Referral Road

It’s taken me over a week to process and digest the information we received at Jackson’s initial Child Study Center appointment. I knew it would be a lot but you can never fully prepare yourself for what someone is about to say about your child. I just want to lay out the facts in this post and try not to get too emotional. I cope better that way. It’s been a lot to mentally go through, but I just keep praying and taking it one day at a time.

I wasn’t quite sure what to expect at the initial appointment, but it went pretty much as expected. His new doctor is a developmental pediatrician AND a neurologist. We got super lucky there! We went over his medical history, school records, assessments, and a physical exam. Based upon all collected information, he kept his diagnosis of static encephalopathy and ADHD. (Static encephalopathy is basically unknown brain damage not known by what caused it and/or what part of the brain is affected.) I hate that word. His anxiety was deemed impairing, so we are adding in an anti-anxiety/depression medication.

She (the doctor) ordered a sedated brain MRI so we can see the structure of his brain. We were also referred to one of her colleagues, who specializes in pediatric neurology. She is concerned about his movement, tremors, rigidity, and fine and gross motor delays. She said some of the symptoms mirror onset of Parkinson’s. She referred him to a neuropsychologist for clarification on his underlying cognitive and learning diagnosis. This will be beneficial for school staff and Jackson. We were also referred for genetics testing. We will also talk about a GI referral at his next appointment.

It’s a lot, huh? I knew it would be. I’m grateful to be on the right path, finally. Trust your instinct when it comes to your health or the one of those you love. I wasn’t happy with our pediatrician for the last 2 years and finally found one we love who was able to start the whole referral process to get into the CSC. I’ve scheduled his referral appointments, but with them being specialized, it’s going to be months again before getting in. It’s like the worst waiting game… almost like the more issues you have, the longer it’s going to be. I could be wrong.

Like any other parent, Donny and I just want the best for Jackson. We want to get him the help he needs, the sources and tools for him to grow into a thriving adult. I am so blessed to be able to stay at home, but people don’t always see what I’m dealing with on the other side of it. Jackson is just a regular kid and he loves his life. He loves his mama and dad and is one of the funniest kids I’ve ever known. We don’t need anything, but prayer and good vibes are always welcomed. And please be kind and gentle towards people, you never know what they are going through!

This Post Has 3 Comments

  1. Sandy Davenport

    He is so very blessed to have parents that are going the distance to assure that he has every opportunity to live his life to the fullest of his capabilities. Love and prayers for you all to have faith as you continue your journey

  2. Thomas Johnson

    May God continue to bless you as you seek for answers and solutions!

  3. Marion Sides

    I am so very proud of my daughter-in-law; she is absolutely amazing. Heather has researched, changed their diet, eating habits, done away with all chemicals in their home. This has been emotionally taxing, and I know there have been times (like all Moms) when you just want a quiet moment and a good long cry washed down with a glass of wine. I LOVE YOU, HEATHER SIDES

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