I buy magnesium capsules in bulk.
It calms the nervous system.
Tonight, I put the magnesium away in the cabinet for the last time.
And as I did, pure joy and gratefulness rushed through my body like I had never felt in my life.
I need to tell her story. Start to finish with all the answers. I haven't completely written in out before, and I need to.
It started in September 2023.
But I always knew.
Little S had a cavity. We weighed known risks vs benefit. Due to the proximity to the brain, she took an antibiotic before having the tooth pulled. (Despite good oral hygiene and timely treatment for cavities, she was very prone to getting more cavities. Answer #1.We later found out this was due to low IgA, a likely root cause for most of her issues.)
We treated.
The infection returned in a different cavity on another side. The doctor treated again. Antibiotics and a tooth extraction. The only two antibiotics Little S had had in 7 years of life.
Little S finished the last of her antibiotic while we were out of town on a trip.
We had pizza that night-and breadsticks.
The next morning she woke up with a rash all over her body. Jessie and I were at a timeshare meeting. Big S called us, and we dismissed it as being normal. (She has always gotten rashes.) Big S insisted that we needed to see it, so we cut the meeting short and went back to the room. It wasn't just a rash. It was hives. From head to toe.
We still chalked it up to a reaction to something at the hotel. Nothing unusual for her, especially since it was a water park. And then we left, hit Wal-Mart for some cream to help, and went home.
The next day we took her to the nurse on staff at my husband's job because she was complaining of joint pain. She checked her out and said it was most likely a reaction to her antibiotic, and that she would be okay.
We took her the next day to get the tooth extracted.
A few days pass, and I find myself in the middle of the night, (She had woken from a dead sleep.) consoling a screaming child in my living room recliner for hours.
It was time.
We took her to the ER where they diagnosed her with serum sickness. A type III hypersensitive reaction to her antibiotic that causes severe joint pain and hives. It would be over by day 10.
The days were painful, but the nights were unbearable. She couldn't even get up to use the bathroom, but touching her caused a pain unlike any she has ever felt before.
Finally Day 10 arrived, the day they told us it would end. And it did.
For a time.
Over the next few months she complained of stomach pain (worse than usual) and had rashes that would come and go within minutes. She once complained of joint pain for a minute, but then she let it go.
It wasn't until April when she started getting night sweats and headaches did we take her back to the doctor. They dismissed it as allergies and a hot house in the evenings due to Spring weather.
Then it progressed. Into joint pain. Into muscle pain. Into an inability to grip well. Into an inability to walk some days. There was stomach pain, sweating, a rise in temperature, headache then systemic pain.
I should have known what it was then.
The second time we took her to the PCP, we saw somebody different who knew her history better. She immediately ordered labs.
We took Little S to have them done. A few hours later, she started complaining that her arms felt heavy and tired. We told her she must have tensed up when she had the labs done and that it would go away.
It didn't. And over time, it spread to her legs and her neck.
This thing, it was unstoppable.
In the beginning I wrote this:
"I am scared. I'm so scared. I know the Lord doesn't give us a spirit of fear. I know that we should count it all joy, the trials we face. And I am. I have my list that I made. That we have had so many wonderful years and memories with my sweet baby. The one who we prayed for. The one who we waited for for 4 years."
I rejoiced, but I was scared. I thought she might actually die. Every time she had an episode, I didn't know what to do. I couldn't make them stop! She would tell me she hurt one minute and then she was fine the next. Her pain didn't seem as bad when friends were around. Multiple times we questioned what she was telling the truth about and what she wasn't. (Little did I know, it would all tie together in the end.)
She went to specialist after specialist, each one we had to push her into being able to see. Some had 6 months wait lists. Her PCP wrote letters to have her pushed into any cancellations due to the severity and worsening of her condition.
The ERs told us that we should load her up on Ibuprofen and wait it out!!!
She saw nephrology because her kidney labs were out of range. She was sent home with an "it happens."
She saw GI who dismissed her stomach pain as "functional" and tried to put her on antidepressants.
He told us to put her back on gluten, that it wasn't the issue. Within a week, it resulted in joint pain in her fingers that was so bad, she would go a full day without being able to bend them. It then progressed into the inability to hold up her head. As soon as we realized the cause, we pulled her back off of it and she improved over the next couple of weeks.
She saw a rheumatologist who said the problem wasn't autoimmunity and that positive ANAs are sometimes for no reason. She took labs and also told us her low IgA would be fine.
