Pray for Landon – The background and updates of Landon Douglas’ medical journey.

Hi, thanks for visiting!

We have had several people ask about an avenue to donate to us as we go back to Mayo for this program. We estimate that it will cost $8,000 or more for housing, gas, expenses, food, etc. for Landon to attend this program. We so appreciate your prayers and we invite you to keep up with our updates on the “Updates” page!

If you feel led to donate, you can click the button below to donate via Venmo.

Below is the story of all that Landon has been through medically which has dominated the last year and a half. We appreciate your prayers and support throughout this whole trial. The Lord has been gracious to us in so many ways but Landon is still struggling. The Lord has always been faithful to us though so we trust the Lord to accomplish what he wills throughout this no matter the outcome. Read as much as you want of all that has happened and send us a message at the bottom of the page to let us know you’re praying!

Beginnings

In early 2023, Landon had a pinched nerve from a rib out of place that caused lots of pain and the doctors were thinking lymphoma and other things because all his scans were clean but some of his blood work was slightly off. Landon was working a super stressful job (70-90 hours per week) in addition to his part time youth pastor job and was suddenly laid off 8/17/2023 from the job as a web developer. The Lord was gracious and Landon started a new job in September of 2023 that was a work from home job as a paralegal and web developer. Landon and his wife Rachel moved into a new apartment in October 2023, and he began having hearing loss and severe ringing in the ears shortly after in November. Landon was using OTC hearing aids by December.

Things got serious very quickly.

Landon went to the doctor at the end of January 2024 and there was no obvious reason for the hearing loss, so the doctor referred him to get a hearing test. Landon began to get dizzy and nauseous right after this, he thought it was a stomach bug but it stuck around, and it wasn’t severe. On the day of the hearing test (2/9/24), Landon began to get dizzier and more nauseous so everyone figured it was simple vertigo. Landon’s hearing test showed some minor hearing loss though nothing super significant. The dizziness and nausea got worse so he went to a walk-in clinic and they ordered a CT to check for stroke because there was some difference of sensation on his left and right sides. One side felt slightly duller. At about 12:15am on 2/10/24 Landon began to get a headache and it continued throughout the day and Advil did not help it. The next day (2/11/24) he took a nap about 4pm and heard this super loud humming while he was sleeping that sounded like a tornado siren (but no one else heard it) and it spiked his head pain to become a full migraine. This event began the sensitivity to light and sound as well as much more severe head pain. Landon had the CT scan about two days later and it came back clean showing no stroke or anything. He worked with his doctor to try and figure out what it was.

Pain that never stopped.

Landon also went to the ER because the migraine never stopped and he was constantly at an 8-9 pain level and the symptoms were concerning. He was given meds, told it might be a while like 3 weeks until he felt better, and told to follow up with his doctor. Landon’s doctor thought it was vestibular neuritis and gave meds to help with all of the symptoms. He continued to work with my doctor to find meds to help. Landon’s doctor thought it could have been an excess of spinal fluid in the brain but couldn’t order a spinal tap and said he needed to see a neurologist. He referred to a neurologist and by the Lord’s provision was able to get in within 2 weeks on a cancellation. He went to the neurologist on 3/5/2024 and was given meds to help with the migraines. Landon had one day where the pain decreased down to like a 1-2 pain level but the next day he was back to an 8-9 pain level. He went to the ER again and there were more tests and more medicines tried out. His doctor did lots of blood work including for Lyme which was positive but none of the proteins came back so they said it was just a fluke. Though several weeks later his doctor finally tried to treat Lyme because it fit the symptoms.

Trying to get the spinal tap ordered.

Trying to get a spinal tap ordered.

