Don't settle with the 1st doctor

Published on 7 March 2022 at 14:30

As a mother who has been through the initial stages of diagnosis, medication lists, trial and error, and doctor after doctor, I would like to begin by telling you to ALWAYS trust your instincts.  If you do not feel comfortable with the provider who is looking after your child, it is time to look elsewhere.  Starting out, I had no idea where to begin, and I was simply too naive to believe that every doctor knew what was best for my child and could help me figure it out.  Unfortunately, you will encounter many doctors who are neither skilled nor prepared to point you in the right direction. 

My son's first appointment was with a pediatric nurse practitioner.  I started with hope and told our story from beginning to end.  This is a story that you will tire of.  There just seems to be so much to tell with each doctor, caseworker, school teacher, family member, friend, ER visit, and police officer....this story will continue to grow and change as your child develops. She told me I needed to attend parent coaching classes. She addressed me as if I had been parenting my child incorrectly. I could not get past the fact that my other children do not face the same challenges. They appear to be fine, with the exception of a lack of normal parent-child connection due to Mr. I's daily needs taking up most of our time. She decided that Mr. I was a child with behavioral issues.  Mr. I was scheduled for behavioral therapy during his first doctor visit.  

I returned home feeling much like a horse pooh.  I beat myself up trying to figure out what went wrong. I followed through on her theory long enough to realize she did not understand what it was like at home. He did not understand the consequences and felt he had done nothing wrong. Everyone but himself was to blame. She instructed us to begin "no consequence parenting." For example, if he violated a rule, he would be calmly told what he had done wrong. This was it. Begin from scratch and move forward.  As a result, we walked on eggshells. This resulted in worse behavior. He is very wise, even at such a young age. He had learned how to manipulate the situation.  He quickly mastered the art of trampling us.  It was extremely difficult to change things from here.  Routine is essential, and we had to switch parenting tactics yet again. We have been doing whatever was suggested to us since the beginning. Once again, this turned his world upside down, and it took us a long time to get through some major button pushing and meltdowns. Our search for a doctor resumed. I felt unheard and exhausted. I strongly believe that doctors should be more careful with their wording. It is very easy to say something to someone who has already been beaten down by the world of criticism, and we will be on high alert to protect our feelings. Having a lived experience is very different from learning something by sitting behind a desk and reading books all day. 

However, after switching providers, they began him on his first stimulant and diagnosed him with ADHD. Alright! We have it figured out. The doctor informed me that I was doing nothing wrong. My son exhibited typical behavior for a child with extreme ADHD. I could not believe how much he changed on the first day. As we sat down to eat as a family, we all talked and shared our daily stories with one another.  Mr. I began telling me about something that interested him.  This was a huge deal. He could not talk to anyone before this because he was so anxious.  When he finished talking, he grabbed my hand and said, "Thank you for listening to me, Mommy."  This instantly brought tears to my eyes.  WOW! I just had my first real conversation with my son.  This was a huge plus, but it was not enough to help me change his behavior and what I called "tantrums" back then. However, knowing what I know now (7 years later), it was the start of sensory meltdowns and overloads, as well as bipolar cycles peaking out.

We then started seeing a psychiatrist. We spent about 5 years with this one.  We were not sure what we were looking for at the time.  I believe that as time passed, I became a stronger advocate for Mr. I.  I just trusted that my child was in the hands of a professional with an education who would handle everything for me.  It never occurred to me that I should be an advocate. We kept riding the roller coaster, changing medications on a regular basis. Fortunately, over time, I was able to continue to educate myself. I realized that every time our roller coaster started again, this provider did not seem to know why. I got the impression that she was uncomfortable making medication adjustments for him and was wary of the hardcore medications for his age and size. I decided it was time to look for a new provider. I do not think she understood what I was saying or what we were dealing with at home. All of these symptoms got worse over time. When 2019 arrived, we were in the grip of a crisis marked by agitation, aggression, impulsivity, hyperactivity, suicidal ideation, and homicidal threats. This made me fearful and questioned whether my child meant what he said, "I am going to kill you in your sleep." We had three inpatient hospitalizations in the previous six months, and police were in and out of our home. Behaviors begin to spread beyond the home. My son could no longer mask. He was starting to lose control. Moods are not responding to the medications that this provider felt comfortable administering. He was rapidly cycling, but the doctor had no idea. At the time, no one knew.  From 2018 to 2020, my child was on 20 different medications. With a lot of going up and down, I switched brands to see if that made a difference. Nothing was working. His medications had reached their limits, and his aggression and symptoms were rapidly worsening.  We had decided, once again, that it was time to find a provider who understood my son's needs better. I never believed that what was happening was because Mr. I was a bad kid. I did not care what others thought; I knew his heart.  I knew this little boy from the moment he wrapped his tiny little fingers around mine. 

Between each inpatient hospital stay, my son's medication was washed and wiped, and his diagnosis was relabeled. This was all very confusing. Every doctor holds a different opinion, and everyone has new ideas about medication changes. 

So we looked for another provider who, at the time, worked with the county. She has since relocated, and we will continue to follow this incredible human. She was truly a blessing. I no longer felt unheard.  She was comfortable doing what we needed to do. She acknowledged my son's symptoms and officially determined that we are primarily dealing with bipolar disorder. She even facilitated meetings with our school system to provide them with the encouragement and knowledge they needed to work with him.

Our sense of calm, safety, and normalcy did not come easily.  There were numerous police calls, domestic battery charges (because this is the system), suicidal thoughts, two separate stays with day treatment at Northwest Journey, inpatient mental health visits, counseling, therapies, mentors, and growing support throughout our county that helped me process everything.

To be honest, this ride drains you so much and feels so never-ending that I considered a life without me. My mental health was suffering.  I felt so guilty and ashamed calling the cops and filling out police reports. After a very nasty crisis, I was sitting on a court filing to sign away my rights, preparing to let the system win. Not because I wanted to give up, but because I knew my son required assistance that I was unable to provide. In court, this is referred to as neglect. A parent who fights, begs, and pleads for assistance but is unable to obtain the intensive services required or funding for extended stays to better evaluate a child is negligent in the system. No words can express how powerless I felt. I was overwhelmed with guilt, shame, and what-ifs... I decided to make one last attempt with medications. I needed to find the strength to fight again. 

Lithium was the game changer, and his provider was on board! It gave my 12-year-old child his life back. His battles will always exist.  However, he has been able to slow down his brain and body in order to absorb and process the information required to cope with his difficulties. We are just over 1 year from our last crisis. What an incredible feeling. He has since made friends, gained confidence in his identity and worth, and is beginning to feel normal. It took a lot for him to even start school again. He was terrified of people seeing him as a bad kid. His diagnosis does not define him.  He is a playful, thoughtful, caring, intelligent, and loving little boy.  It is so good to see him bloom again. I understand that medications work differently for everyone, and that my parenting strategies may not work for you, but I hope that by sharing my experiences and understanding, other families will find peace. I hear you. You are not alone.