She did prescribe 8 sessions of physical therapy.
She also bounced us to neurology who did everything she possibly could including an MRI and EMG (which is incredibly painful). She spent hours in the room assessing Little S and taking notes, but in the end, she only offered pain management. She did say something, however, that stuck with me for months. (That pain management wasn't just drugs, but also included Cognitive Behavioral Therapy.)
After neurology, the PCP recommended Immunology due to her prior reaction to the antibiotic. The Immunologist took labs and found nothing unusual besides low IgA and a bunch of Inborn Errors of Immunity in her genetic testing that he "didn't understand." He told me multiple times that he was more of an allergist and therefore didn't know (even though he was the advertised Immunologist on staff).
Later on, she even saw an Opthalmologist who called her a liar.
In between all these doctors, I was desperate for her to get a relief from the pain. At this point, we were hauling a wheelchair everywhere in case she couldn't walk. I saw an old friend at one of our homeschooling events and remembered that she was a chiropractor and her husband did massage therapy. I called to make Little S an appointment, and she recommended chiropractic as a starting point as opposed to massage. So we did. Little S improved. She went from having daily episodes of not walking and her immune system flaring to weekly. It was a welcomed relief for Little S.
After Immunology, we reached a dead end. But I couldn't take "I don't know," for an answer.
We took this as our green light to try alternative medicine without the fear of the government trying to step in and say we weren't treating her. I set Little S up to see a Functional Doctor ASAP. By this time it was August. She had endured 5 months of flares, sometimes multiple times a day, and pain 24/7. Everything seemed to set it off. Foods. Heat. Activity.
Her functional doctor took panels for food sensitivities, allergies, and gut health. He put her on multiple anti-inflammatory supplements and a gut cleanse. (His assumption, due to the symptoms and positive ANA was autoimmunity, but it always ties back to the gut.) Over time, her symptoms improved immensely. Her flares were fewer and further between. The rashes went away. The stomach pain subsided. Although her flares were further apart, something still wasn't right. We tried changes in diet. We tried different supplements. I took her in for one of many appointments with him a year in. I was so excited to see her results for her gut health now that we had done the cleanse. To my disappointment, while we had eradicated one issue and significantly knocked down another, she still needed another round of antiparasitic herbs. She had taken them before, so we gave them to her, and she reacted! Within 20 minutes, she had a fever and systemic pain that flared for hours, but lingered for days! Now that she was doing better, pinpointing things was no issue. So we pulled it. We tried oregano oil. The same! Then I gave her a probiotic that she had taken before briefly, SAME! What was happening? As I was collaborating with the doctor, we discussed some possibilities, and he looked at me and said, "This seems like mast cell activation!" So she began a mast cell stabilizing supplement. I also started her on an antihistamine herbal blend for good measure. Within weeks, her nose was no longer stuffy. Within months, the flares completely stopped. (Answer #2. This was Mast Cell Activation Syndrome!) This puts her symptoms of being in pain one minute and better the next into perspective. I have had mast cell reactions. This is exactly how it happens! In fact, I have recently learned that I had them for years, and that was the reason I couldn't have another baby for so long! I was taking supplement after supplement trying to pinpoint what was wrong. I eventually took Serrapeptase because I thought I had endometriosis. It calmed my inflammation enough to stop the reactions, but I had no idea that it was MCAS. The inflammation stayed at bay until recently, so I started taking Little S's supplements to stabilize my own mast cells. Within a month, I was better again. That was the start of the end of her MCAS. She will always have it. We will always have to keep a few things out of her diet (smoked foods, gluten, probiotics, strong antiparasitic herbs...) But she is better.
Then there was one. One thing that lingered. The chronic pain. I knew with everything in me we could get rid of it. We tried more and more anti inflammatory supplements thinking it was inflammation related. We tried supplements to repair the nerves. The only thing that gave even a little relief long term was magnesium.
The only thing that gave a bit of relief once it flared was ice.
Most days she was okay. Every day she could walk.
But the pain was always there, a reminder that "she was sick."
In November of 2025, we started Little S on a low histamine diet in hopes that her pain would go away. A low histamine diet is one of the hardest diets to follow. Also, we noticed she started having pain anytime she did eat a food that was high histamine. But the pain wasn't going away because she was eating low histamine. We were discouraged.
One night, I was tucking Little S into bed and she said to me, "Mommy. Don't leave me. If you leave, I'll hurt worse." And at that moment, the look in her eyes, I knew she meant it, but I didn't understand it.
