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 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!

Newest Update

Journal entry by Theresa Martin

Thank you all for your prayers! (& thanks for your patience in my updating! So many have reached out since I hadn’t updated yet, and that just warms my heart…)

So, Wednesday morning we left the house super early to be in Mpls for 9:00 appointment. These appointments were at the eye clinic. Even having to schedule these appointments in Mpls was emotional, because we normally have had their eyes checked right here in Winona. Yet, last year our dear doctor passed away and the clinic didn’t replace her. So, having to schedule these appointments during our trip to Mpls just made me sad all over again.

Thankfully, the clinic made it really easy and found appointments during the time we were already there at the UofM Children’s Hospital/ Fairview Health clinics…

Little did I know just how much I would enjoy the eye clinic there! 

Louis was supposed to be seen first and then we’d go across the street for Emmanuel’s pulmonology appointments and then come back to the eye clinic after lunch for Emmanuel and Damian’s appointments.

Once we got Louis checked in and we’re discussing things with the nurse she said “I bet we can do them all right now!” She left and came back in with another nurse and a big smile. They were going to work all the boys into this time slot so that we wouldn’t have to come later.

The nurses were quick but still friendly and then the doctor came in. He noticed Damian’s New Orleans Saints mask and asked why he wore that. I explained that I’m from New Orleans & he said “I’m grew up in Metairie.” I laughed and said I actually did, too, but no one knows what that means so I just say “New Orleans.” Long story short, he was at Jesuit High School with one of my brothers! He was already super friendly but became even more friendly meeting someone “from home” all the way up here in Mpls!

He explained that the boys all had a crowded optic disc and it isn’t inflamed, but could look like it was if someone didn’t realize the condition. So, then he said we’d do a scan on each of them to get a baseline as we move forward. Then he asked to look in my eyes! He was curious to see if the crowded disc was hereditary from me. Apparently, it is. 

So, they are scanning all the boys and the clock is ticking away… Emmanuel’s pulmonology appointment was at 11 and it was 10:55. They were finishing Louis’ scan up right about 11 and then gave the kids snacks to take with them. (Very sweet of them!)

We hustle to take the elevator down and walk over across the street and up those elevators to check Emmanuel into pulmonology. The check-in person was very kind and understanding. Even though we had to hustle, it was relieving to know we didn’t have to go back and could be done for the day after pulmonology!

We walk over to the breathing test waiting area and the nurse is in an adjoining room putting on her hazmat suit. (Seriously, she has the look of a grandma and sees us and begins suiting up. She puts on yellow pants over her pants, then a yellow shirt that tied in the back like a hospital gown. Then she puts the surgical booties over her shoes. Then she tries to make a joke with Emmanuel and he is not amused. She then puts on latex gloves and then a mask and then a face shield. And then a second shirt thing. Then she looks our direction and says “I think we’re ready!”)

Emmanuel didn’t mind the breathing test and he was determined to do his best - and boy did he!!! Apparently, he did amazing and beat his personal best! She kept trying to make ‘dad jokes’ with Emmanuel, but he was very focused (and it’s hard to connect with something behind a hazmat suit!).

She said we could be done without the other tests, because he did so well on that one.

So, we are escorted over to the nurse station in pulmonology where the nurse then took us in another room where we waited for the Dr.

This room was a suite of a room and Emmanuel decided to enjoy the old recliner in there while he waited. Damian rediscovered he had a harmonica, which was just lovely when you are trying to think and not cause a ruckus of a scene in a public place … that’s me being sarcastic, if you couldn’t tell.

Dr finally came in and was so delighted with Emmanuel’s tests! She spoke about how we finally have the asthma under control. This does not mean that it’s cured or anything but that our plan has worked. So, we continue with current meds and emergency procedures, but she’s happy with his lung capacity and doesn’t need to see him for a year! Woohooo!!

It was almost 1pm at this time and so, we walked down the street to Davanni’s for lunch and the boys started to unwind. 

They played cards and plotted at the table - what they were scheming, I have no idea. I was kind of just taking a deep breath myself and trying to get through. (I was operating on low iron and Hgb. I had an iron infusion scheduled but not until Friday. So, at each moment, I had to force my exhausted self to take one more step and then the next and then the next…)

We drove over to the closest Walmart to get a few things to eat for dinner (because once we get to the hotel, I knew I wouldn’t want to leave again!).

Then, we finally arrived at the hotel! We checked in and spent the first 30 minutes just chilling in the room … or at least I did! The boys were pacing the room waiting for me to take them to the pool. 

Finally, I muster up the strength and we head down to the pool - where they stayed for the next two hours! They did convince me to go in the whirlpool with them and it was relaxing (although I’d prefer just sleeping at that point!).

It was actually the boys who got tired of being in the pool… so, I guess I let them stay long enough! Their fingers were definitely all shriveled like raisins!

We went back upstairs and watched movies and ate some dinner. They had a hard time settling down, but eventually everyone slept…

It was another early morning the next day! Everyone was up at 5:30 and we had to be down eating breakfast soon after 6, because we had to be packed up, checked out and on our way back to the hospital by 7:30.

