Remission

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. 

Week 12

 And we made it. 

Here we are at week 12. 

As promised, the pain is just disappearing. Not all the time, and it surely isn't a linear thing. But Little S is going longer and longer stretches with reduced pain. How is it even possible? How could this even work? 

My mind is questioning, but my heart is rejoicing. How it is rejoicing!! 

This therapy has helped in more ways than pain. It has taught her how to handle worry, and how to talk when something shouldn't be held in. 

She is a very introspective and loving little girl, and I enjoy watching her grow and mature despite all of this. 

My heart is overflowing. Most people just don't understand the excitement and gratitude I feel when I tell them.  

My little girl can walk. Every day. She never has to wonder if she will wait up in the morning and not be able to walk. 

My sweet girl can eat foods she couldn't eat before because they caused excruciating pain. 

She can jump on the trampoline again! She can jump on the trampoline again! The trampoline is such a big part of her childhood and our family culture. 😅 There have been more children on there than I can remember. Countless hours jumping, playing, laying around and looking at the stars. When she stopped, my heart broke. This favorite past time, a place where she grew up, was taken from her because of her pain. And after 2 years, she can finally do it again. My heart is pouring over with gratefulness. 

She doesn't need ice packs every night. She doesn't bounce constantly. She doesn't take supplements 6 times a day. 

Once therapy is done, she will take 4 supplements a day. Two in the morning and two at night. They stabilize her mast cells and keep inflammation (caused by any reactions) down in her body and in her gut. We will avoid gluten (causes neurological symptoms) and smoked foods, probiotics, and herbal anti parasitics (all of which causes her to have a true flare). Other than that, she can live her normal life. In all my life, I have never been more grateful for anything. What a gift. 

One of the Best Presents Ever

I always thought the best Christmas present ever would be to find out we are having another baby. 

Now, that would extraordinary. However, equally extraordinary, if not more extraordinary, is the gift I received today. 

It started over 2 years ago to be precise, but I've already set out all the details of how the serum sickness lead to this that lead to that.

And that I can't take, "I don't know for an answer." Most recently I could feel with everything in me that she had been diagnosed wrong. Through much prayer and digging through medical journals and functional medicine books, I presented to Little S's doctor my questions about MCAS (mast cell activation syndrome). Much to my delight, they admitted there is much evidence, her symptoms match perfectly, and the treatment she has received has calmed it. With that said, there is no official test without drawing blood during a major flare-which she doesn't have anymore. 🙌 Gift number one. 

We received this a few months ago. 

But the chronic pain would not go away. It was just sticking around. Low level, annoying aching every minute of every single day just reminding her constantly that she has to deal with something most of her friends don't. We tried multiple anti inflammatory supplements, increasing supplements that calmed mast cells, and even a low histamine diet. 

Then one night at the end of November, Sara said something to me that would change her life forever. "Don't leave me, Mommy. If you do, I will hurt worse." 

Now, we had been around this block more than a few times. And quite a few times we accused her of milking her pain. But this night, if was different. I could see it in her eyes. If I left, the pain would, in fact, get worse. But how is that possible? Is our brain that strong? 

We cuddled for awhile. Then I encouraged her to be strong and sleep without me, which she did. 

The next day I began looking into CBT locally. (This was terrifying to me. The idea that she would be alone in a room with another doctor that would probably know she doesn't take pain medication (because it doesn't work) and still hasn't received the completely formal diagnosis and treatment beyond functional medicine (not due to our own failures, but to the fact that the doctors couldn't find it.) I know that what we have done is legal, and her PCP is completely in the loop. However, I was preparing myself to answer the plethora of questions that might follow. When I called a local therapist, he directed me to PRT (Pain Reprocessing Therapy). He told me that it would be the most effective for her case and that there is a woman who specializes in this kind of thing for children and even wrote a book about it. 

The minimum age for this therapy is Sara's exact age. (She just had a birthday that month.) The younger they start, the more effective it is. 

Major progress is seen within 12 weeks. 

Just 3 months. 

