Louis’s Story

Site created on October 26, 2010

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 his immune system never shutting down until exhaustion and flooding his little body 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: baby 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 is a drug (Kineret) that Louis, and now his brothers as well, were taking through a daily injection 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.  They have since switched to a medication (also an injection) that lasts a little longer in their bodies. But there are drawbacks to this as well. 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. :-) 

Newest Update

Journal entry by Theresa Martin

Well, yesterday was exhausting but we are home now and I’ve had time to recover - so now I can update calmly.
I forgot to tell you one of the best blessings we had after the appointments Thursday morning!  As we were waiting to be called for the lab draws, I heard on the loud speaker that they were having Catholic Mass in the chapel!  This is new, & I thought well, it’s in 20min, maybe we can make it??  Long story short, we finished labs and potty breaks & still found our way to the chapel (although we were 3 min late).  It was a tiny chapel and the priest was already preaching the homily!  (Daily Mass can be fast - lol!)  He invited us in and one gentleman moved so we could take up the front row.  (There were only 2 rows, total of 8 seats. Although there was a man in a wheelchair there - so 9 people at the Mass.). The priest asked about us and finding out that all theee boys have a rare disease, he changed his homily.  He looked at them and said “do you know the very best thing about you?  The very best?”  They just kind of smiled.  “Jesus loves you!” he said.  He then proceeded to talk about how special they were that Jesus loves them so much.  It was a surprisingly moving Mass in a little non-denominational “peace chapel” with fish and water pictured across the walls and nonstop twinkling lights on the ceiling.  And it was over in 15 minutes!  (Which was actually nice because I wasn’t sure how long they’d last!)

So, that was Thursday and after I posted the update Thursday evening I was able to get some rest.  That is, until 3:30am when Emmanuel came in with a full blown asthma attack.  I had his meds and we got it calmed down after a little bit.  He stayed in the room I was in and slept on the chair (his choice).  Poor kid looked miserable the next morning!!  His eyes were red, bloodshot and puffy, but at least he was breathing well again.

We had a lovely breakfast with our host family (always so kind and generous to us!!), and then off to audiology.  Damian had a difficult morning and it seemed everything was setting him off.  He sobbed into my shirt a number of times.  But the audiology staff was accommodating and kind.  

This time, Emmanuel gets the positive report - his hearing is perfect!  Louis has reduced hearing at the higher frequencies that we had seen previously but hoped would improve.  This is another reason we want to really get a better handle on the disease so that we can avoid further damage.  Damian had negative pressure (they said probably from a head cold or something) and it did affect his hearing test, but no damage was seen in the function of the ear drum or inner ear.  But if he’s not hearing as well, that’s why.

Most of the conversations with the audiologist were around preventing damage and her affirmation of getting the disease under control.  

So, we leave it at that for now!  Dr C will be (hopefully) connecting with NIH for advice on how to be more aggressive, Emmanuel needs to see an allergist, Louis needs to get therapy to deal with the medical trauma and emotional paralysis it seems to cause, and all theee of them need PT for their fine motor skills.  (Dr C had reviewed the neuropsych final prognosis and that was all part of it.  Slacker mom hasn’t set those appointments up yet.  And that’s just me avoiding ... because you know how much I like adding extra dr apts to our schedule!) ;-)

Thank you all for your prayers!   We keep going forward - many questions unanswered but we work to make life better in each moment. ❤️
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