Updated: Oct 13, 2019
Do you as a CHD Adult, or your child with CHD struggle with failing tests?
Have you been told you have ADD/ADHD or your CHD child does?
Have you thought about seeing a neurologist or taking your CHD child to one?
Stop thinking about it and just do it! ;P
It will change your life.
Almost one year ago was when I wrote this blog, but I wanted to re-share it because of how important it is to keep in mind the information below! I also wanted to include an update since I have had neuro testing done this year (2017) and finally got back the results.
#1: Know you're not alone - whether you are a parent or child fighting with failing tests and/or extreme anxiety during tests.
#2: Need to create a system with test taking - I highly advise you NOT use the system I created in third grade. Although it worked flawlessly all the way through college; I still don't recommend it due to technology and the endless resources there are now to help students take tests.
#3: Every single CHDer is different however it is finally officially known we do all have different forms of neurological damage due to our heart surgeries, lack of oxygen and low oxygen for our whole lives. It is very helpful to get neurological testing to find out the parts of your brain that do not work either at all or are slow.
No signs may show until adulthood, or if they are prominent as a child and attended to, they can improve with the right help.
Update since original Blog:
Please check out the first blog "Failing Tests in School" by clicking it. Recently, I finally got all of my neurological tests back and it answered SO many questions for me and my loved ones about the reality of what is wrong with me because of where I have permanent brain damage due to long term lack of oxygen on heart lung machines as well as multiple head injuries outside of CHD. You would never notice by talking to me for a few minutes but I can feel my struggles and only people who are in my life everyday can notice my struggles because I have become a professional at hiding them due to growing up with ZERO resources for CHD.
This is why I am sharing this because now there are SO many resources for CHD children - please have them see a neuropsychologist and not just a therapist and / or have brain tests with a neurologist.
Seeing a neuropsychologist has literally CHANGED MY LIFE after 15 years of seeing just therapists who don't actually study the brain in depth or have their PHd. I'm extremely thankful for all of the therapists who have helped me so much along the way, but they are not best for people who have health conditions that affect the brain because they don't understand them, all they often do is medicate you and try to tell you you have some mental illness that you find out years later you don't even have.
A couple things many of us seem to struggle with are processing, remembering things, being long wended- talking (or writing lol) non stop sometimes about things that have nothing to do with the subject (ahaha), staying on topic, staying focused for a "normal" period of time, remembering events/ numbers/ objects/ shapes in the correct order, recalling information we learned in a certain order, and have what SEEMS is ADD/ADHD, but it's actually our brain damage from heart surgeries that mimic ADHD and most of us do not actually have it. (Those are just some of the things that were discussed at the CHD Neuro Conference they have found that just so happen to be some of the exact things that came out on my neuro tests).
Please be careful giving your child ADHD medications until they've been tested with a neurologist because not only are some people saying ADHD meds cause heart damage, but your CHD child may not actually have it. They might but I'm just suggesting to double check with a neurologist as well to be safe since we have new information now!
We DO have many of the "symptoms." - Aside from living it and seeing it in multiple CHDers myself through interviewing them who don't have ADD but seem to, I learned this in the last couple CHD Conferences about how CHD affects us neurologically. I also have CHD friends who DO have ADD/ADHD- Please see video of "5 HLHSers Answering Questions" on my YouTube channel where one of my friends with HLHS and ADD talk a little bit about it.
My YouTube video called "They think we're Craaazyyyy" is where I talk about how these doctors & therapists are taking a CHD child whose bodies have been through SEVERAL extreme mental, emotional and physical traumas and applying information they learned to treat NORMAL HEALTHY Children and Adults and applying it to US, and it needs to stop because they do NOT understand the severity of what our little bodies and brains have been through and the permanent affects.
Please just consider this information and talk with your Cardiologist about it and request your CHDer see a Neurologist or a Neuropsychologist. It is like a breath of fresh air that you didn't know you needed!
This was one of the many CHD conferences I have been to in the past year that taught me what I already knew deep inside but thought I was alone so I buried it - neurological problems with CHD. I was also asked to speak at this conference about being an adult patient with CHD and how I was affected neurologically. I am SO thankful they are finally talking about this!!! I'm sorry I cannot find if they have notes online. I had my own notes which I shared in this blog. If you can find them online or have any from other conferences, please share with me so I can update this for everyone!
Feel free to check out my old YouTube Video: "They Think We're Craaazyyyy" Lol ;P
I encourage you to share your experiences below as well - this is how we create history and get answers - we talk to each other and share our experiences!
Cheers to creating history together CHD family!