Three months away from pain not controlling her life. But how? 

The premise seems so hippy dippy, even for my own liking. 

Chronic pain fluctuates. Stress makes it worse. Excitement makes it better. When you are doing something calming, like cuddling with Mom, the knob is at green or yellow. When you are doing something you don't like, like trying to go to bed or attempting math problems on your own, pain can turn to high yellow or red. 

She agreed to do the therapy reluctantly, and has even said to me and her therapist multiple times, "This is silly." 

We are officially 4 weeks in. 

A third of the way there. 

I was starting to get frustrated at how little ground I felt they had covered. I mean, this stuff is not cheap. 

Then something happened. 

It's hard to describe. 

Today, while she was doing her exercises, she said to me, "My pain goes away when I sit just exactly like this." Now, this kid is not easily duped, and as much as she wants the pain to disappear, there is not a bone in her body that believes deep breathing and somatic tracking will work. She truly thought it was more likely that, despite the fact that her pain has not stopped for one second in the last few years, that sitting exactly like that is what resolved the pain vs the pain exercises we were doing.

Fast forward a minute and her sister opens the front door. Little S stands up, and the moment she does, the pain returns. 

But here is the thing, a switch flipped. Even if only for a few seconds, the pain CAN be turned off. And that is just the beginning. The explanation behind it is unreal. Watching it unfold so quickly 

See, the thing is, we calmed her immune system with the supplements. But her nervous system was still in fight of flight, always sending the message of DANGER through her pain. We have to get her nervous system to stand. down, and that is what we are doing. 

It seems too easy, but I couldn't say I would do anything to get her pain to go away if I wasn't willing to try this too. 

I'm just praising God for this amazing gift, that He is healing her in His own time, and His own way. And I pray that she will see it for what it really is, a healing gift from God. 

Living with Abandon

 I have duped myself

Into thinking that I have been living a life in full surrender to God. 

That somehow I had mastered the artful balance of having no fear, but doing whatever God asks of me. 

After all, we fostered my sisters that we didn't know. 

After that, we helped them into adulthood. 

During all that we loved all the kids around us, went to church, lived a life of "sacrifice" homeschooling our children. 

But....All while holding back and having boundaries and plenty of rest in between. Time for trips, puzzles, games, read alouds, and occasionally laying in bed for an extra hour in the morning just to get snuggles from my youngest and catch up with my oldest. 

We own a nice home, our only debt. Have money in the bank so we don't panic when something goes wrong. Three cars, albeit old.  (I told myself I am a very content person, like it was a saintly quality.) I'm somewhat of a minimalist that has created an excuse for the things we do have. (It's for ministering from our home...) I spend my time organizing and thrifting to fill the house with beautiful items to make it feel more like home. But it always felt like something was missing. 

I prayed. Oh, I prayed that God would show me what he has next. I prayed for my Husband to release his own will to God and for my oldest to open herself up to what He has. 

*I thought I was doing so well letting my teen go, by the way. She got her license. She is dual enrolling in school. She is getting a job. I drop her off with friends and let her go out of town over night with friends that I'm not necessarily BFF with the parents...I never wanted to hold her back from learning to be an adult. To produce the anxiety in her that I have from a lack of experiences.*

Still, we got....comfortable. 

Then it happened. I called my husband while we were at Summer Camp and told him I had a dream. That he had to choose between being at his incredibly comfortable job (with a 401K that puts in 4X what he does, with free healthcare and doubling his HSA dollars along with almost 6 weeks of vacation time) (It is an absolute dream, by the way.), and what God had for him. 

His response? "That's weird. I had a similar dream. I went to the QT and had to choose between a honey bun and a bear claw." 

So very out of character for him, and honestly I wanted to cry. But I just cried out to God and ask him to change his heart. 

Two days later he did. And here I am in a puddle of my own sorrow because of it. How dare I feel sorry for myself? After all these years of begging God to move us out of complacency. 

My grandmother passed away less than 12 hours after we got back from camp. 

