I am going to combine two posts into one. First, as promised, what does this all look like for Nolan?
If you’ve walked daily life with us over the last handful of years you can probably skip this first part. But for those interested…
Sometime in Kindergarten Nolan started to show some baseline signs of anxiety - nothing out of the ordinary for someone with his genetic predisposition though. Mom, Dad, and both sisters having a diagnosis does not leave one surprised when the caboose follows the rest of the train. As mentioned in a previous post, a switch seemed to flip in December of 2021 when Nolan verbalized his first suicidal ideation. He began therapy immediately. Looking back now, I can see the month I lost the happy go lucky version of Nolan. Over the next two years, Nolan began to struggle socially and academically. His struggles were not typical though- his grades were fine and all those that loved Nolan still loved him, but his ruminations and OCD thoughts had him convinced no one liked him and left him overwhelmed with completing basic school assignments. He did them but it was stressing him so much to do things that were so easy for a kid of his intelligence and academic ability prior. We continued to trudge through, found an amazing therapist who he bonded well with, and just kept trying different things therapy wise. Third grade was a beast. Nolan’s struggles seemed to be amplified. Socially, he was slightly better but academically, things became very daunting. He was constantly overwhelmed due to his inability to focus and he developed increased sensory issues. By the end of that school year we seemed to be at an all time low. Nolan was struggling to sleep despite every supplement known to man and enough melatonin to sedate a rhino. I took him to the pediatrician who felt like it was all anxiety related and felt certain it was time to try medications for anxiety. He placed Nolan on Zoloft and within a couple of weeks his ruminations and intrusive thoughts disappeared for the most part. Sleep was still a big issue and we spent the summer adjusting the dose with seeming success along way. Two days into 4th grade and our world seemed to implode. Nolan got out of the shower that night in complete distress and expressed suicidal ideations again. Long story short, we were referred emergently to a psychiatric NP who saw us a couple of days later and changed and added medications. Even longer story short, a few months later we found ourselves at a new psychiatrist who took Nolan off all five medications he was on and started fresh with a new one. Nolan was very depressed at this point and was having intense anxiety and intrusive thoughts. We also had a psychological work up done in October of that year, which gave us the following diagnosis: major depression, anxiety, OCD without compuslions and ADHD inattentive type. Dr Strickland took a low and slow approach. It was needed but perhaps one of the most painful seasons as a mom (and child) to endure. By Spring Break of 2025, we felt we had made significant progress. Nolan's depression seemed to have lifted for the most part, his anxiety was manageable and he was able to finish the school year out despite his biggest issues seeming to be sensory issues (noise and some continued overwhelm) but overall we ended the year strong. Over the summer, we continued to make small changes to meds in an effort to fine tune things. I held my breath as we went back to school the beginning of this year but comparatively, Nolan was doing quite well. For two months we felt like maybe normalcy would be ours once more. The weekend before his 11th birthday in October, we went to see Zoe at UNF and Nolan's dream of a sleepover with his sister in her dorm became a reality. Nolan developing Strep that weekend also became a reality. Within a few weeks, Nolan had completely regressed. He was anxious, not sleeping, overwhelmed at school and showing signs of depression and expressing suicidal thoughts again.
So where are we now? Two weeks ago we started doxycycline as I shared in my last post. Sort of on the assumption that Nolan may have some other infection at play-- potentially lyme. Pretty immediately we saw improvement in Nolan's sleep. He was able to sleep in his room again and fall asleep easily. Nolan also expressed to me that his sucidial thoughts and intrusive thoughts were diminishing. About the time we decided to stay the course with the Doxy, Nolan started to develop new symptoms- extreme fatigue (he already has been very fatigued since his flare began with the strep but this was way more instense). After sleeping a fulll night, he would nap for hours during the day and then sleep again that night. Rinse and repeat. He also developed strange rashes and profound itching. Then a few days later, enter extreme emotional lability. In the midst of all of this we had a planned late birthday trip to Disney (his first time). Last week, the emotional toll was so great we considered postponing the trip but he wanted to go and honestly, we needed some levity in life so to Disney we went. Through my own research, I had sort of already come to the conclusion that Nolan likely has lyme or some other lyme co infection or bot, and that his symptoms were consistent with herxing (see blurb) from the Doxy doing exactly what it was supposed to do. Our first day at Disney last week, was a disaster. We made it less than three hours and had to go back to the hotel. His fatigue was so great and he just felt like crap. Mother's intuition kicked in and I held the antibiotics that evening and the following morning and we tried again that day with much better success. By the third day, he was able to enjoy Disney for about 7 hours and we ended the trip on a comparatively positive note. Yesterday, I had a phone consultation with Dr. Ashley. He confirmed the belief that I had -Nolan is likely responding to the doxycycline and was experiencing herxing symptoms. We restarted the doxycycline last night. Dr. Ashley indicated that he may need to be on it up to six weeks or longer. It is very likely Nolan may develop the herxing reaction again and we will just need to push through it (not at Disney). I also took Nolan yesterday to two separate lab appointments. He was a champ about it all. The first was through our insurance to check some general inflammatory markers, immune things, and antibody levels. The second was a specialized Lyme and co infections testing through Igenex labs to hopefully confirm our suspicions about lyme. I find myself in this strange place of actually hoping for a diagnosis for the second time in as many months. There is something interesting about seeing your child struggle so much that you'd welcome any diagnosis that comes with a treatment and a plan to move forward. I am learning to become content with the fact that this will be a marathon and not a sprint. Our plan is to just keep moving forward in the direction of the finish line.
This was quite the novel of a post. If you stuck around, thanks. If you pray, please pray for Nolan to be as symptom free as possible when it comes to the herxing.
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