Thursday, January 3, 2013

Medical Alerts from the PWSA(USA)

PWS families and those who care for someone with PWS, please read the following medical alerts from the PWSA(USA): 

Flu Season is Here -- What Should We Do? 

By Janalee Heinemann - Director of Research & Medical Affairs, PWSA (USA)

Here are some questions that have come to me at PWSA (USA) and answers from members of our Scientific and Clinical Advisory Boards

Should we stop growth hormone treatment when our child has a respiratory problem? 
There is no evidence that stopping GH during respiratory illness would have any benefit or not. Jennifer Miller, M.D

Although GH has been mentioned to be contraindicated in cases of SEVERE obesity and respiratory compromise, it does not mean that GH will worsen the symptoms of common respiratory illnesses; therefore I agree with Jennifer, GH should not be discontinued. Moris Angulo, M.D.

Should my baby get the influenza vaccination? What age should he/she start? 
It is still not too late to get the shot. The Hospitalists are saying this is similar to the year we had the H1N1 virus. The immunization rate in kids is about the same as last year. It is down in adults so it is important that both the parents and children get vaccinated. 

CDC recommends vaccine after 6 months of age especially in individuals at risk. All individuals with PWS would fit in the high risk category and should be vaccinated. There are circumstances where the individual needs two vaccinations delivered 4 weeks apart. James Loker MD 

All infants starting at 6 months of age are eligible for the flu shot. They will need a 2nd vaccine 1 month later as this is the first year they are being vaccinated. Younger infants can have some environmental protection if all adults with whom they come in contact receive the flu vaccine each year. As long as vaccine supplies are available, the vaccine should be given. This is different than the RSV synagis monthly for selected infants

Marilyn Driscoll, M.D. 

Question: Insurance is denying paying for Synagis to prevent RSV. Aren’t our infants more at risk for RVS due to their increased respiratory risk? Shouldn’t insurances be required to pay? 
Answer: Synagis is indicated for the prevention of serious lower respiratory tract disease caused by respiratory syncytial virus (RSV) in pediatric patients at high risk of RSV disease such as infants with bronchopulmonary dysplasia (BPD), infants with a history of premature birth (≤35 weeks gestational age), and children with significant congenital heart disease. All other use would be considered off label. Synagis costs about $1,000 per shot every month during RSV season. Insurance companies do not like to pay for an expensive medicine that is used off label. It is possible that if the cost comes down we may see more off label use of the medicine. It would take studies that would show not only safety of the shot but also a significant benefit to convince drug companies to lobby FDA to include PWS in the indications. With the small numbers of infants with PWS it would be difficult to demonstrate a significant benefit. We need to keep an eye on this, but in the meantime we need to emphasize good hygiene in all infants with PWS. RSV is spread by contact. Parents need to wash their hands and use alcohol cleanser to reduce not just RSV but all infections in infants with PWS.

James Loker, MD

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