And the ball began rolling. He felt God pressing on his heart. Then the interim pastor spoke on Agape love. Do you know how many sermons we sat through that I thought would reach my Husband's heart (Nevermind the fact that I should have been turning the mirror to myself sometimes.), but they never did. And then this one, that seemed so simple and had been preached on so many times in our church walls...it struck him hard. 

He told me he needed to live with abandon and stop using church hurt and boundaries as an excuse not to. 

I was thrilled until...

This next part that has been a long time coming. Now my oldest daughter and my one and only husband of almost 20 years are headed to Honduras in a few months and I am scared out of my wits. 

When I think of the dream I had just a week or so before, I feel sick to my stomach, "God, what do you have for us? I will do anything but _____." 

How can I say I have lived a life of sacrifice after I attempted to bargain with God (don't do that 😅) that if my Husband would just live a life of complete abandon for God, I would follow him anywhere? 

Now suddenly I don't want him to lose his cushy job. I don't want to have to move. I don't want to go anywhere that I don't feel safe. I don't want my family away from me. I want control. 

That is where I am. God has taken my biggest fear, travel, and is using it to change the hearts and lives of my family, and I am going down kicking and screaming. 

God is having me make good on some other things I have prayed about for years, but also never considered the sacrifice it would take. 

This is hard. This is going to be living a life of sacrifice. I do not want to be found disobedient and unfaithful for the sake of my comfort. Oh, this is going to be hard. 

One Year Out

 The Magic 8 Ball is Cruel...But God is Good! 

I saw Little S in the corner of the thrift store one day, crying. 

When I asked her why, here is what she said. 

"I asked the 8 Ball if the pain in my legs would ever go away, and it said, "Don't Count On It." 

This isn't the first time she has wished on a clock or asked an 8 Ball. It's every time. 

The Magic 8 Ball is cruel, but God is So Good! 

I had to remind her of this. I had to remind her how far she has come and how much healing God has provided. And how even if he didn't, we are to be thankful in all things. Rejoice in Him...always. 

That's hard for an 8 year old to hear. 

But she has come so far. The other day, she even got sick. 

I never thought I would rejoice over a stomach bug, but hear me out. 

When Sara first got sick, it was little things here and there. Headaches. Joint pain. Then it progressed into leg pain and eventually a point where she couldn't walk for days. She dropped things constantly. She HURT. The GI doctor told us to give gluten back, and suddenly the flare ups were even worse. (We didn't see it at the time.) After the PCP forced her into each specialist and they found nothing, we saw the functional doctor. He has put her on natural anti inflammatories, helped pinpoint her diet sensitivities, cleaned up her gut, and put her on some things to settle her immune system against allergens. 

I started noticing small things, like her not complaining about daily stomachs pain, as well as big things like no nightly flare ups. Then she started noticing things like her eczema clearing up for the first time in her life. I almost cried when she walked up me, said, "Do you hear this?" Sniffed. And there was nothing to hear. Her nose was clear. She wasn't coughing. For the first time in a long time. 

We are months out from this day. She occasionally has some bad days if she eats gluten on accident. (This has  only happened three times. Once at a party and once with a family member.) She went on vacation with no flares. That was a big deal. Then she got sick last weekend with a stomach bug and I just rejoiced. Since she had serum sickness in Fall on 2023, she has not been ABLE to get sick. The rest of the family has had flu, stomach virus, and some kind of respiratory virus. She just flares up for days fighting it off and never gets sick. When she got sick and fought it off with a small fever in a normal amount of time, I knew we had won. 

It's been a battle. Little S is relentlessly stubborn. We went through a season of not wanting to go to the chiropractor because it was "another doctor." We made it through. Now we see the chiropractor once a month and functional twice a year. In fact, before she used to hide. Now she talk to the chiropractor without taking a breath. We went through a season of learning how to take supplements and fighting me every single evening that she had to. We made it through. Now I put all of her stuff in organizers and she grabs her own each day. And we went through a season on tears about the food. It's hard to watch your friends eat brownies and candies and such. Now when I consider making an exception (because it hurts to see my baby sad), she says, "No thank you. It's not worth the pain." She brings her own snacks and foods with a smile on her face, knowing that she is thankful to have what she has and that it won't hurt her. (But I won't lie, I know there is a part of her that wishes she could eat just one of those things and not be laid up in bed for a day.)

