How To Cross the Street.
his dr.s and i have known for a while that things just aren't adding up like a "typical" multiple food allergy child with 'lou.
he's never outgrown any of his food allergies.
he can't be on a rotation diet as he becomes allergic to anything new, as opposed to eating the same few things for years on end.
he only seems to grow when he has a big flare up -and even then it's not enough to get him close to being on the charts.
he has a huge flare about once a year and begins reacting to even the very few foods we can eat.
he doesn't get better or worse at any particular time of year.
despite all of his horrible food allergies, he's not developing asthma or a runny nose or itchy eyes or the usual signs of seasonal allergies that most of these kids add on around his age. (almost 5 now).
but this past february, things got worse. his skin was so badly broken out, he contracted strep pyogenes throughout his skin and had to be hospitalized. he starts breaking out in hives just from sitting on carpets or furniture with fabric coverings. just before his hospitalization in february, he stopped sleeping at night. we were lucky to get 2-3 hours a night before he was awake, scratching and crying until he was bleeding. i've taken to buying special jammies for him with covered hands and feet that button up the back so he can't get them off. his IgE has inexplicably shot up to 12, 552 from the 1,800 range. (normal is 0-120).
he's finally started sleeping at night more during a brief remission of his symptoms for about 2 weeks now, giving me a chance to update. it's been absolutely shocking how fast things have deteriorated. the harrowing duty of witnessing my child endure this insufferable itching and burning that just consumes him has had me feeling like i'm living in crisis mode for over 3 months now. i still pick up the kids from school, make dinner, fold the laundry, chat with the neighbors, but inside i feel like i'm ready to just shatter. i feel like i'm always on the verge of tears.
'lou is amazing, he still gamely tries to play with one hand while he frantically scratches w/ the other. he still gets outside and rides his bike and runs and plays for as long as he can, until the itching overwhelms him. he says the closer he gets to flying, the better it feels on his skin. he ties on anything for a cape, jumps on our swing set and stands on a swing, pushing himself higher and higher to make the wind rush all over his body and through his hair. this is the only time he magically transforms into a completely normal kid. when the swinging is done, he hides and scratches and cries until one of his brothers or sister come and get me and i carry him in and make him take a green tea soak. water burns him like fire now, shea butter, olive oil, coconut oil, cocoa butter - all of it makes me feel like i'm abusing him to rub it on his wrecked skin. sometimes he starts crying and when i ask what's wrong, he says, "i don't know - i'm just sad - i don't know why." and my heart absolutely breaks for the fact that he has such a huge burden for such a tiny guy. i can't let myself think about the future. we're trying to just get through each hour, then each day. i can't imagine him living this way until he's a teenager. what would this kind of constant pain do to a young person's personality, social life and goals?
i try to find ways to distract him and cheer him up. he saw another child drink a slurpee recently and was mesmerized by it. none of my kids has ever had one, so i made a pitcher out of elderberry syrup and ice. he drank until he got his 1st brainfreeze and then begged to nurse to cure it and then did it all over again.
his dr.s are awesome, but nobody has ever had a patient like him and nobody has the time to stop seeing all their other patients to give time to focus on 'lou and research and contact other experts and try to figure out what else we could try to help him. i've gone to so many of the top dr.s in our state that our office visit copays are fast becoming one of our biggest bills.
We're going to start UV light therapy for him soon. he's on major (corn and allergen free) antihistamines, but they don't do a thing for him. We're probably going to try the modified Goeckerman therapy to put him in remission so he can start school like he's supposed to in the Fall. There's a miracle drug for kids like him called Xolair for 12 and up. One of his Dr.s hopes to get him approved for it. All of his Dr.s agree that there must be some sort of underlying genetic disorder here, it's just not one anyone here is familiar with.
So, just when i was at my most disheartened and frightened and hopeless and exhausted, his Dr.s decided it was time to send him to a specialty hospital out of state. We considered the Mayo Clinic or Johns Hopkins and finally ended up deciding on National Jewish Health. We're still going through registration right now for an appointment by the end of Summer. I'm hoping to be able to post daily blog updates of his treatments and tests, to help any fellow severe allergy readers.
A friend started a fundraising page for our trip there and I discovered the meaning behind the saying, "It takes a village to raise a child." My husband and I pride ourselves on being able to raise our family without asking a lot of help of others. We don't use babysitters or rely on others to help with raising our kids much. this is an achievement we're proud of, but it can also make me feel even more isolated than getting no sleep and being cut off from any normal societal food-centered activities does.
i was sitting in the allergist's office with him, watching helplessly as the hives started popping up on the backs of his legs from sitting in the fabric-covered chair. i'd forgotten to put him in long sleeves and pants before we left the house as usual because it was a 96 degree day. we went outside to get away from the furniture and await our call in to an exam room and i remembered the page my friend had set up. to my amazement, it reached our goal of $3,500 in just 48 hours. and people are still leaving donations, even after we reached our goal so quickly!!
the comments that people left, the emails and texts that I received, all let me know how badly people have wanted to help for a long time now, but didn't know how. one woman told me, "it's not like we could cook a dinner for you and bring it over!" total strangers have donated, saying that 'lou's bravery and spunk are an inspiration to them. it has been one of the most healing and gratifying experiences i've had in parenting 'lou since i've felt the support system we had shrinking away as his illness isolates us even further. i think i treasure the comments every bit as much as the financial aid that comes with them. i feel like we are going to Denver renewed and reinvigorated to explore every potential treatment for him. and i feel like i'm going not just with 'lou, but with his own village. thank you from the bottom of my heart. ~jack