The process of doing what’s right for a child shouldn’t be so hard. When I chose not to medicate my three year old for ADHD never did I realize just how much I would have to fight to defend my decision in a world of providers who call themselves medical professionals. As a medical professional myself, I get it. We follow the evidence until the evidence tells us otherwise. It always takes the insurance companies a long time to catch up. Too long. If the insurance company won’t pay medical professionals can’t make money and medical professionals have big houses and fancy cars and a ton of debt from medical school that takes money to pay for. I get it. What I don’t get is throwing medication at a three year old child. Medication that will decrease appetite, impact nutrition and cause a laundry list of side effects that will likely require other medication. I don’t get starting at A before moving to T and I certainly don’t get why a provider would try to make me as a mother feel guilty for making what I believe is the best decision for my child.
What I do get is that the pharmaceutical industry is controlling the medical field and our society is becoming a bunch of medicated, socially awkward zombies and we are all doomed if we don’t start standing up for ourselves and our kids and taking a more active role in advocating for our health.
When my son was diagnosed with ADHD I was relieved. Finally, we had an answer to explain these behaviors we had been experiencing. Since we had a diagnosis that meant that there would be a doctor that we would work with for treatment. What I didn’t realize is just how broad the diagnosis of ADHD is and that there really isn’t one treatment that works for every individual. What I have learned is that you will spend a lot of time in what resembles a three ring circus trying to sort this all out and literally waste hundreds of hours spinning wheels and getting no where.
You have doctor’s to manage and you have school to manage and you likely have a job of your own and probably other family members to manage…not to mention finding five minutes to yourself in the day to do anything, including using the bathroom without interruption (will post about that later).
The past two months have been a whirl wind of doctor’s appointments and evaluations. We’ve had speech therapy, occupational therapy and vision therapy. Of course we started all of this with the recommendation initially of the Primary Care Provider for us to be seen by the Pediatric Neurodevelopment clinic at Kennedy Krieger. Kennedy Krieger recommended Behavioral Health (BH) outpatient visits and Occupational Therapy in the school to evaluate my son. We did the BH visits for a few appointments – they were 1.5 hours from home and I wasn’t seeing any improvement. The suggestions I was receiving were things I was already doing on my own. We stopped going. The school OT “informally” evaluated my son and said their was nothing “concerning” to her in the Pre-K classroom setting. I continued to go for follow up with the Neurodevelopment clinic. At the follow up visit I told them about the informal evaluation by OT in the school and “no concern” and they accepted that. Again, medication was recommended – again I declined. They recommended a Speech Therapy evaluation. I got on the waiting list and waited. We had already had a speech therapy evaluation and our son was receiving services at that time, but they wanted “their” own Speech Therapist to do the evaluation. I took my son for a three hour appointment after a 4 month wait and heard what we already knew – there is a Speech delay.
During my wait I continued educate myself and tried alternatives to medication. I made diet changes, I added vitamins. I changed bedtime, we started swimming lessons. I joined a support group. In the support group I started seeing a common theme… Occupational Therapy (OT) evaluation finding of Primitive Reflex Retention. 100% treatable with OT. Retention of Primitive Reflexes leads to behaviors which mimic symptoms of ADHD and often to misdiagnosis and mistreatment. I found an Occupational Therapist who specialized in pediatrics and had my son evaluated. I was surprised and relieved and angered to find that he still 4 of his primitive reflexes. These reflexes did not integrate and we the source of many of the problems we are experiencing.
There was also reference in the group to Vision Therapy (VT). In the OT eval there was mention of ocular motor dysfunction. I joined another group…found a Vision Therapist and paid for an evaluation. This evaluation confirmed the finding of the retained reflexes and found that because of this my son was having trouble fixating and tracking which would lead to problems reading and learning if not corrected.
I called the PCP to request referrals for OT and VT, I was told that the doctor would do the OT but they weren’t sure he would do the VT because he “didn’t believe in it”. My response was as follows, “You tell him that I did what he asked and took my son to Kennedy Krieger. I followed their recommendation and had and OT eval. OT noted a problem with Vision so I took him to another professional who recommends VT. So while he may not believe in VT, I don’t believe in medicating a child for a diagnosis they may not have.” I faxed the evaluation reports for him to review and later that day I received a call that I could pick up my referrals for OT and VT.
Mom for the win.
Learning to Walk in Stilettos 