Landon’s doctor also went to bat with the neurologist after having CT scans and MRIs that came back clean and the neurologist would not order a spinal tap with him still having terrible pain. He was also so dizzy at this point that he was using a cane to help him walk as well as using the walls and things to steady himself. The neurologist sent Landon to an eye doctor to check the pressure on his optic nerve because if it was high he would greenlight the lumbar puncture. Landon’s optic nerve pressure was a tiny bit high but it was not a significant amount. He also had blind spots in the lower two quadrants of his vision that continued to show up even with a repeated eye test. The neurologist told Landon based on the results that it was his astigmatism was causing the problem and to get an updated prescription. Landon got his eyes checked regularly and have known of the astigmatism since he was 13. The neurologist also ordered vestibular PT and the physical therapist could confirm it was not vestibular. After Landon’s doctor spoke with his neurologist, the neurologist finally (begrudgingly) agreed to the lumbar puncture, though he just ordered spinal fluid studies and pressure gauging. There was a flub on scheduling on the hospital’s end through the Lord’s providence and so while he waited another 3 days for the test to take place, we asked if there were any other tests that could be added to the lumbar puncture since it was happening. The neurologist added a meningitis pathogen test as well as several other tests. Landon stumbled around by this point and was struggling even while using a cane because everything wobbled when he looked at the world.

The spinal tap and the first hospital stay.

Landon had the spinal tap and was sent home on a Friday. The results came in later that day and they had found Strep B meningitis but there was only 1 White Blood Cell in his spinal fluid. Normally there are hundreds if not thousands of WBCs when someone has bacterial meningitis. He began to have severe pain over the lumbar puncture site the next day so the doctor on call told him to go to the ER. After waiting 15 hours in the ER he was admitted me because the ER doc thought he had some kind of infection and was initially put me on heavy antibiotics. They thought the Strep B was a mistake but it would have a culture run since he as positive. Landon also had more MRIs on his head but they came back unremarkable. Infectious disease looked at the case and they said that it appeared it wasn’t a mistake and sent off cultures. Landon received nerve block shots in the head while in the hospital. It was an immediate fix temporarily. Landon was released from the hospital after about a week and sent home with IV antibiotics for 7 days.

Antibiotics and the second hospital stay.

Landon finished the antibiotics and had a follow up with infectious disease. Infectious disease said the cultures showed that he had meningitis at least 2 weeks and he would have been days away from collapsing and going to the ICU. They also said his body just hides infection and his white blood cells don’t elevate like normal. Landon’s symptoms had come back since he was home though and so they sent him back to the ER where they performed another spinal tap and readmitted him. He could not walk well and had begun to have a hesitation in his movement on the left side. The PT evaluated me and could not find a reason to keep him though they thought something was going on so he only spent like 4-5 days in the hospital that time and was given home health PT and OT. He was now using a walker to get around with the left side hesitation and moving made his head hurt worse. He had nerve tests which showed they were functioning normally and all CTs and MRIs came back clean. He lived with constant migraines still and was constantly at a 7-9 pain level. His pain had not stopped except temporarily it was less with the head injections. His doctor ordered some more tests but they were all normal.

Pain and Referrals

Landon returned to the ER multiple times to get the 12 nerve block shots injected into his head from the hospitalist neurologist which would give him usually a few days of no pain and lessened pain for up to a couple of weeks and it would resolve his movement issues. This was a welcome reprieve and something to be super grateful for however, at best, he got a couple weeks of help from the shots and usually had to wait 8+ hours to be seen. He was also evaluated by an ENT and they saw nothing remarkable. Landon got a referral to go to Barnes Jewish Hospital in St. Louis, Missouri to see a neurologist there to see what his opinion was on the case. Since he had had bacterial meningitis they sent him to see an infectious disease neurologist and he said nothing helpful and just to try for disability. This doctor put him on a medicine that caused a severe reaction that sent him back to the ER for fluids the next day (on July 4^th, 2024) because he was severely dehydrated. He tried diet changes and also tried Lyme detoxing protocols. There was no significant improvement from this though some of the supplements and things have helped support the health of his body during this. Landon’s doctor referred him to the Mayo Clinic in Rochester because he was not satisfied with the neurologist’s recommendation of “file for disability.”

Mayo trips and a diagnosis!

