SIOD is a multi system progressive disorder where T cell deficiency is only one component that is compromised in these children's little bodies.
Today Daddy took Emily for her IVIG (intravenous immunoglobulin therapy) start and labs for her immune system that she gets every 21 days.
Before COVID-19 we have taken precautions all of Emily's life. Emily was born premature and we had home precautions in place from the get go before she was even diagnosed with SIOD. Here are our health and wellness practices that we have instilled for her entire life and depending on what virus or season of illness presented itself, we would step up our precautions accordingly:
*remote healthcare
*wash hands with soap and water for 30-40 seconds
* avoid crowds
*limit public interactions
* wipe down knobs, handles, keys, remotes, phones
*change clothes after being out in public or after school
*shower after being out in public or after school
* Lysol purses, backpacks, bags
* wipe down steering wheels and doors handles
*wear masks in public
*UV light to clean controllers, laptops, keys, phones
*take shoes off at door
*limit visitors
The CDC states that, "serious underlying medical conditions (like SIOD) are at a higher risk for more serious complications from COVID-19", and we do not take that lightly as we have family members and friends as well who are immune suppressed due to cancer, transplants and other health issues that qualify them without being of the older population.
Children with SIOD, and really any chronically ill child, become resistant to effective strains of defense over time as they are used to these lines of medications in their medical journeys and therefore even a cold can be detrimental to them.
Gene Reviews/NCBI has a publication with Morimoto & Boerkoel (both from Canada during our initial research) Lucke of Germany and yes, Lewis from Stanford even before he took over the SIOD research from Boerkoel, where they talk about T Cell deficiency first published in 2002 and updated in 2016. "Immunodeficiency increases the risk of opportunistic infections such as pneumonia. More than half of individuals with SIOD have recurrent infections with bacteria, viruses and fungi. Infection is a common cause of death."
Read that last line again- INFECTION IS A COMMON CAUSE OF DEATH!
I have read that line for 12 years over and over again- it hasn't changed! Emily has had many bacterial, viral and fungal infections, despite best efforts and some more serious and detrimental than others and yet somehow has come out on top each time, which is good, however; this makes her even more resistant to any lines of effective strains of defense!
So- please- do your part and STAY HOME, listen and adhere to what the experts are saying we do and WASH YOUR HANDS! You may be fine and healthy, but the immune defenseless are not!