She has fought a good fight, and is winning. Might she regress? Maybe, but we will keep fighting. The thing the doctor said didn't exist. The things they said they couldn't do anything about. The pain we thought she would always have....she is healing. 

All that lingers is some low level leg and arm pain. "Don't Count On It." Well, my God is good. He created medicine for our bodies and foods that heal. I will rejoice in Him...Always. 

How the System Failed Us and Things I Said I Would Never Do

 I have been vague because the doctors have been vague, and the only thing I know is the way my heart feels when she looks so sad or scared. Sometimes it feels worse now than in the beginning because this is so normal to her now, she isn't scared anymore. I used to wake her up with the question, "Can you walk today?" Now I don't ask. I just wait and see. And when she can't, it's just normal. 

So, this all started a long time ago, I am sure. It has been a chain of events setting off inflammation like a fire in her body, but I digress. Suffice it to say, it reared its ugly head in April. Little S started having headaches and night sweats. My Husband isn't big on the "wait and see" approach, which is probably a good thing because I am a big fan of the, "Toughen Up" approach, which has put us in a bad place a few times, so we balance each other out. 

So, as he requested, I took her to the doctor. We didn't get to see the lady she saw back when she had serum sickness, but a man instead. He told us it was allergies and that our house is probably just hot in the evenings with Spring coming, causing the sweating. He offered to check her thyroid, but I declined because he seemed confident and I have a needle phobia, which I am certain I project onto my own children. 

Fast forward a week and she began having joint pain. Now, this time I listened and acted quickly because she had serum sickness in the Fall, caused by a bad reaction to only the second antibiotic she had ever had in her life! It was brutal. Painful and debilitating. She couldn't walk, and she screamed if she was touched. She has never experienced pain like it before or since. The doctors said the best way to describe it was like glass in her joints. 

So we went back to the doctor, the lady this time, who sent her for several labs. Little S came home after complaining about pain in her arm muscles. We told her it was just from tensing up during the draw and that she would be fine. 

Some of it is a blur, but she wasn't fine. At some point, she began having issues with her muscles in her arms and legs. She began waking up unable to walk, unable to lift her arms. Some days she couldn't hold anything. Some days she couldn't bend her fingers. She hurt. She was tired. She had headaches and hot flashes and stomach pain. But then, sometimes she was okay. 

Her lab work came back with low Vitamin D and a positive ANA for autoimmunity. We got a referral in April for rheumatology. Their first opening was the end of July. I was not going to accept that. The Pediatrician told us to take her to the Atlanta ER in hopes that they would have the on call rheumatologist see her so we didn't have to wait. 

The verdict? She is constipated. Maybe the toxins are leaking into her body somehow. "Pump her full" of Ibuprofen, and wait until her appointment in July. 

...

I am not sure if any of you have read the back of the box label on Ibuprofen or knew a child who almost died from taking Ibuprofen too often, but I have. It wasn't until later that another doctor told me they should be sued for malpractice. So my choices were give her Ibuprofen daily to take away her immediate pain and deal with it on the back end or give her nothing, because there are no gentle quick acting anti inflammatory medications. Nothing like a catch 22 to make you feel like the worst mom in the world. Sara has an MTHFR mutation, so she really shouldn't have it anyway. This put us in a real bind.

I wasn't taking that for an answer. I refused, so I called every single day to see if the doctor had a cancellation. It wasn't long before she did. We got in mid-May, about 2 weeks after her labwork came back. 

I was thrilled. This was going to be the day we got answers. My baby was going to stop hurting. There is no way this was not the right place for us to be. Imagine my disappointment when the rheumatologist blew us off and told us to see neurology. 

