One of the worst phone calls I ever received was when Finn was about 14 months old. We had already learned that he has Trisomy 9p and the 9p24.3 deletion, but at this point in time we were making the rounds with the specialists and learning more about some of the specific problems he has. We knew he had two heart defects, hearing loss, orthopedic issues, urology issues, GI issues, developmental delays, swallowing/chewing issues, etc. and somehow I took most of those things in stride.
Finn's neurologist called me at work. His brain MRI results were in. I closed my office door and listened hard. The doctor said he needed Dan and me to come in and talk to him. I told him I was about to leave to travel on business and couldn't come in for another couple of days. He started going over the issues over the phone:
- Atrophy or encephalomalacia of the mesial temporal lobes and mesial temporal sclerosis
- Arachnoid cyst in the mid to inferior posterior fossa
- Prominence of ventricles and the extra-axial fluid raises the possibility of hydrocephalus
- Gliosis or dysmyelination in the right lateral ventricle
- Sinus and mastoid inflammation
We were referred to a neurosurgeon and long story short - we are not doing surgery on Finn. He may need a shunt at some point, but the fact of the matter is he is only showing mild symptoms right now and the poor kid has already been through 8 surgeries and had to be sedated for other procedures multiple times.
All of this thought, really makes me wonder why Finn is doing remarkably well given his MRI results and then I wonder why children, especially children with ASD or other neurological issues have normal MRIs. The neurosurgeon didn't have an answer for this. Then I heard of Brain Balance that really aims specifically at children with exactly this issue: normal MRIs but many neurological problems.
I stumbled upon an article in one of those neighborhood news articles about Brain Balance in Oldsmar. I'm really interested to hear if anyone has done this or wants to explore it. They have a free parent event coming up on Saturday, May 12th at 10am.
From what I understand they take a holistic approach to really find out what part of the brain is not functioning as it should. They start with testing - not to label the children, but to look for patterns in their brains. They look at nutrition and do a complete work up - blood/urine/stool (we did this for Finn and I do recommend it). Essentially, they are then placed in an after school program that is a 1 to 1 ratio that lasts for 12 weeks. The testimonials are amazing, but wondering first hand how expensive it is and if the results are as impressive as its website says they are.
Here is the link to Brian Balance http://www.brainbalancecenters.com/