I sent out this email (text below) to friends and family to cast a wider net in our search to help Josie. Thank you to my sister-in-law, Jen for the suggestion. The emails I'm getting already are so heart-warming and helpful.
To anyone reading this, thank you.
The idea of this email is to help us find help for our daughter, Josie. We figure the more people we talk about Josie with, the more likely we are to find the doctor or person who can say, "I've seen this before." We're casting a wide net.
As of today, Sept. 14, 2013, Josie is one week away from being 22 months old. She is developmentally about 5 months old.
Josie's symptoms/diagnosis are: Global Developmental Delay. Hypotonia (severe), and CVI Cortical Vision Impairment. She cannot sit up unassisted, roll over, or perform anything above those milestones. Her head circumference is below the charts, and now her weight and height are hovering below the charts as well - although she has gained a little in the past month.
The first sign of something being wrong was at 4 months old when she wasn't tracking things with her eyes. We saw a pediatric ophthalmologist who told us to come back in 2 months. At six months old, she didn't meet any of the milestones at her pediatric check-up and we started the ball rolling with neurologists.
We first saw Dr. Ronald Jacobson who is the Chief of Pediatric Neurology at Westchester Medical. He did an MRI and (over time) multiple EEG's - two being 24-hour Video EEGs. All tests showed a normal brain. When we moved to Long Island last summer (2012), we switched to Dr. Joseph Maytal who is the Chief of Pediatric Neurology at LIJ. He looked at her MRI films and he also saw a normal brain and he sent us for complete genetic testing.
All the genetic tests came back negative. They tested for thousands of possible syndromes with a micro-array test, which is like an accordion file of the genes. So where they previously had to select which syndromes they are looking for, this covers thousands of potential genetic abnormalities. Plus, they tested specifically for syndromes given her symptoms.
Josie has also seen a pediatric endocrinologist, a metabolic doctor, a cardiologist, a gastroenterologist, several ophthalmologists, an optometrist, and the world's leading expert on CVI, Dr. Christine Roman Lantzy. She now has 7 therapists through the state-funded Early Intervention program, plus she goes to intense physical therapy (with equipment).
On the alternative front, Josie did 40 HyperBaric Oxygen Therapy dives, and saw a renowned scalp acupuncturist in New Mexico. I often speak to a spiritual healer. We're currently following a homeopathic regimen of supplements to detoxify her of toxins found in a naturopathy saliva test, and she often gets cranial sacral therapy.
We are open to anything that can help her.
So far conventional doctors have not given us a diagnosis, other than the diagnoses I mentioned. They have not been able to give us an etiology for her hypotonia and developmental delays. It's been a series of, "I know this is very frustrating for you, but you are doing everything you can do." On the alternative front, it's the same etiology every time and that is where the bands of controversy come marching in. They, including holistic MDs., all believe Josie experienced a degree of damage to her brain and nervous system due to toxic poisoning from vaccines.
Like I said, we are open to anything that can help her and we'll rule nothing out unless it can harm her.
We say that we’re in search of Dr. House - the one doctor who thinks outside the box and might have seen this before. Our thinking is that the more doctors who see Josie, the more likely it is to find that one who might know something more.
This is incredibly challenging, but we have so much hope for her. Everyone who works with Josie notes her tremendous will for such a little girl facing so many challenges. She tries so hard to move her little body. And she is making progress, albeit very slowly. And being so young, we’re confident that because she has brain plasticity, she can overcome this and begin to thrive - if we are on the right track. She's also just so loving, happy, sweet, and adorable :) (spoken like a true mom).
Thank you for reading this. You can read more about Josie's Journey on her blog www.josiedevin.blogspot.com
Please feel free to share this note with anyone and feel free to contact me with any thoughts: firstname.lastname@example.org