4 November 2009 – About H1N1 and MECP2
Many parents of individuals with MECP2 Duplication naturally have been concerned about the H1N1 virus because most who have MECP2 Duplication have weak immune systems and are very vulnerable to respiratory infections. There isn’t much information available, but here are some bits of information. Of course, this is not intended as medical advice, and individuals and families are, of course, advised to get individual medical advise from their own doctors.
Our son, David, received the H1N1 vaccine eight days ago and the regular flu vaccine about two weeks earlier. He tolerated the vaccine well and so far he has not gotten sick, even though many people around him have been sick. Of course, we can’t tell if this is just luck or the vaccine has already kicked in. In any case, the vaccine did not harm him and it appears to have helped so far. He had the adjuvanted, dead-virus version of the vaccine. Live virus vaccines may not be a good choice for individuals individuals with MECP2 Duplication because their immune system may not be adequate, but that is a matter to discuss with your doctor. It is important to remember that vaccines take time to work, and can take as much as three weeks before they provide good protection. However, even if they don’t provide complete immunity, they can help reduce the severity of the illness.
Tess & Greg O’Connell from Australia shared this story about her son’s H1N1…
Our 7 year old son, Travis, had previously been admitted to hospital one week prior to having H1N1 with sepsis, a bowel obstruction and pneumonia. So his immune system had taken quite a beating. The signs and symptoms we observed were a high temperature that would not come down, even after taking panadol [for North Amrricans, this is the same as Tylenol]. He was shivering even though he was hot, his skin was pale and clammy to touch. A wet sounding cough and runny nose. He was extremely lethargic and had started to vomit.
We were very lucky when we presented to the hospital that one of the emergency doctors recognized us and immediately started Trav on the Tamiflu antibiotics, and IV fluids as he was dehydrated and would not take fluids orally. It took several days before we started to see any improvement in his health and he got a lot worse before there was an improvement.
We took Trav to hospital within the first 24 hours of him becoming unwell, and were told that in order for the Tamiflu to be effective it needs to be started within the first 48 hours of becoming unwell with H1N1. I am not sure how accurate this is, but we were also told that once you have had H1N1 you cannot have it again.
What has your experience been?
If you have had experience with H1N1 or flu vaccine in an individual with MECP2, please consider sharing it using the comments section below.