Answers and Health for Kaiden

Answers and Health for Kaiden

From Wendy O'Neil

5 months ago our son, Kaiden, developed severe back pain that has rendered him 99% bedridden. We're searching for answers and expenses are adding up. We really need some outside help.

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Update #1

over 2 years ago

Dear Helpers,
We are eternally grateful for your help and do not want to leave you all hanging, so we'll do our best to explain what we've discovered this week and what our plan is from here.
First, We recently had a genetic report run for Kaiden and this week we got some pertinent information from that report. The summary of that report is basically that he has approximately 4 genetic mutations that are, in tandem, acting like an autoimmune condition on a cellular level. The short version is that instead of his genes growing healthy muscle and nerves and helping injuries heal, they attack/ break down healthy tissue and nerves.
Second, Kaiden's new doctor at Stanford has given him a diagnosis of "Benign Joint Hyper Mobility Syndrome" or BJHS. Benign in this situation means non rheumatoid. BJHS causes random joint and muscle pains and an over reactive nervous system. It also has flare-ups that can be brought on by injuries and life/environmental stressors. It can cause little pains or big ones that are temporary or longer lasting. The combination of Kaiden's genetic mutations and BJHS can definitely explain what's going on with Kaiden's back. It can also explain why he can't describe the pain. He's never experienced nerve pain before.
So, there's what we understand the next steps to be for us and Kaiden.
1. We need to research Kaiden's genetic variations some more as well as exactly which natural supplements (or medications) he should be on consistently to help his body function in a healthy way instead of attacking itself.

2. We have a couple friends who have forms of hyper mobility and there are definitely some crossover symptoms with Lyme. So we still want to pursue the Lyme & co-infection testing just in case it is an additional compounding factor.

3. Kaiden's new doctor at the Stanford clinic is referring him to a pediatric pain psychiatrist to get him some temporary pain medication to help him as he begins working his way back to strength and out of pain. The psychiatrist and follow-up visits with the overseeing doctor will be at the Stanford pain clinic.

4. The Stanford physical therapist gave Kaiden a daily, very gradually increasing, movement schedule. She also prescribed in home physical therapy that will slowly and gently help Kaiden work toward outpatient physical therapy and ultimately health/self care/maintenance. He'll likely continue seeing the chiropractor regularly to also help with healing and maintenance.

5.The Stanford mental health provider gave us things for Kaiden to work on with a mental health provider here for help in managing/ handling pain.
6. We're also continuing to work with a homeopath here in Chico. In our experience homeopathy aids in helping the body to balance itself. When our body's are balanced they are able to heal at a more foundational level.

7. Once Kaiden works his way back to health there are things he'll have to do physically on a regular routine to help prevent flare-ups from happening. His Stanford doctor projects that it will take a year to a year and a half for Kaiden to get to this place.
Thank you again with all our hearts for being partners with us in helping Kaiden to heal and for believing with us for the best possible outcome. We couldn't do it without you.

More Info

About 5 months ago our son, Kaiden, developed what seemed like a sudden onset of severe back pain. Over the time span of 3-4 days, he went from being a really active kiddo saying that his back was hurting a bit to not being able to sit and being 99% bedridden. He's now in bed most of the time and uses a cane to walk to the restroom or get to the car. We started our "investigation" into the cause(s) at the end of January this year.  We've tried chiropractic, massage therapy,  had x-rays, numerous blood tests, a full spinal MRI, and physical therapy so far, and still have not found answers or solutions to. Since our town doesn't have any pediatric pain or neurological specialists, our son's pediatrician has referred us to Stanford Pediatric Pain Clinic. In April we were finally given an appointment date of July 11 but were also put on their priority cancellation list.             Meanwhile we've been making the most of our waiting by continuing to research symptoms while trying to recall any possible injury or illness that could have contributed. We've also been working with a homeopath, and today at the recommendation of many, and with some financial assistance from family, we were able to take Kaiden to a new chiropractor who has a reputation for being able to spot things other professionals haven't been able to yet. She gave us some good directions to pursue.

