we are going to start his Deflazacort this week-end. They said that was fine they could go ahead and give him his shots. It seems that if he had already started the steroid they would not be able to give him the the MMR or the varicella. Apparently, since the steroids suppress his immune system he might become sick from the vaccine itself. Also, they were out of the varicella (it should be in today) and said they would have to give it later. I reminded them that once you start steroids you don't stop so if he's going to have it they need to do it now. My concern now is how long do we wait to start the deflazacort after the varicella. The nurse said what she had read did not address that issue as if it didn't matter. But I don't want to take any chances. We are definitely not starting it this week-end (Labor Day). Would the week-end after be safe? Has anyone else run into this when their child was starting school? And what about flu shots? Are those safe to give while on steroids?
Thanks,
Lisa

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There are flu shots available that are mercury free. My son's pediatrician only uses the mercury free brand. Maybe you could ask your physician about that option.
Ellen Wagner said:
There are flu shots available that are mercury free. My son's pediatrician only uses the mercury free brand. Maybe you could ask your physician about that option.
Ellen, from what I've heard, only the mist is mercury free and that is not advisable for boys on steroids. If you are aware of other mercury free flu vaccines, please provide a link as this would be valuable information for those of us concerned about excessive mercury in our boys.
I would like to know about this shot that is mercury free as well. I did not know that it was not good to use the flu mist, but my son had no back reaction to the flu mist. Thank you I have learned alot.

Suzanne
Here is a link to the CDC that discusses the amount of mercury in different brands of flu vaccines.http://www.cdc.gov/FLU/ABOUT/QA/thimerosal.htm". My opinion is that the risk to our boys from a respitory infection is great and the risk of a reaction to mercury in a flu vaccine is at best theorical, the choice would be to vaccinate. My son is 10 and uses a bipap at night and the pulmonologist has told us a bad respitory infection could cause him to require a ventilator and that he may never be able to get off a vent if he has to go on one. We do all we can to prevent such infections. Six years of steroids only increase the risk as they suppress the immune system. The concern with the flu mist is that it is a live vaccine and therefore could cause the flu in someone immuncompromised. My son's pediatrician's office does only purchase the vaccine with the trace amount or thimersol free flu shots.
What I have been wondering about is whether there is any reason to try to *catch* chickenpox live before steroids come into play. Our son is still a baby and probably years away from steroids ... but once you get the chickenpox the virus stays in your body so ... would the residual virus be problematic? Or is this simply that live vaccines are likely to make a person on steroids catch the diseases they are supposed to prevent?

Another thought:
Is the general consensus in the DMD community that vaccines are a good idea? We had planned not to vaccinate our kids and even now are thinking that really the only one we should do is the DTaP since whooping cough takes so much muscular effort to get over.

I would love to hear from anyone else who is doing limited or no vaccines.
This is only my opinion, but our children are at more risk than most from these seemingly harmless childhood diseases. If you start steroids before giving MMR vaccine for example, and your son gets the measles he is the child at risk of being very sick. The steroids compromise the immune system and relatively harmless illnesses can become very serious very quickly. My son had RSV this past December. He is 10 and RSV is like a cold for most except young infants. My son was sick for close to four weeks, endured two rounds of anitbiotics, around the clock use of the cough machine, three visits to the doctor and was very close to spending Christmas in the hospital. A tutor had to come to the house and get him caught up in school and it was a rough month. My son is a child who definately benefits from herd immunity. The effectiveness of vaccines is variable in children on steroid therapy and so although he has been vaccinated, I worry that he may be exposed to measles or mumps or whooping cough if they become more prevelant in our community and he will be the statistic that is hospitalized or worse. We do all we can to avoid exposure to infection. As our boys age their health becomes more precarious. This horrible disease affects so much more than the ability to walk. My son is still ambulatory but it doesn't take much for him to be wiped out. He just doesn't have the reserve a healthy child has to fight off infection. I would suggest you speak with a physician familiar with DMD and steroid therpy such as Dr. Wong in Cinn before deciding about vaccines.
I would like to share our experience regarding the choice to vaccine or not. My son is only 4 and was diagnosed with DMD just a couple of months before his 3rd birthday. Thankfully, he rarely gets sick, but when he does it takes him much longer to recover than other children his age. His balance is off for a couple of weeks even after the virus is gone and it takes him a good 3-4 weeks to get back to his "normal". He has JUST started steroids 6 days ago, so this has been our experience prior to starting steroids. Adding steroids to the mix opens a whole new dynamic....

I can only imagine what could have happened if he had contracted the measles, mumps or chicken pox and we had opted not to vaccinate. I have friends who have chosen not to vaccinate or to delay vaccinations for various reasons and I respect their decisions, but I am thankful that even early intuition, long before the diagnosis made me choose otherwise. I truly believe that any virus our boys contract effect their muscles MUCH more than the typical child, not just something as serious as whooping cough.

I would also recommend that you speak with a medical professional that is very well versed with DMD so that you can make an informed decision regarding both of your children.
I would say certainly try to get chickenpox before starting steroids. Varicella can cause complications to our DMD boys who are on steroids, but is harmless (despite what the drug companies try to tell us) to healthy children. I have been disgusted with the mandatory varicella vaccination since it came on the market. I feel that my son should have had the oportunity to contract this harmless disease by now and been in the clear. Now I just have something else to worry about. Thanks Merc!

I know there are many others who disagree with me on this, but I remember having chickenpox as a kid. No healthy child ever had serious complications from this disease. It was only after it was put on big pharma's hit list that kids (most of whom had complications as a result of unnecessary medical interventions) suddenly started dying and having "serious complications". I am in a very delicate situation here. I don't trust drug companies - at all. Yet the only hope for the survival of my son comes from these very same purveyors of toxicity.

Arrgh! I just want to scream.
Jerry Dallapè said:
I would say certainly try to get chickenpox before starting steroids. Varicella can cause complications to our DMD boys who are on steroids, but is harmless (despite what the drug companies try to tell us) to healthy children. I have been disgusted with the mandatory varicella vaccination since it came on the market. I feel that my son should have had the oportunity to contract this harmless disease by now and been in the clear. Now I just have something else to worry about. Thanks Merc!

I know there are many others who disagree with me on this, but I remember having chickenpox as a kid. No healthy child ever had serious complications from this disease. It was only after it was put on big pharma's hit list that kids (most of whom had complications as a result of unnecessary medical interventions) suddenly started dying and having "serious complications". I am in a very delicate situation here. I don't trust drug companies - at all. Yet the only hope for the survival of my son comes from these very same purveyors of toxicity.

Arrgh! I just want to scream.

Don't forget, chicken pox can lead to shingles. My husband has suffered from Shingles during his adult life, whenever he gets too stressed. HE says it is very painful. You can't get shingles unless you have had chickenpox, and the virus lies dormant in your nervous system. So even though it is rare, there are still complications from t his "harmless" disease. Why put our boys through the possibility of more pain and discomfort? Sorry, I am an advocate of vaxing - the risks from vaxing are so minimal and rare, yet the diseases themselves can cause greater complications. But I'm not here to get into a debate, in the end it's an individual's choice.

For those who are worried, here's an article listing the flu vaccinations that are either mercury-free or have small traces of mercury (as opposed to the normal dosage of around 12.5ml) - http://www.signonsandiego.com/uniontrib/20061121/news_lz1c21qanda.html

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