Maybe we didn't explain it well enough? At that point, we were having an issue pinning down things. Her pains moved around. In the beginning, her hips hurt all the time. Now its her neck. In the beginning, the rough pains lasted anywhere from 30 minutes to a day. Now it can last 3 or 4 days or just flare up at night for a week. 

I will give her this. She ran the labs to be sure. All that came back was low IgA, so she referred us over to neurology. 

This was one of my first lessons I learned. Labs are not always reliable. Little S's inflammatory markers were on the high end of "normal," yet she has none of the risk factors that should cause it to be up there. She has a good diet. No gluten. No sugar. Next to no dairy. Her BMI is normal. But nobody questioned that. 

So we went through the same thing with neurology as well as with immunology after that. No openings for 6-8 months, pushing to get in, and finding nothing. (Although, at one point, we were almost certain it was Myasthenia Gravis when her test reflexed. That caused us quite a scare.) The neurologist was absolutely wonderful and so thorough. But again, labs came back normal. Her EMG came back normal. Her MRI came back normal. 

During the waiting, we also had to see a nephrologist and GI. Nephrologist wasn't really needed. She just had a wonky lab come back, so the Pediatrician referred her to be safe. GI blew it off and wanted her on a serotonin blocker, as he suggested her pain was imagined. We declined. 

The GI did find gallbladder sludge, which he quickly dismissed as "something that just happens and would probably go away." This shocked me, as she had been having pain where her gallbladder was at, hence the reason for the scan, and she was too young to have "sludge." Her gallbladder wasn't emptying properly, and we were going to ignore the signs? This is just one example of some things I found  very frustrating along the way. We aren't finding much, but what we do find, we are ignoring?

Not finding "anything" was a relief, but with each visit, I felt like we were getting further away from answers. We were at a dead end. Nobody knew what to do from there. 

After receiving no answers and seeing so many doctors, going to the ER multiple times during a bad flare up, and her symptoms getting worse, we began to look into functional medicine. 

The idea of a doctor who knows how it all works together, who will use multiple different types of approaches, and wants to treat the underlying issue instead of covering up symptoms, was very appealing at this point. Of course, insurance doesn't cover it. Figures. They're  also didn't cover the chiropractic care she began receiving in June. It was the only treatment she had been offered that really addressed some of her issues, and it was lessening her symptoms significantly. She stopped having the dizziness. Her hips stopped hurting so bad, and her debilitating flare ups reduced to once a week vs. daily. But we still didn't answers, and she still hurt. 

So in August, we began seeing a functional doctor for her. He has run tests that I have never even heard of. He was able to go through all of her labwork with me and show me what we need to address as well as all the markers that show autoimmunity. We found things that are causing issues that no doctor would have found. I KNEW something was wrong, but the doctors repeatedly dismissed it. 

I told them that Sara has pain in her chest, and that it wasn't heartburn, but they said it was impossible. 

She had an H. Pylori overgrowth. It has now been treated. 

She had pain after eating carbs. At one point she could only eat vegetables without hurting. They said it was probably just general stomach pain. Lack of a certain digestive enzyme for carbs showed in her labs. Treated. 

Glabladder sludge, not normal. Treated. 

She had parasites, a yeast overgrowth, and an overgrowth of bad bacteria. Currently still treating. 

Leaky gut. That is the next step after we kill the bad bugs. 

He was the first doctor to be able to sit down with me and explain the possible chain of events that made me say, "Yes, I noticed this when..." "She had signs of that years ago. I just didn't know." So the kettle has overflowed. 

We are currently treating her autoimmunity with no nasty side effects. We are downregulating her immune system naturally, and it is working most days. We were down to once every 2 weeks, but diet is a major factor, and Halloween exists, which set us back quite a bit. Now, as I wrote this, she has gone 5 weeks with only a little pain here or there, but no flare ups. 

We had to cut gluten out again, become more strict on sugar, minimize eggs and oats temporarily, and allow nothing processed and prepackaged. 

We have started not just buying grassfed beef like we were, but fresh beef from the farm, quail eggs, and a few other items from the farms nearby to minimize what we are purchasing at the grocery store. It was the push I needed, honestly. 

