Sweet Carter's Journey With Dystonia

Update:

Here is the list of items that lowered Carter’s pain to ZERO in Louisiana! Unfortunately none of these are covered by insurance.

Neurosolutions red light laser 8,000

Near infrared light panel $1000

Stimpod NMS 460 $2,995

VenomGo $129

Red Eyelights $190

Robot Focuboody glove $100

InterX Pain Treatment device $1,800 + soft tissue electrode $350

$600 tests he takes every 6 months.

$300 per month of detox supplements.

Carter just finished a grueling week-long intensive at the NeuroSolution Center in Lake Charles where he experienced some incredible progress! Unfortunately sweet Carter's battle has only just begun.....To help him continue his journey at home his family could really use some support purchasing the medical equipment and devices that his doctors have recommended. They are so appreciative of your prayers and support!

Carter's story from his momma's perspective...

In November of 2021, we were in a car accident. The car was totaled, but there were no injuries. During the weeks that followed, I remember keeping an eye on the kids just to make sure that they were all truly uninjured. I noticed that Carter was often holding his right hand at a weird, unnatural angle. He didn’t seem to be in much pain, but my mom gut was telling me something was up, so the investigation began. I took him to our regular pediatrician who sent us for an x-ray and some blood work. Everything was clear, but when he got the x-ray he couldn’t keep his hand still or even flat on the table. They attributed this to him being a 7 year old boy. We were told just to keep an eye on him and start some occupational therapy. Over time, we started digging up every single memory of when he had been hurt in the last year; falling off the playground monkey bars, off his bike, from high places. Did he land on his hand? His arm or shoulder? His occupational therapist, who has now become a sweet family friend, worked with him for about 2 months and then noticed that his right hand was improving, but his left was now showing signs of the same strange muscle tightness and position. She is always so kind and gentle in how she discusses things with us, and she was very concerned and recommended seeing a neurologist. Back to the pediatrician we went, who was also very concerned. Now we knew that this most likely wasn’t an injury. He recommended a specific neurologist at Children’s and the waiting game continued. Ricky and I were still pretty chill at this point. I think both of us were just focusing on day to day life and going about business as usual and hoping it was nothing.

Our first visit to the neurologist was pretty uneventful. After describing Carter’s symptoms, he seemed puzzled and really had no answers. He asked us to think about doing some genetic testing and maybe an MRI, but mostly just wanted us to keep an eye on Carter and continue occupational therapy. We headed downstairs to get bloodwork and hoped for the best. Genetic testing results take a long time to get back and so we just waited, still thinking it was probably nothing. A month later, no improvements being made, and no genetic testing results, we were headed to Liberty Children’s for an MRI to continue the investigation. It was one of the first times that I was hit by a barrage of emotions. I suddenly felt the seriousness of the situation and desperately wanted answers for my kiddo and yet didn’t want them. Carter was so scared at the beginning of the test. Those of you who have had an MRI or whose kids maybe have had one know that it’s a weird thing to experience. The people at Children’s were wonderful and helped Carter tremendously. I could barely keep it together. Something was up and I knew it. My mom gut was crying out and I was crying out to God.

Then there was the day we got the phone call. I told the kids to turn on a tv show and rushed upstairs in the privacy of my room so that I could actually hear. It felt like everything was in slow motion as he said, “Mrs. Grantz, this is Carter’s neurologist, Mr. _____. Please sit down. I have some news. This is going to be hard. Carter’s MRI showed some abnormalities in his brain. And his genetic results show that he has something called dystonia. This is progressive disease with no cure. I’m so sorry. We are here to support Carter in any way we can. Mrs. Grantz, please do not youtube or look anything up about dystonia. You are going to see the worst cases and they are bad. Please come in soon so that we can discuss options for Carter.” What do you say? I was trying my best not to sob over the phone. Choking back tears, I think I remember saying “ok” and “thank you”. And then I called my husband. He was so quiet. I could tell he was digesting everything. I hung up the phone and just sat and stared. I didn’t want the kids to know anything yet. But, was I supposed to just go downstairs and continue my day as if nothing had happened, when my child was just given a lifelong diagnosis that would only get worse over time?

Nothing much happened the next few months. It was summertime, and we were simply enjoying it. We kept up with Carter’s therapy, and had our follow up with the neurologist, but there’s not much to tell. They wanted to put him on some medications. I felt unsure and wanted to wait, knowing this could very well mean the beginning of a lifetime of pills. It just seemed hopeless. All of it. It seemed like we were just supposed to accept it all for what it was and that’s it. I am pretty good about focusing on the positives and the hope that’s in Jesus. That’s the general mood I took with the whole situation and the family. Jesus is in control. He will make a way where there is no way. But how, I had no idea.

That fall, 2022, there was a light! Some hope offered from an unusual place. As some of you know, my sister has suffered from CRPS for years. She had visited a place called The Spero Clinic and through conversations with others had heard about a doctor who worked with dystonia patients. She talked to me about it and set up a zoom call with the doctor, Dr. Kyle Daigle. I spoke with him for over an hour and he also spoke briefly with Carter. He said that many of the dystonia patients he works with have shown a high level of mold in their bodies. I read Carter’s MRI to him and at the very end of it, one sentence long, was the information that I had dismissed thinking it unimportant. For Dr. Daigle, it was very important. He recommended a mycotoxin test, a special urine test, that shows if there is mold present in the body and what kind of mold, as well as how much of each mold. I feel like at this point, most of my family was not sure what to think. Mold sounded so far away from anything that could be going on with Carter. It was hard to see how it was connected. But a short time later, we got the test results. There were very high levels of mold in Carter’s little body. Dr. Daigle met with me again and suggested some detox methods to try that would help flush the mold from his body. I felt so energized by this hope! Yes, Carter had a genetic disease, but it didn’t have to be a death sentence over his life. There was hope in helping him and his body! Hope in him living his best life possible!

