H1N1 Influenza

What Should be Done for People with PWS and the H1N1 Influenza (Swine Flu)?

The following is a response from our PWSA (USA) advisory board members:
Todd R Porter, M.D., MSPH
Merlin Butler, M.D.,Ph.D.
Marilyn Dumont-Driscoll, M.D., Ph.D.

Individuals with Prader-Willi syndrome should receive the immunization when it is available. Persons with PWS appear to have a normally responsive immune system and should respond appropriately to vaccinations and/or medication to combat illnesses. Most hospitals are requiring both the H1N1 swine flu and regular influenza vaccinations for all employees. It is thought to be fairly safe. Since we do not know how problematic the swine flu will be this year, we recommend that individuals with PWS should be vaccinated especially if there are other health issues.

The symptoms of both the novel H1N1 and seasonal influenza viruses are fever, cough, sore throat, headache, chills and fatigue, and sometimes, diarrhea and vomiting.

Considering that in PWS: 1) we cannot always use fever and pain as an indicator of severity of illness; 2) there is a higher incidence of respiratory problems due to asthma, obesity, weak muscle tone, etc; 3) the possibility exists of central adrenal insufficiency (CAI); a parent should have their child or adult with PWS evaluated by their primary care provider if there are concerns about their breathing, hydration, or appearance.

While the H1N1 virus is a novel influenza virus and has garnered much media attention, we cannot risk ignoring the historical morbidity and mortality of the seasonal flu for which we already have a vaccine that is effective. One of the things that sets it apart is that it seems to have targeted the younger population (5 to 24year olds) and pregnant women. Regarding vaccination, we would advise parents to focus on also having the child and family vaccinated against the seasonal flu viruses. An important note is that children less than 9 years of age who are receiving the flu vaccine for the first time, or who received only one dose last year for the first time, need a booster dose 4 weeks after the first dose. The current H1N1 guidelines list all children 6 months and older as a target group to receive the vaccine.

A person with symptoms should be treated empirically based on the level of clinical suspicion, underlying medical conditions, severity of illness, and risk for complications The decision to use antiviral medications (neuraminidase inhibitors tamiflu and relenza) will be determined by the physician based on the clinical presentation and severity. Tamiflu is indicated for use in individuals over 1 years of age, however, the CDC has provided dosing guidelines for tamiflu for infants less than 1 year of age. Relenza is approved for individuals 7 years and older and comes as a dry powder inhaler.

In summary, all children with PWS should be vaccinated for both the seasonal and novel H1N1 influenza viruses. Remember to have our PWSA (USA) Medical Alert booklet with you at all times which explains the unique medical issues of PWS. It may be ordered from our web site at www.pwsausa.org (Medical Alert Button on the right) or by calling 800-926-4797.

Flu symptoms can include
fever*
cough
sore throat
runny or stuffy nose
body aches
headache
chills
fatigue
sometimes diarrhea
and vomiting*
*It’s important to note that not everyone with the flu (especially if they have PWS) will have a fever or vomit.

Emergency Warning Signs

In Children:

Fast breathing or trouble breathing

Bluish skin color

Not drinking enough fluids

Not waking up or not interacting

Being so irritable that the child does not want to be held

Flu-like symptoms improve but then return

with fever and worse cough

Fever (less likely with PWS) with a rash

In Adults:

Difficulty breathing or shortness of breath