Chris, RSV Shots, with what information can a parent approach an Insurance Company to better the possibility of Qualification after 2nd year of life?
Chris, RSV Shots, with what information can a parent approach an Insurance Company to better the possibility of Qualification after 2nd year of life?
My name is Christina, I am Mother to 4 children. My 3rd child, Hunter was born, full term and survived LCDH(Left Sided Congenital Diaphragmatic Hernia), ECMO (extracorporeal membrane oxygenation Initial replacement of missing diaphragm with synthetic patch,Breathing Machines,Stroke,No Pericardial Sack,RSV,Repair to diaphragm Patch,Bowel Blockage,Bowel Reconstruction,Months of IV antibiotics,Lovenox Shots to dissolve blood clot in heart,Low Weight and Size,Still eating by G-Tube and Physical, Occupational and Feeding Therapy Daily.Through all of this, he looks at me and brightens every room with his smile! Overall,Hunter spent 45 days in NICU,several other hospital stays and approximately 10 surgeries.He has 2 Big Sisters,Danielle 20 (Dating a CDH Survivor),Codee 16,and a baby Brother,Hayden 2. Hunter's condition,in a weird way, has made us stronger as a family and has taught us lessons we will never forget! I wanted other families to know that there is someone here for them, someone that they can depend on and a little boy that can provide some light in the darkness of CDH.
Christina Smith-Stembler
Washington State CHERUBS Rep/ Oregon CHERUBS Co-Rep/ Mother to Hunter, LCDH Survivor
washington@cherubs-cdh.org
www.cdhsupport.org
425-922-2828
www.babyhomepages.net/stembler
https://www.facebook.com/#!/christina.s.stembler
Hi Dawn,
Actually albuterol is a bronchodilator, not a steroid, and it is fine to give immunizations with albuterol. Also, for children on inhaled steroids like Pulmicort, Flovent, etc, it is perfectly fine and recommended for them to receive immunizations on schedule.
Excellent question. Getting RSV vaccines covered by insurance can be difficult, especially as the children get older. The vaccine is extremely expensive, and has to be given monthly during the RSV season. I recommend talking with your child's pediatrician's office to see if they have a RSV vaccine coordinator who can help work with the insurance and vaccine companies. Best of luck!
As the parent of a very complex CDH kiddo (16+ yrs old, who lost a large portion of intestine both small and large as an infant due to NEC) we were told that he is not allowed to have any live vaccines. I asked at his most recent appt and that is still the case, per his surgeon. When Sean was a baby he also suggested it would be prudent to consider doing just one vaccine at a time rather than doing them as typical babies, several per visit, even if that meant delaying some of the vaccines a little bit. What are your thoughts on this?
Hi there,
I would do as your surgeon recommended. In general, we recommend getting vaccines done per the recommended schedule. Many vaccines have a range of ages during which they may be given. In a complex case like your son, sometimes variations to the schedule are permitted.
as the parent of a now adult 22 yearold surviour what about the guardisil shot for girls does she need it or not
janice crawford mother to angel crawford right sided cdh numerous feeding issues 1 additional repair at 1 club footed develepmental issues never on chart for weight but doing very well now at 24 years old expecting her 1st child
With the large amounts of blood products some of our Cherubs sometimes need (especially during ECMO) and the frequent in & out of the hospital, are Hepatitis A and B vaccines warranted & if so when?
Shelly
Shelly Moore
CHERUBS Oregon Representative and Oregon Hospital Angel
CHERUBS Prayer Committee Member
CHERUBS Parental Advisory Board Member (2013-2015)
Email: oregon@cherubs-cdh.org
Facebook: http://www.facebook.com/Teckiemom
Grandmother to cherub angel Jayden, the only son to my born to youngest daughter, Alicia.
Jayden was diagnosed with CDH at his 17 week ultrasound with severe LCDH, stomach, intestines up as well as having polycystic kidneys. He was born February 19, 2010 at 36 weeks gestation.
Jayden spent 7 days on ECMO after which he was working on gaining strength for surgery when his polycystic kidneys started failing at about day 15, totally failing by day 19.
Jayden spent 4 days on dialysis before gaining his wings on March 14, 2010 at age 23 days.
Remembering Jayden - A Family's Journey in Coping with Loss to CDH
http://rememberingjayden.blogspot.com/
Jayden's CDH Story 2/19/10 - 3/14/10
http://www.youtube.com/watch?v=0fKsAsMS_ZA
Good question. Especially for children who are exposed to blood products, and even those who aren't, Hepatitis B vaccine is definitely recommended. Hep B is a 3-dose series that can be started as soon as the child is born. Hepatitis A is spread through food and fecal to oral contact. It is also recommended to get the Hep A 2-dose series after age 1 year.
Here is a link to the CDC's recommended vaccines for adults. Figure 2 "Recommended vaccinations indicated for adults based on medical and other indications" has a column for "Chronic Lung Disease", which would apply to many Cherubs.
http://www.cdc.gov/mmwr/preview/mmwrhtml/su6201a3.htm