H1N1 + MECP2 = ?

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.

Surviving H1N1

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.


7 responses to “H1N1 + MECP2 = ?

  1. allison holland

    Hi,Thanks so much for the information Dick.Very helpful!

    We have been debating whether or not to get out son Asher, (2 yrs) the vaccination as was diagnosed with mecp2 duplication when he was 8mths old.

    We will be speaking with his immunologist shortly.


    • From our perspective, there were two questions: Is the vaccination likely to do harm? Will the vaccination provide protection? Of course, there is some risk associated with any vaccination and this one is no different. One might argue that that there is a bit more risk with this one because of the rush to get it out, but so far there have been few serious reactions reported and we know the risk of getting H1N1 is serious. So, if the vaccine works, it looks like the risk of getting the vaccine is much lower than the risk of not getting it for someone withe MECP2 Duplication.
      The other question is will it work for someone with MECP2 Duplication and a weak immune system. This is a harder question because we don’t have clear evidence. In our son’s case, we can only say that 4 people who have regular close contact with him have gotten H1N1 and so far he has avoided it. Based on this and his experience with other flu shots in previous years, it appears to be protecting him.

  2. Hi Dick,
    We decided to get the H1N1 vaccine for our son, Liam (2 years old, diagnosed at 14 mos.) after the immunologist found that Liam’s immune response to past vaccines was mainly good. (He has low titers for the HIB and Pneumococcal.) He received the vaccine 10 days ago and the seasonal flu vaccine 9 days ago. He has had no side effects from either one. No pain or soreness at injections site, no illness. He has not had a direct exposure to the virus that we know of. Our 4 year old (healthy) has had 6 classmates with the virus although she (not immunized) has not gotten sick. Liam does go in and out of her classroom several times a week. So we also do not know if we have just been lucky, or if the vaccine has already helped. The immunologist did tell me that it takes about 30 days for the body to build an immunity after getting a vaccine.

    • Wendy, this is very useful information. There seems to be considerable disagreement about the amount of time between getting the vaccine and actually being protected. Most authorities suggest that 10-14 days is usually enough, but some say 21 is a lot safer. Thirty days would be safer still. Of course, since individuals with MECP2 duplication typically have sluggish immune systems, it is likely to take longer not shorter. Since the development of antibodies is a progressive process, it is likely that vaccination can at least help after 10 days or so. Even if an individual gets infected, the antibodies may provide a headstart in fighting the infection. However, it would probably be a dangerous mistake to assume that just because someone is vaccinated, there is no reason to protect them from exposure. Based on a <a href="“>study published in 2000, most of “at risk” subjects vaccinated against influenza developed significant immunity in 7 days. Of course this doesn’t mean that you are safe to expose someone after 7 days, but it does suggest that even in the midst of the peak of the epidemic, vaccination can still be useful

  3. Our son Melker is 4 years old and have mecp 2. He got the vaccine H1N1 8 days ago and haven´t had any reaction from it.

  4. Our son David(15yrs diagnosed MeCP2 duplication 2008) was given the H1N1 jab 2 weeks ago but the doctor would like to give him another dose next week. Davidhad severe headaches for days after having the jab and his arm had localised swelling. Not sure whether he should get a second dose or not yet.

  5. Our son Lucas is 2 almost 3 next month dx MECP2 Dup and he had the N1H1 shot about 2 weeks ago and he had no reaction. He had it the day before we went to Houston and wethered the trip well.
    Caden our 7yr old same dx has not been able to get it due to fever and steriods in his system. We are waiting on 14 days free of steriods.

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