And my baby is getting better. So. Much. Better. 

Praise God!

Now....

On to the things I said I would never do. This has been a very heard season of parenting to navigate. To me, Sara is special. To others, she is just another person. So when I get frustrated that people are going out places while they are sick, and I start thinking about how sickness is what triggered the final stages of this and how much worse she will get if she does get sick, I have to remember that Little S is not a concern to them. 

There are so many more things to navigate, such as handling school. I am thankful we don't have to make the decision each morning as to whether or not she will go and if she is getting behind or what her peers will think of she needs a wheelchair that day. In fact, it is a huge relief. However, I do have a harder time getting her to focus (as opposed to before when she was quick as a whip and enjoyed every second.) I don't know when to say, "Let's just skip math today." and when to say, "You will be okay. I need you to pay attention." 

Update: I typed this in November during her after Halloween flare up. I am thrilled to say that her brain fog has (currently) subsided, and I feel like I have my girl back for the first time since April!!! 

I am learning to navigate how to figure out how she feels without being overbearing, without constantly asking or trying to help or telling her not to be too rough on her fingers when they are hurting. I have NEVER been that Mom. I said I never would be. I was always okay with climbing. What's the worst they can do? Break something? I was always okay with them venturing off. Kidnappers are NOT around every corner. Kids NEED these skills. Suddenly though, I find myself making sure she knows where her compression gloves are and carrying her padded seat inside for her if she forgets it in the car. I'm getting better. I really am. If she doesn't want those things for fear of what others will say, she will have to decide for herself if it's worth the pain she will have to endure because of it. I tried letting her make decisions on her food, but she kept making bad choices and causing herself excruciating pain, and I just couldn't watch it anymore, so I did take over that. However, as time goes by, she does see the effects of what she eats, and isn't so resentful of not being able to have the same things as others. (I'm sure it helps that we have found some treats she can bring to have when others have treats.) 

And last, but not least, I find myself making kefir and fermenting pickles. That is a bit of a story. 

I have always been into anything health related. I took College Anatomy my 11th grade year and ended with a 99. I went to school for medical language. (I originally wanted to go for occupational therapy, but I also wanted to be home with my girls, and medical language (transcription) seemed to open the door for that.) I read medical books for fun, but I have always been very reserved on any kind of medication, manmade or natural. Manmade for obvious reasons. Natural because it is hard to know what you body needs, how much of it it needs, or how it will react with your body or with other supplements. Too many people do Google searches and decide they need something or overdo a certain amount of something and end up causing issues. I digress, again. 

It wasn't until after Sara got sick and I decided I wasn't going to accept the lack of answers from the doctors, that I decided to get serious. Since April, I have spent hundreds of hours reading medical texts, books on various topics, medical journals, pouring over her 100+ labs, and interviewing people who have symptoms similar to Sara's. I need to understand this better. 

I have never been one to make things. I homeschool, so I am always in the world of kefir, kombucha, and sourdough, so I feel like I SHOULD enjoy those things, but I don't. I don't even like gardening. I just like the literal fruits of gardening. I am a practical person, a person who NEEDS to know why and how. When I get there, I am more apt to put in the effort. Well, I am there. I have seen how probiotics specifically manage her pain...so here we are. I have ordered some kefir grains and I am waiting on my fermenting weights to come in tomorrow. What is happening to me? I used to be cool. Now I am in my mid-30s making fermented pickles and telling my children why gut bacteria matters. 

I love my daughter. I love them both! I would do anything for them. I am doing everything for Little S that I possibly can to take away her pain and try to heal her without hurting her. Honestly, at this point, I am so thankful for the doctors' "refusals" to "treat" her, because it led us to where we are. She is improving and learning good habits for her health in the future. 

It breaks my heart that her "immune kettle" entered the world so full already. I know it isn't easy seeing your friends eat cinnamon rolls at the potluck or explaining why there is no bun on your burger. Some days its a struggle to convince her she needs to take her medicine, and I worry that she will not keep it up as she grows older and decides she is tired of it, but we will continue to take it one step at a time like we have done for so many things for so many years, and we will cross that bridge.....when we get to it. 

