I Want a New Drug…

I Want a New Drug…

A few years ago, I started a blog about our family’s decision to start eating whole based foods to combat some of the behavioral issues our son was facing. This included eliminating gluten, dairy, sugar and all things processed (more on that in a later post!) and officially made me public enemy #1! It was a great forum for me to share the trials and tribulations of turning my family’s diet upside down. I didn’t write for long, however. About 6 months after starting the blog, we made the agonizing decision to start medicating our little man, which ultimately resulted in my unconscious unwillingness to keep blogging. How could I have a blog about eating whole based foods and avoiding all things processed and synthetic and then go throw chemicals down my kid’s throat twice a day? What kind of hypocrite did that make me? Isn’t that exactly why we started down this path? To avoid this? A means to a different end?

Towards the end of summer 2013, the shit hit the fan. We thought summer would be a reprieve for him, a break for all of us. That was not the case. We were trying new homeopathic remedies left and right, testing for food and environmental allergies and plowing through therapy, yet nothing seemed to work. He was in a downward spiral and no one knew how to help him, least of all, his parents.

To watch your child suffer in such a way is crushing. We watched it with our little lady, and we prayed and put our trust in doctors and the chemotherapy they were pumping into her tiny body. And it worked. But this is a different kind of anguish. There are so many conflicting feelings. Half the time we struggle to remind ourselves that he can’t help most of his actions when we want to wring his neck. We analyze his every move and try to stay one step ahead of each obstacle, worry or tantrum that may be brewing. We completely changed our lives to follow a cleaner diet to help him, spent countless dollars on various therapies, and we still couldn’t help our tortured little guy.

What now? What’s next? The answer was nagging me in the back of my head but I couldn’t go there yet, I wouldn’t. That meant giving up to me; I’m not a quitter. I don’t fail. We charged towards the new school year hopeful that he would improve and maybe would have gotten over the whole fire drill thing over summer; out of sight, out of mind, right? No such luck. The next few days and weeks got progressively worse. He wouldn’t get out of bed or get dressed. We were forcing clothes on him and at times driving him to school in his underwear as he screamed, cursed and reluctantly got dressed in the back of our car. What kind of mother had I become? What was happening to our boy? How the f did we get here? He was in mental agony and I couldn’t help him. Doctors told us what to do with the little lady. We had no choice. Give her these drugs or lose her. Don’t worry about the long term side effects and potentially life-changing repercussions; save her. But this was different, right? He wasn’t sick like his sister had been, right?

Then, the unspoken was verbalized. At an emergency pow-wow with his incredible team after a particularly terrible morning, medication was suggested. I broke down in front of this group. I had lost, I had failed my beautiful son.  He needed more than I could give him. We tried everything we could, and it wasn’t enough. I wasn’t enough. He was broken, we all were. All I could think about was, is this how the tragedies at Columbine and Sandy Hook started? Troubled, misdiagnosed boys who were once happy and full of promise. Parents who tried but never got it right. Parents who didn’t have the support to make the tough decisions and push until they got answers? He needed help. I needed help.

SO, that meeting led us to a psychiatrist and endless sobering intake paperwork that has many dried tear stains in its pages. After spending about 15 minutes with the man, this new doctor rattled off a list of extensive diagnoses that included Aspergers (now ASD), ADHD, anxiety disorder and tic disorder. Quite the resume for a 7 year old.

We started him on a low dose of Prozac for the anxiety and Clonadine for the tics. I had my own anxiety going to the pharmacy: is the pharmacist judging me? She probably thinks I’m unfit, just rushing to medicate any quirk like so many people do. I could barely look her in the eye. Is this right? Should we be doing this?? Then my mother imparted some beautiful wisdom. She said: “Why should you treat his illness any different from his sister’s? You didn’t think for one second not to medicate her!?” Cue “ah-ha” moment. DUH. And herein lies the world-wide stigma with mental health. Do I feel one ounce of guilt for throwing toxic chemo at my leukemia-laden daughter? No. Yet my son has struggled for years and it took us all to hit rock bottom for me to help him the way he needed to be helped. Am I proud of that? No. But I’m here now.

After starting medication, the change was night and day. He was happy! He seemed more relaxed and had minimal issues at school, walking in on his own every morning with a smile. We could breathe at home. For the first time since he was a toddler, the holidays were enjoyable and not full of meltdowns and tension. Life was so sweet; as close to “normal” as we had ever experienced. But the relief was not long term. Over time, his body became acclimated and the initial euphoria wore off. We spent 2 years in what felt like a never ending hamster wheel. Some days and weeks were great, and then it was like we were back to the starting line. The fire drill fears never really went away, and as he got older, the language repertoire only got more cringe-worthy.

