IVIG Therapy Helps Keep Louie in the Game
It’s safe to say athletic excellence run in Louie’s family. With a dad and a brother who played football for the University of Minnesota Gophers, a mom who swam for them, and a brother and sister who also swam in college, it’s no surprise 16 year old Louie inherited those genes too.
When he isn’t busy watching Gopher football (attending all the home games and bowl games for the past 5 years while his older brother played), Louie is busy playing baseball for his travel and high school teams. Did we mention he’s also a straight A student?
With such an active life, you wouldn’t expect that Louie spent a lot of his childhood in the hospital and doctor’s offices, trying to identify the cause of his extremely poor immune system and increasing food intolerances.
Illness despite precautions
When Louie was born slightly premature at 36 weeks, he had a few minor issues and a slight heart defect which his parents were aware of prior to birth. Knowing they would need to take precautions to keep Louie safe during his first months, his mom Paula (who is a nurse at a children’s hospital) enforced germ control for the household – but he still managed to come down with pertussis, pneumonia, and bronchitis.
“It was very odd that he was getting sick because we had really strict rules,” remembers Paula. “We made our three older kids change clothes right when they got home, and I never took him anywhere or let anyone come to our house – I was an absolute freak and he kept getting sick. So we knew something was wrong.”
Looking for answers
By the time he was 1 year old, Louie also developed food sensitivities that were leaving him with few options for nourishment and thousands of rash-like bumps all over his body. While doctors were trying to understand what was causing these symptoms, they determined he had intestinal mal-rotation and would need multiple surgeries, which ultimately led to a large section of his intestines being removed.
But Paula and her husband Steve were still looking for an overlying reason behind their son’s lack of immune system and food sensitivities. Finally, after intensive tests, they found an answer – combined variable immune deficiency syndrome. They immediately started giving Louie regular IVIG (intravenous immunoglobulin) to improve his immune system functionality.
“Slowly, all of his food allergies and sensitivities went away over a period of 4 to 5 years,” says Paula.
A seamless care plan
Until Louie was about 5 years old, family members had to bring him to the hospital for IVIG administration every 3-4 weeks. He was eventually approved to receive care from a home care company, but Paula was frustrated with the fact that although she was a nurse who was qualified to administer IVIG, insurance wouldn’t approve for her to do the infusions for her son. Adamant about being the only person who accesses Louie’s port, she has proven to be quite successful with it, considering he had the same port for over 12 years before having to have it changed due to its size.
“Even when Louie is in the hospital, no one else accesses him – I’m the only one he does,” Paula mentioned.
After having trouble with their initial infusion company, Paula was referred to PHS and was soon approved to administer the PHS-supplied IVIG herself, with infusion nurses coming to do labs. With all of his care happening at home, their family has been able to lead completely normal lives ever since – just slowing down one day every 3-4 weeks to administer IVIG.
“Everyone’s got something they need to do. Not always medically, but something in their routine they need to do to take care of themselves,” said Paula. “This is just one thing he has to do once a month. He does it, and moves on, and it makes for such an easy transition for a boy who’s trying to be as normal of a high schooler as he can be.”
With such a busy school and sports lineup, infusions are able to happen around Louie’s schedule.
From constant illness to calm strength
During his years of IVIG treatments, Louie has grown into an independent teenager who understands how much this infusion therapy improves his ability to lead the life he wants to live and just sees it as another part of his busy schedule.
“You look back and think, how could he have been so sick all the time?” remembers Paula. “And now we pick him up from baseball and he’s smiling and just such a joy – he’s so strong and confident. I don’t know that a lot of adults would even be able to go through all of this and have the strength Louie has.”
Beyond high school
The latest conversation at their house? College. Because Louie runs into issues with cold weather due to his immune deficiency syndrome, he may look at colleges in the southern United States and arrange a plan to get IVIG treatments in college.
And collegiate baseball? That’s to be determined. But Paula is sure of one thing – he’ll succeed no matter what route he goes.
“We say that he’s going to be the one who comes through just blows his siblings out of the water – they are all competitive with each other, but Louie will just shock everyone.”
With his calm, confident, and determined personality, we believe it.Originally published: April 13, 2016