I began to look into CBT as an option to manage her pain. If I am being honest though, I was afraid. I didn't want anybody questioning her about her symptoms and making her uncomfortable. She was over that. I was over that!! I didn't want her to feel trapped in a room alone. It was hard enough to get her to agree to do CBT just once to try it. Because of all of that, I was trying to find a therapist house in a more naturally minded holistic clinic that would understand why we took the route we did. I found one. I called and spoke with him. He said he could work with kids, but he would recommend that she do sessions with a woman named Jamie Shafir out in California who uses something called Pain Reprocessing Therapy adapted it for kids.
I contacted her. $220 per visit. Minimum of 12 visits to see results.
But I couldn't say I would do anything to see her get better if I didn't try this.
So we did it. She did weekly meetings over Zoom. Little S learned about pain and how we can feel it, even when there is nothing there to physically cause it. (Boot Nail Guy). She learned that "Tahini" (the name she gave her pain) is not dangerous. Little by little, they changed her relationship with pain. She learned ways to send her body signals of safety, even when she was in pain. The important part here is to break the fear/pain loop. They spend time talking about worry and how it affects pain. (And boy, does it affect hers!) And then they spent some time reintroducing things that once seemed scary. (The trampoline. The one thing she had given up that shattered my Mom heart. The place where so many good memories were made with all the kids in our family, and she just gave it up because it hurt too much to jump.)
Answer #3. Its called neuroplastic pain. When Little S had her labs drawn, her nervous system (as well as her immune system) was already on high alert from the serum sickness. When her body started sending alarm signals after feeling threatened by the blood draw, the signals just never turned off. The immune flares, certain foods, and even certain activities would amplify it, but it would never completely go away. It always went back to baseline.
Within four weeks, we noticed she stopped jumping constantly. (Something she used to do to ease the pain in her legs and regulate her nervous system, although she didn't realize it.) She also stopped crying so easily. (Another sign of an overloaded nervous system.) Within eight weeks, she was sleeping without ice packs at night. By week 12, her pain reduced significantly. Right on target. I couldn't believe it. She was getting ready to graduate therapy, when one day the pain got worse. She said she just needed to lay in bed that day. My general recommendation before I knew what was happening would be this: Yes, lay in bed and listen to your book. We will make sure to eat even healthier than usual and hydrate. But I knew we had to break the fear/pain cycle. So I did this instead.
I gave her cookies and told her she was safe.
We sat together for 30 minutes or so, and then she was back on her feet and playing. I knew we had made progress, not regression. The next day she said pain had gone away even more. She graduated therapy with a very low level of background noise.
Last week, her pain began again. In my head, I thought, "Maybe it's the MCAS. It is allergy season." "Maybe she is getting worse because she isn't in therapy anymore or because we stopped the deep breathing or maybe it's because I pulled her magnesium." But I simply said to Little S, "That's just Tahini getting mad because you won't give her attention." Off to sleep she went, or off to play.
Then this morning she said,
"Mom. It's gone. Even when I look at Tahini and talk about it, it's gone. It's gone!"
Right then and there, I knew, she is better.
Tahini may come and go over the next few months before that pathway in her brain eventually gives out. But we did it. We conquered it. I know that God's hand guided us through each step, so gently and tenderly, knowing that we couldn't handle it all at once. He spoke to me in the beginning. He spoke to me when He told me this was immune related. He spoke to me again when He told me the battle was won, but the war was not over, and we COULD get rid of her pain. His timing was perfect, and he provided for her. The month that we decided to try alternative medicine, my Husband's job offered a health benefit unparalleled to any I have ever seen before. And it made it possible to get her the help she desperately needed. He was there when the church prayed over her. He was there when she was asking why He didn't heal her on the spot. He was there the whole time. Whether or not she had been completely healed, He was always there. I can't wait to be able to share her story of healing with those who need it most.
As for Little S, she has been through so much. There were days when she thought she might be dying. One question she asked me in the beginning will always stick with me: "What happens to kids like me when they can't find out what is wrong? Do they just die?" And she cried. She cried so much. She has fought me on doctors, and blood draws, and supplements for that matter. She's been scared. She's been sad. She's been angry. She has had questions that can't be answered with words alone. But she learned. She became responsible. She became empathetic. She has experienced hope, joy, and peace. She has had questions answered in only ways God can answer them.
I would never in a million years wish her to be sick, but I am rejoicing at the growth that came because of it.