This fall, his demeanor totally changed at home and his outbursts were becoming increasingly violent. He is still a scrawny little thing, but we know there will come a day when we can no longer restrain him, when necessary, and that we were not maximizing the medicinal benefits. At the suggestion of his doctor, we had him tested by a genome lab for compatibility, and low and behold, he was incompatible with EVERY SINGLE medication he has been taking for the last 2 years. This both made me angry and relieved in the same breath. To think we had been spinning our wheels for two years was beyond frustrating, but now there was a new glimmer of hope that maybe drugs that better match his genetic makeup would give him (and us) the support he needs!

Then came the hard part: detox. We took the entire month of December to slowly wean him off all three meds, one at a time, with the last med leaving his system on December 25th…Merry Christmas to us! At first, things were going really well. He didn’t seem too aggravated or irritable. He was even somewhat functional at school…maybe we would escape this. Maybe we will learn that it was a rough phase in 2nd grade, that he actually hasn’t needed meds this whole time and we can finally stop with all these GD pills. Aaaand then reality slapped us in the face. Before we knew it, break was over. We were back to school and back to fall of 2013, like we had never left. Refusing to get out of bed and get dressed, disrespectful and defiant to us and his teachers, unable to sit still, blurting out obscenities with no filter. It was bad; it’s still really bad.

After 30 days of detox and 2 weeks of zero meds in his body, we started on a new regimen with compatible drugs. He is moody and tired, and it’s impossible to decipher potential side effects of the new prescription vs what are residual effects from having zero meds for so many weeks. It’s a crap shoot, and he is, once again, our little lab rat. Tonight during our cuddle time I asked how he was feeling, how his body was feeling. “I feel sad, I just feel really sad. What the hell is wrong with me?” Insert knife in heart. I had to repeat the words of his doctor that make me physically ill every time I hear them: “Do you feel like you want to hurt yourself, bud?” Thank God his answer was no, but why am I having this conversation with my 9 year old? It’s not normal. But I know we must stay the course, and I know he cannot be successful at this point in his life without these new drugs.

At the end of the day, I also know there is no magic pill, he will always be our little work-in-progress. We will continue to marry medicine with behavioral therapies and alternative techniques to try and help him be the best version of himself. There will always be bad days when I question this path, but I’ve learned to accept that it doesn’t mean I gave up on my goals and intentions, and it in no way means I’ve given up on him. Is this the end result I had hoped for? No. But the ultimate outcome is to have happy, thriving children in an imperfect world, and that’s something I’ll never stop striving for.

  • H | Vivid Hue Home says:

    Xoxox I know your story all too well! Thanks for actually having recourse to share.

  • H | Vivid Hue Home says:

    Ps- I meant to write thanks for having THE COURAGE to share!

  • Stephanie Patton says:

    Thanks for sharing this! We’re also riding the roller coaster of medication management at our house with our daughter who has Asperger’s/HFA (now ASD), ADHD and anxiety. I am also forced to ask those same “hard” questions to my 9 year old, but if that’s what I must do to allow her to be a happy, thriving girl, it will all be worth it.

  • Shannon N says:

    I feel your pain in so very many ways. Go easy on yourself, you are giving it your very best. Keeping you and your family in my prayers.

  • Sarah says:

    My heart is both breaking and bursting-I could have written every word of this myself. My son is in 7th grade now, I wish I could tell you it gets easier, but it doesn’t, the struggles just change. But acceptance of “no cure” and “work in progress” makes it little easier to breathe and take one day at a time.

  • Becca says:

    As a mental health professional, but more importantly a friend, I am in awe of you and your family’s strength and love. ❤️

  • Kelly says:

    You’re amazing! You’re kids are so lucky to have you as their mother and advocate! Love you all!!!

  • Carmela says:

    This is a very powerful story and I sympathize with all you have gone through. You are very courageous in sharing your story, and I admire that you want to make your son to be the best version of himself. He is very lucky to have such a caring and compassionate mom. I have no doubt he will be the best version of himself with you there to support him. Stay strong and hopeful, you will find the right mix of medication to help him.

  • Liberty says:

    Your writing never ceases to amaze me. You are one incredible momma. Always going above and way beyond for your littles. An amazing example to all mothers.

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