At breakfast, the friendly hotel kitchen staff was the same woman who had been there the last time we stayed in December. She remembered the boys and was so very friendly as always! She jokes with everyone like you were her best friend and lived there all your life. She asked the boys about the eggs and then made a comment about it being better than … we had no idea what she was talking about, something they had last month, but she laughed and laughed and the boys laughed too, just because she was so delightful.

Back in the room, we’re packing up and the boys get sucked into watching “Peter Rabbit” on tv. Movies on tv always take longer because of the endless commercials … which I kept reminding them as they asked to finish watching “just this part!” Needless to say we were about 15min behind schedule when we left.

We arrived in rheumatology (where their specialty Dr is) and all was well. (And guess what? After checking all three boys in, I go to the waiting area and realize that they figured out how to bypass the channel lock and switched the tv in the waiting area to Peter Rabbit! Clever.)

The nurse calls us back and begins doing vitals. Then we are taken into a (rather small) exam room. But the boys immediately pull out their hidden toys and cards and make themselves at home.

Dr C comes in finally and we begin to go through each kiddo. She was also impressed with Emmanuel’s breathing scores and also, what this allows us to see is that now anything that’s left unknown must be from another source - like his rare disease (CAPS/NOMID).

He was complaining of headaches and joint pain. She did say in the examination that he felt inflamed. She wanted to do an X-ray of the hips to be certain there wasn’t any problem and give us a baseline. She’s also increasing his meds.

Damian was a similar situation. Excessive pain in the joints and she wanted an X-ray and increased his meds.

Louis is holding steady! So, his dose will remain the same and she was just really overall impressed with Louis. We even showed her a clip from his violin performance and she was so proud of him! We’ve been going to her since Thérèse was a baby - so that’s a good 5 years! And you can tell she just loves our boys like they were her own. She’s such a kind and personal doctor.

Even as Damian kept trying to “sneak” play the harmonica, she would just laugh and say “that sounds nice!” And I’d just stare at him … I’ve reached that age where I can’t think well with extra noise. So, he’d see my eyes and put it back in his pocket. Then he’d take a few steps and play it again!! It’s not like you can hide playing a harmonica in a small exam room! As he’s walking towards the door, I saw something hanging there. “Emmanuel, is that yours?” Emmanuel says, “yeah, captain America lost a fight with Thor and Thor strung him up there.” 😳 They cope with all this nonsense, by living in a different world in their imaginations during it!

After her visit, we went to do labs. Then, down to radiology. I was starting to lose control of the rascals at this point. They kept quoting movies in their mashup nonsense (they take several movies and mix up quotes and interactions to make a new funnier story) and in the different realm of reality that they existed at that moment, heroes were jumping off of walls and around the feet of people walking through the hallway!  I’m like “sorry! Please excuse us!” as the boys are completely oblivious to others and at the same time pretend to have their action figures jumping off strangers’ shoulders and through walking feet. I’m all “please get off the floor … people are trying to walk … keep your hands to yourself … stop touching every wall! … shhhhhh!!!” to no avail … they weren’t being disobedient as much as they really were sucked into their imaginary realm and my words echoed probably like a distant rumble and they didn’t hear me…

I managed to get them into the next waiting area and check them in at the radiology desk. They discovered a pretend CAT scan machine and proceeded to put one of their stuffed animals into it …

Damian was first for the X-ray and they ask about metals and whatnot, but he wasn’t listening. X-ray tech was like - “now, are you sure there’s not anything metal in your pockets?”

Damian pulls out the harmonica! 😂

The tech was like “well, yeah, that would show up on the X-ray!”

When it was Emmanuel’s turn, he pulls out all kinds of trinkets, springs, broken old camera, his pockets are bottomless … I’m just standing there shaking my head and the tech just laughs. I think that’s the most he had seen someone pull out of their small pockets!

And … done! We gather up our things and head out of the hospital. But it’s only 10:30… so, we still decided to go to Davanni’s but we’d take it “to go” and eat it on the way home.

We never thought they might not be open yet! So, as we stand there in front of the locked door, trying to decide what to do, the gal who works there came to the door. She had recognized us from yesterday and said, “just wait a few minutes and I can open up for y’all!” so sweet …

So, we wait and then place our order and wait again …

By the time we were actually leaving with the food, it was well past 11 anyway.

And we got in the van and headed home.

All in all it was a very positive couple of days! Emmanuel’s asthma is under control, which allows us to better treat his CAPS. He and Damian are getting the higher dose they need and Louis is growing like a weed - 5’8”! 

It’s always stressful to go through these appointments, but UofM/Fairview Health clinics and the particular doctors we see are just fantastic. We are so blessed to have such a good team taking care of us! And now add to that an eye Dr from my hometown!

And there were no “new concerns” which is a relief! Plenty of continuing concerns to keep me occupied - but it’s nice when it’s a “stay the course” appointment and not a “here’s your new ‘new normal’” appointment!

Phew! (And we’re grateful to have secondary insurance - we’d be in loads of medical debt otherwise …)

Thank you, Jesus, for all our blessings!

Thank YOU all for your prayers, love and support!

St John Paul II, pray for us!

Ps - I did get my iron infusion on Friday and all went well!

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