Update: Sara is happily taking her supplements because she is seeing and feeling what it is doing for her. FIVE WEEKS without the night sweats and constantly pain. She has minor pain in her legs still, but she can walk each and every morning. And play! And run and jump on the trampoline! This one is especially important because of all the special memories created on that trampoline. When Big S was 5, we bought it because she began gymnastics and wanted to practice at home. I never in a million years dreamed of all the kids that would jump on it and all the special moments that would be spent on it by them-jumping, playing games, camping, laying out and talking. We have replaced countless parts on it and it still leans sometimes. Even now that some of those kids are adults, they return and lay out under the stars. When Little S couldn't jump on it anymore, my heart shattered. I knew she was in pain to give up such a thing. It was a true balm to my heart when she began jumping on it again this Fall. ❤️

We have adjusted well over the last several weeks. We have found natural pain killers that work fast, purchased several heating pads, compression socks, and various items to help with the aches and pains (just in time for them to subside 😅). We are learning, and I am so grateful for the true healing God has led us to through functional medicine.

My girl is back. 

Almost On The Path to "Remission"

Things could be worse. 

And I'm really counting my blessings each day. 

I am tired sometimes. 

That's okay. 

Sleep-wise, I am chronically exhausted. 

Since April I don't sleep as deeply. I wake up tired. Like having a newborn. 

From her sleeping in my bed, to me waking in the middle of the night afraid she quit breathing. To now sleeping in her bed (since she has moved back to the sleep room) when she is in the middle of a flare up. 

But it's all going to be okay. It's just a season. 

In this season, I'm frustrated. So frustrated. 

I have never felt so let down by modern medicine's lack of understanding about the body. A specialist truly is just that. A specialist. They seem to lack knowledge about anything else but that one thing. 

Western medicine is great. If you are dying. I don't mean that as an insult. I was never promised anything more than what they are. It seems however, diagnostically, they are just as uncertain as the rest of us who feel forced to Google symptoms in order to get an idea of what is going on. (Something I have always hated, but recently feel I have to do.) 

And I am INCREDIBLY angry that I have been treated like the enemy, like just a dumb parent looking for attention. Like I just enjoy going to the doctor so I get a referral for every little pain or ache she complains of. 

Have we had some doctors that I felt confident had covered all their bases could before we left? Absolutely. We have had two. Out of....eight...maybe more. 

But never have I ever in my wildest dreams imagined that I would be talked down to the way I was today. Treated like a liar. Practically yelled at. My daughter being called a liar and being practically yelled at as well. Did I feel confident that he even did the first thing to make sure there was nothing he could do to give her some relief? Not. A. Chance. 

I'm beyond frustrated. My daughter is tired of going to the doctor. She doesn't want to be touched or asked questions one more time. She is tired of hurting all day long, every single day. She is wearing down, and I am just praying that her sweet spirit would just hold on a little bit longer. We are SO close. 

The Good News: 

She has started seeing a functional doctor. Not a naturopath. A functional doctor with a healthcare degree who understands how the entire body works together. 

A functional doctor who spent 2 hours with us on the first visit. A doctor who could look at my daughter's labwork up to now and tell me without a shadow of a doubt that she has an autoimmune disease. Not just that. He is a doctor who is still tracking down which kind so that we know what to watch for. A doctor who has already come up with a natural and gentle treatment plan backed by actual science. A doctor who didn't say I had to buy all my stuff from him. A doctor who finally said, "Yes. It looks like 5 different things, but it's all connected. Here is how." He showed me how. He discussed the WHY. 

I have known it. I have seen it all along, and it was a huge blessing for somebody else to finally see it without me having to say it. A doctor who didn't say, "How odd. That doesn't usually happen to children. I don't know why it happened to her. Oh well." But a doctor who said, "Easy enough. Here is how we fix it. Then we follow up to make sure it worked." 

We have some work ahead of us, but we serve a God who prepared us from the start. It was always going to be okay.