            As many of you may know, the expenses of finding answers to health problems and getting well add up quickly, especially if you don't just want to throw medicine at the symptoms. My husband and I are both working but expenses  have been increasing above what we are currently able to earn. So, we are humbly asking for some financial help. The following are our top 3 most pressing needs. a) We received a call  letting us know there's been a cancellation this week at the pain clinic which is a 3.5 hours drive away. The cost of gas, food, lodging and missing 2.5 days work for the trip down to the appointment for our son and one of us parents are more than what we can afford at the moment. This will likely be the first of a few appointments at this location. b) Kaiden's insurance does not cover the new chiropractor and he'll likely need a handful of visits to keep the structural healing  going.

c) Lastly for now. Many of Kaiden's symptoms are pointing toward chronic Lyme disease as a piece of the puzzle. The main test that could tell us definitively if Lyme is in fact what he's dealing with runs between $700 and $2600 with the blood draw cost. The total is dependent on which test the doctor feels would give us the necessary answers. This is definitely not something we can cover out of pocket , without help, in the foreseeable future and it is not something our son's insurance will cover for him. Thank you so much for whatever help you can offer even if it's positive thoughts or prayer.

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Wendy O'Neil posted a new update:
over 2 years ago

Update #1

Dear Helpers,
We are eternally grateful for your help and do not want to leave you all hanging, so we'll do our best to explain what we've discovered this week and what our plan is from here.
First, We recently had a genetic report run for Kaiden and this week we got some pertinent information from that report. The summary of that report is basically that he has approximately 4 genetic mutations that are, in tandem, acting like an autoimmune condition on a cellular level. The short version is that instead of his genes growing healthy muscle and nerves and helping injuries heal, they attack/ break down healthy tissue and nerves.
Second, Kaiden's new doctor at Stanford has given him a diagnosis of "Benign Joint Hyper Mobility Syndrome" or BJHS. Benign in this situation means non rheumatoid. BJHS causes random joint and muscle pains and an over reactive nervous system. It also has flare-ups that can be brought on by injuries and life/environmental stressors. It can cause little pains or big ones that are temporary or longer lasting. The combination of Kaiden's genetic mutations and BJHS can definitely explain what's going on with Kaiden's back. It can also explain why he can't describe the pain. He's never experienced nerve pain before.
So, there's what we understand the next steps to be for us and Kaiden.
1. We need to research Kaiden's genetic variations some more as well as exactly which natural supplements (or medications) he should be on consistently to help his body function in a healthy way instead of attacking itself.

2. We have a couple friends who have forms of hyper mobility and there are definitely some crossover symptoms with Lyme. So we still want to pursue the Lyme & co-infection testing just in case it is an additional compounding factor.

3. Kaiden's new doctor at the Stanford clinic is referring him to a pediatric pain psychiatrist to get him some temporary pain medication to help him as he begins working his way back to strength and out of pain. The psychiatrist and follow-up visits with the overseeing doctor will be at the Stanford pain clinic.

4. The Stanford physical therapist gave Kaiden a daily, very gradually increasing, movement schedule. She also prescribed in home physical therapy that will slowly and gently help Kaiden work toward outpatient physical therapy and ultimately health/self care/maintenance. He'll likely continue seeing the chiropractor regularly to also help with healing and maintenance.

5.The Stanford mental health provider gave us things for Kaiden to work on with a mental health provider here for help in managing/ handling pain.
6. We're also continuing to work with a homeopath here in Chico. In our experience homeopathy aids in helping the body to balance itself. When our body's are balanced they are able to heal at a more foundational level.

7. Once Kaiden works his way back to health there are things he'll have to do physically on a regular routine to help prevent flare-ups from happening. His Stanford doctor projects that it will take a year to a year and a half for Kaiden to get to this place.
Thank you again with all our hearts for being partners with us in helping Kaiden to heal and for believing with us for the best possible outcome. We couldn't do it without you.

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