Landon went to the Mayo Clinic with his Dad and Mom (Paige and David) while Rachel stayed behind because she was 8+ months pregnant. Landon was evaluated by a headache specialist on July 31, 2024. He had many different appointments with movement specialists, ENTs, PT, and OT. He was eventually diagnosed with Functional Neurological Disorder (FND) though they wanted to check for blood clots with another MRI. FND is typically brought on by periods or events of very high stress which they said could have been triggered by the health issues, crazy job hours, and getting laid off suddenly. Ultimately no one knows for sure but there were plenty of stressful events. They said he was a good candidate for their FND program formerly called the BEST program. They said they could get him off of my walker though he might still have migraines as a separate issue though they were tied with the FND. They scheduled him for the movement program and they went home in time for his son to be born on 8/17/2024. Landon, Rachel, and Knox went to live with Paige and David during Rachel’s maternity leave because they needed physical help. Landon tried more migraine meds that helped temporarily but stopped quickly after that. Landon went back at the end of September to do the Mayo Clinic BEST program and have an MRI that looked at the structures in my brain for blood clots. That MRI was clear and Landon graduated from the BEST program after only 3 days. Their program is 5 days long but Landon went from struggling to walk on a walker with severe migraines, brain fog, forgetfulness, etc. to completely normal with no pain in the 3 days. Landon was doing box jumps and sprints by the end of it. They showed him how to help himself if the movement symptoms ever tried to come back as well. His last appointment at Mayo was October 3, 2024. He was normal for 3 weeks, told to live his life as if he was normal and to workout, gain strength back and live life.

Setbacks and mysteries

After 3 weeks Landon was pain free mostly though a couple times he had a low level migraine but could sleep and it would go away. Landon, Rachel, and Knox moved back to their apartment in SW Missouri about a week later on October 11^th. On October 27^th, Landon went to a bonfire, came home that night with a little bit of a migraine and woke up the next morning with a worse migraine. No medicine helped it again and this time even the ER medicines gave no relief. He had no mobility issues this time. He went back to his local neurologist and we tried some other medicines. The neurologist kept telling him to go the ER if the pain got bad but the meds there didn’t do anything and he was still at a 9-10 pain level. He was also retested for Lyme in this time which was now negative.

A big move and a new team of doctors.

Finally, Landon and Rachel made the decision to move in with family especially with the baby because it was too difficult for family to keep driving from another state and constantly helping and keep up with their own responsibilities and jobs and things. Landon has gained a new team of doctors that the Lord has been gracious to provide. He got into a headache specialist in Tulsa and she trained with the neurologist at Mayo who helped Landon. She recommended the Pain Rehabilitation Center (PRC) 16 day program that includes the cognitive behavioral therapy and biofeedback that will, Lord willing, give his brain the tools it needs to help out. She explained that his brain is very powerful if it was able to be retrained to walk in 3 days and there were more issues that he needed to tools to overcome. She explained that it is far beyond negative and positive thoughts and that God designed our brains so well and beautifully and that the “positive thoughts” that the world says, it’s actually faith. She referred him to the Mayo Clinic and started the process of working it out with insurance. It took a long time but the insurance finally approved the program and Landon was accepted into the PRC program! Landon also got established with a general neurologist who helped explain some things, explained that he believes Landon had a weird case of meningitis that kicked all this off that was a slow burn type infection, and agreed with the headache specialist that he needed the PRC program and that the cognitive behavioral therapy would be very helpful.

Next steps

Landon is scheduled to begin the 16 business day PRC program at the Mayo Clinic April 30th, 2025. We are trusting God for the means to go to Rochester, MN for 16 business days which is close to a month with the weekends. We are hopeful that the Lord will use this to bring Landon healing and to a place where he can work and provide like he wants to. Even if he never gets out of pain, if the Lord would heal him to allow him to work like he WANTS to. He’s not been able to work for close to 6 months. We pray that this trial will first and foremost bring God glory and be a means for others to come to Christ! We are thankful no matter how much pain Landon is in, his soul is well.