We have spent the last year doing what Dr. Daigle has suggested, and in the spring we found out that the levels of mold in his body have in fact gone down. Amazing! I don’t know where you are on your health journey, but I do know that there are many factors that play a part in how disease affects your body. It’s not that eliminating the mold will heal the dystonia. It’s there and will stay there until the moment he is healed by my precious Jesus. It’s that getting his body as healthy as possible will help his body handle dystonia better. It will decrease or even eliminate symptoms. And this comes with many things that I would love to share over time. Things that can help us all. Disease doesn’t have to be a death sentence. We just have to dig a little deeper and take a look at what might be really going on in our body. How is food affecting us? What life stresses do we have? Environmental factors come into play. Does your house or workplace have mold that you’re breathing in daily? Is your gut healthy? I’m happy to share things that have helped us if you are interested. But it’s all a journey and it’s different for everyone.

Then this past winter, I hit a wall. I hate admitting it, because I felt so defeated and that’s really not how I live. My glass is always half full. My Jesus can take care of anything and everything! But we all have our moments, be it days, weeks, months, or years. It was February, Carter’s birthday month, and I was grieving daily. I couldn’t see the future. All I could see was my child hurting and struggling and I hated it. I was angry with God. I felt loss over what Carter may or may not be able to do in his life. What would his life as an adult look like? How would other people judge him? I was just so sad for my sweet baby and this thing that he would have to carry. I was on the verge of tears everyday. I had lost my usual positivity and hopeful attitude. All I could see was loss. And I was missing out on the joys of life with my husband and family. Then one morning, God sat with me at my kitchen table. It was one of those rare moments as a mom of four where no one had heard me tiptoe downstairs. I was alone with God. I was sitting there unable to read my devotion, because of the tears filling my eyes again. He said something short and sweet to me and I wrote it down, because I knew there would be many times I would need to be reminded. He said, “I have better plans for him than you could have ever even imagined or dreamt up”. I read it every day for a while. I’ve read it to Carter many times. There is healing in his wings just for Carter! And God reminded me of Jeremiah 29:11. “For I know the plans I have for you,” says the Lord. “Plans to prosper you and not to harm you. Plans to give you a hope and a future.” I’m not going to pretend like I don’t struggle still sometimes, because I do. As so many of you have experienced, having someone you love that’s given a bad report by the doctor is devastating. And no matter what, sometimes you have those times where you slip back into sadness and fear. When those days happen, I just shift my focus back to Jesus and His goodness that’s all around me (usually with the help of a loved one). One night, when I couldn’t quiet my mind, Carter looked at me and said “Mom, I know why God allowed me to have dystonia. It’s because he knew I could handle it and He’s going to use it to help other people.” Yes he is my sweet child!

As this summer has progressed, Carter has seen an increase in pain and also where the pain presents itself. Sometimes, his hands or feet are so tight that he almost looks like he has a charlie horse. He doesn’t complain much. He’s a very happy, lighthearted, tender, and introspective child. He’s a deep thinker and doesn’t want to rain on anyone’s parade. But pain is hard to hide even if you don’t say anything. He’s gotten better at at least telling me and whispering in my ear. Then, we quietly pray and figure out what’s going to best help him in that moment. He doesn’t really like other people to know when he’s struggling. We have acquired lots of tools at our house over the last year that can help lessen the pain, but nothing takes it completely away. He has good days and bad. The good are so good that you almost feel like things are “normal”, but the bad are a blow to his spirit and crush my momma heart. I can see him noticing the way this often separates him from other kids. Kids want to fit in and being different isn’t always seen as a good thing, no matter how hard we try to tell them. His hardest moments are often at night. He struggles with anxiety now and sometimes night terrors. His pain increases at night. I find myself even more of a light sleeper than ever and beyond thankful when I wake up some mornings and realize that everyone slept through the night. A new day, a sunrise, has taken on new meaning. His mercies are new every morning. Lamentations 3:22-23, “The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness.” I love watching the sunrise from my kitchen window or back porch and marveling at His greatness and mercy. I couldn’t do anything without Him. And I tell Carter and all my kids the same thing often, in hopes that they too will lean on Him. As my husband and I have been learning to lean more on Him together, we’ve been praying for guidance in Carter’s situation. It’s so easy to try and fix things when he’s having a bad day. “We need more testing. More information. A different neurologist. Maybe we should try (you name it).” Etc. I don’t know why I’m always surprised by the goodness of God. When you finally surrender your worries and fears there is such freedom. “Be still”. In the stillness and peace, you can hear Him so much better. And life doesn’t feel so heavy and overwhelming. You don’t worry about tomorrow, you focus on today and loving the people around you the best you can. The world’s giant problems are overshadowed by the hope that lies only in Jesus.

So, that leads me to our current scene. A family member is sending Carter and I to Dr. Daigle next week. The doctor that found the mold. The doctor that noticed the important information on the MRI that no one else thought was important. The doctor that has given us hope just over the phone, The doctor who is traveling the world to tell others about these amazing therapies and brain transformations he’s doing. The doctor who has helped people that the world and the medical community said were “hopeless cases”. And Carter gets to go SEE him in person! This family member has taken care of everything, leaving us only to focus on getting Carter better. This is a huge gift. No strings attached. Something that at the moment our family would not be able to do without significant help. I am so thankful and so hopeful. I can’t wait to see what Jesus is going to do. This will just be another part of Carter’s journey. I’m going to do my best to share while we’re there. Thank you so much for your prayers! Expect big things!