Chiari x 2

Alex was diagnosed with chiari, type 1 a few weeks ago. I knew in my heart that his diagnosis would be chiari because his symptoms are the same. Part of me wanted the diagnosis to know what we are dealing with and the other part of me was hoping it wasn't true. Another chiarian in our family? It's a lot to digest.
He is in pain. The pain in his head, arms, and legs is severe. His fine motor skills have gotten worse, rather than better over the last couple years. It's heart breaking to watch a child in pain and to have no control.
Chiari can cause significant symptoms in patients. The worst permanent problems include nerve damage, paralysis, and fatality. It can be a debilitating problem causing pressure headaches, incontinence, bowel problems, fine motor issues, respiratory issues, and more. My child could have problems walking, swallowing, and controlling his emotions.
It's a lot to digest emotionally. I have two children with chiari malformation. I have two children with autism. I have one child with a heart defect. I have one child with a ADHD.
The neurosurgeon wants to wait before doing surgery. Surgery is the only treatment for chiari and it isn't a permanent solution, it gives hope to slowing the progression of chiari. I haven't even said this out loud to many people. It's painful to write and painful to consider brain surgery on a second child.
I was fine with waiting on surgery because Alex is doing well in school. I didn't want to risk his success academically right now unless absolutely necessary. I also don't have the strength to go through another brain surgery and its possible risks. Even though Alex is more verbal than his brother, he isn't compliant. It won't be an easier process than it was with Gabriel. It might even be worse because I KNOW what can go wrong. I have lived it once before and my heart is still recovering from the trauma.
However, today the school nurse called me at 1:18 because Alex was in the nurse's office. His legs hurt. She didn't know what to do with him or how to help him. There isn't anything to do. The pain medications have huge risks and don't outweigh the possible benefits. This means I have to contact the neurosurgeon and make sure we are doing the right thing for Alex.
We also have appointments for Alex with a pediatric orhopedist and rheumatologist to confirm or rule out other possible issues. We will need to consider genetic testing as well. The neurosurgeon is concerned that Alex has EDS. EDS is a connective tissue disease. I don't know a lot about EDS but I've had my suspicions about it for months and haven't told anyone.
My heart sank when the doctor mentioned the possibility. EDS stands for Ehlers-Danlos syndrome. It is genetic and can cause a lot of problems in the digestive, excretory and cardiovascular systems. Some features of EDS include fragile skin that tears or bruises easily, tearing of the muscles and joints, unstable joints and more.
Our neurosurgeon has only seen a few cases of EDS in his pediatric patients which makes me more worried because to me, it means Alex's symptoms are noticeable to the NS. We will know by last winter what our next course of action is with Alex. I continue to figure out how to manage my emotions and cope with children who have life long serious conditions. The enormity of it slams into my being hourly as the anxiety grips my heart. I want to take their pain away and I can't. This is tough.