Ruling Out The Worst (Seizures No More – Part 5)
Although we felt we were taking the right steps toward setting up Justice’ body for healing, we did not experience much progress with stopping her seizures and after a month and a half into The GAPS diet and visiting with the NRT practitioner, things took a turn for the worse. Our daughter experienced her first tonic-clonic (grand mal) seizure. I hated life in that moment. At that point her partial seizures had evolved into generalized seizures. The mild seizures as we knew were now gone and now every seizure was much more horrific and traumatizing. Generalized seizures affect the whole brain causing her entire body to react. Our worst fears were becoming reality. Loss of consciousness, spasms, stiffening, shaking, muscle contractions, loss of muscle tone. All the terrible things. It’s almost as if you are losing someone before your very eyes.
My husband managed to start filming and was able to capture her first tonic-clonic grand mal seizure on camera. Needless to say, I won’t be sharing it, but it was an extremely traumatic event. The wailing coming from both my husband and I is just a bit too much to share. However, I took these two screenshots from the video. At this point she had just stopped seizing and was completely out of it. Her lips went blue. Her heart rate dropped and she was completely drained of energy. This was definitely one of the worst days of our lives.
It broke my heart to see that Justice had absolutely no recollection or understanding of what was happening to her body. After her post seizure naps she would wake up her happy and joyful self, and wonder why she was even in bed in the first place. It would pierce my soul. Because the seizures had become generalized our fear and paranoia had dramatically increased. We had to watch her every second of the day and night. While trying to properly care and be attentive to our other 3 children’s wants and needs. It was hard but we tried our best.
It was as if we were always just waiting for the next seizure to present itself. The new found level of paranoia increased as now the seizures were generalized. She fell over multiple times and hit her head. Busted her lips. Spilled food and drinks. Dropped glass cups while drinking. Cracked her teeth on random objects which she would place in her mouth and start to chew on. In the shower. In the tub. While she was sleeping. At the playground. In the car. In the trampoline. Everywhere. Multiple times a day. This was truly a nightmare. Not only were we affected but so were our other children. They were typically with her all day and would always be there to witness her seizures. They were so concerned and their little hearts broke all the same. The love and compassion they showed their sister still provided warmth to my mommy heart. I wanted this to end. I wanted to protect all of my babies from this pain and I wanted my daughter to be well.
The month of September in 2021 was eventful in all the worst of ways. We needed more answers and we needed to rule out all worst case scenarios. We began to make appointments. In my research and in my gut I felt the best tests to run would be an MRI, blood test and DNA stool analysis. I needed to see what exactly was going on her in body. We still held firm on absolutely no medications and no traditional western medical doctors, as we absolutely knew what the outcome would be had we decided to go down that road. We were not going to allow that. Our convictions were strong and I was not accepting an epilepsy diagnosis for my daughter. As hard as it was I KNEW we could tackle this naturally. Of course I was scared and always wondering if I was doing right by her. The more I researched epilepsy and the detrimental affects of seizure meds the more I felt in my gut this was not for her and that God was leading me in a different direction.
The first diagnostic test we did was an MRI without contrast. An MRI (magnetic resonance imaging) is a painless test that uses a large magnet, radio waves and a computer to produce clear images of the organs and structures inside the body. MRIs do not use X-rays so it is probably the imaging test of choice for people who need frequent imaging for diagnosis, especially for their brain.
Here is Justice’s MRI requisition form for a Cervical and Brain MRI without contrast. We needed to rule out space occupying lesions, tumors, abnormal blood flow to organs and inflammation.
Justice did so well. I was very proud of her. The MRI was 45 minutes long. She stayed still the entire time. The test was extremely loud and my heart broke as her little body was in that huge machine. I held her hand the entire time. I remember my back hurting so bad because of how I had to hunch over to do it. Once they finished they said they’d email the results to our NRT practitioner and that she’d go over the results with us. It was a grueling two weeks as we anxiously awaited the results.
After 2 and a half weeks had passed Justice’ results were in and by the grace of God everything was NORMAL! I went through the results with a fine-tooth comb. I researched all the brain terminology and familiarized myself with all of the parts of the brain and their functions to better understand the results and confirm that everything really was normal.
My husband and I were able to breathe a big sigh of relief knowing that we could now rule out any serious brain issues and that there was indeed no existence of any tumors or lesions causing the electrical misfiring in her brain.
GI MAPPING DNA STOOL ANALYSIS
The next thing we decided to do was test her stool. You can learn a lot about your health from what is going on in the gut and then subsequently what is excreted in your poop. “The Gastrointestinal Microbial Assay Plus (GI-MAP) is an innovative clinical tool that measures gastrointestinal microbiota DNA from a single stool sample with state of the art, quantitative polymerase chain reaction (qPCR) technology. The GI-MAP was designed to detect microbes that may be disturbing normal microbial balance or contributing to illness as well as indicators of digestion, absorption, inflammation, and immune function.”
Basically, instead of having a technician or physician looking through a microscope to identify microbes, the GI-Map technique identifies the microbe because their DNA is found in the stool sample giving us an extremely thorough insight into her gut (her second brain). Once I finished packing up the sample we sent it in and waited a few weeks for the results.
We were testing for:
- Opportunistic Bacteria
– Overgrowth Bacteria
– Autoimmune Triggers
- Intestinal Health
Once again, Justice’s results were in and everything was NORMAL!
Lastly, we wanted to run a few blood tests. We wanted to check in on her overall physical well-being while also searching for markers of possible diseases or other health conditions.
These are the blood test we ran.
- Complete blood count
- Comprehensive metabolic panel
- Lipid panel
- Thyroid panel
- Cardiac Biomarkers
- Coagulation Panel
- DHEA-sulfate serum test
- C-reactive protein test
Justice’s results came in and once again everything was NORMAL!
From a medical standpoint, there seemed to be no explanation as to why our daughter was having these seizures. After all the tests came back normal our NRT practitioner suggested that we see a patient empowered holistic pediatric medical practice and possibly begin seizure medications. That rubbed me all the wrong way. I ended up making the appointment to see what this practice was about and how they could possibly help us. I left that appointment $125 poorer with nothing gained but a referral to see a neurologist.
At this point I decided to stop seeing the NRT practitioner because it became obvious that our views no longer aligned. I took the referral knowing that this was not the route we were going to take. I was not going to see a neurologist and I was not going to get an EEG done. I knew where this road would lead us and I felt strongly from The Lord that this was not the path for us.