Hello! Welcome to Louis' personal website! (Though I think it will be more therapeutic for his mother than for him!) UPDATE: Two of Louis' brothers and his father now have been positively confirmed to have the same exact disease, NOMID. It's been an on-going journey - but Louis opened the door to everyone else's healing. Thank you so much for your love, support and especially all your prayers!!! To get the background on Louis' disease, NOMID, severe level of CAPS, please read his background story. Click "read My Story"
Louis (French pronunciation: "loo-ee") was born on October 24th of 2006, on the 25th his little body was covered with purple and red blotches that covered his whole body except his belly.The doctors were baffled and even took pictures to document this apparently very rare occurrence. The colors faded and he seemed fine, though they never fully discovered what caused it. His body did flare up in little hives pretty regularly, but he didn't seem to mind. And except for a LOT of spitting up, seemed like a normal baby. After all, what baby doesn't spit up? But it never stopped, even after he began eating solids.
To make a long story short, after 4 1/2 years, SEVERAL misdiagnoses, and many long nights, Louis was diagnosed with NOMID (Neo-natal Onset Multisystem Inflammatory Disorder) or severe CAPS. When we began this, they thought he had Mastocytosis. So, you'll see that reflected in the journals. I guess "journal" is the right word for it is a JOURNEY we have been on. (Update: You will also now note that two of his little brothers have the EXACT SAME DISEASE. :-/ His father also has it.) NOMID is a very rare disorder (odds of getting it are one in a million). Guess our Louis, Emmanuel, Damian and their daddy are pretty special!
Basically the disease is their immune system never shutting down until exhaustion and flooding their bodies with tons of inflammation. Louis has headaches, pain, fever and vomiting which is neurologically based, from chronically raised intracranial pressure, that comes from chronic aseptic meningitis. Without medication, he gets those night-time vomiting episodes 2-3 times a week. Other daily symptoms: light sensitivity, great discomfort, very irritable, excessive thirst, painful joints (swelling, pain, inability to walk), short stature (he was not even on the growth charts for his age before medication - now is at 15%), hoarseness due to inflammation of the laryngeal cartilage. And of course skin rashes which occur in 100% of the cases. (you can see pictures in the photos section)(Update: Damian had the same symptoms as Louis, but we were able to catch it right away, which is great because we prevented the worst parts. And Emmanuel started showing signs at 2 years of age, just when it was getting worse, he was able to get the medication he needed.)
There are also many symptoms which are progressive so they will all have to be checked to watch the progress of them all. Such as: potential physical and mental retardation (thankfully this has so far passed him by!), hearing loss, eye problems, liver and spleen issues. (Another statistic: 20% of patients do not reach adulthood because of infections, vasculitis & amyloidosis.) His hearing, eyes, liver, spleen and the neurological stuff will have to be tested continuously. There are two drugs (Ilaris and Kineret) that Louis, and now his brothers as well, are taking through a an injection (Ilaris bimonthly and kineret biweekly) and for a while Louis was doing tremendously well with it, though his stability was compromised by the slightest illness. His brothers had shown great improvement as well, though every illness causes flare ups and constant evaluation. It’s a daily evaluation - and apparently onset of puberty is now making it worse. Please keep praying! Enjoy reading Louis' journey! He now shares it with his brothers, each of them are definitely one in a million! We love our Damian and Emmanuel! And we love our Louis! (Louis says he has healing power because if it weren't for him, his brothers would be really sick because they wouldn't know what it was. So he says he healed them, since through Louis they got medicine right away. :-)
There are constant medical costs accruing through the tests every three months (some are more expensive than others like: bone density scans, MRIs, LPs...). Anything you can give to help the family is greatly appreciated!! Though we mostly ask for your prayers!
You know we all have our days ... we have our challenges and our own sufferings. So, I think when there is a bit of sunshine, you just have to share it!
Today, I spoke to a new social worker with the U of M children's hospital. Her email made it seem like she needed to ask me a thousand questions per child. They have accommodated us before with a one or two hotel room stay since we have so many appointments. I was attempting to set this up again for July, when I was directed to a new person with whom I needed to speak.
If you have any experience with medical issues, you know what stress can be caused by throwing one thing out of order - especially when you're juggling so many things at once!
She did pepper me with questions, but in the end was kind and helpful. She also sent me an email within the hour after our phone call confirming the hotel accommodations for this summer and making sure we were at the hotel with the pool (at the boys' request).
It's just nice when something works out well and in a timely manner. You just feel cared for - like a God hug in the middle of a hectic day,