This has the potential to be a long update, so I am going to break it up into three parts. The first, most important segment is about Abbie’s first week of rehab, while the second and third parts are especially pertinent to other brain injury families – so I hope you’ll read them when you have time.
Part I: Tears
We began post-op PT last Wednesday mostly just doing measurements and some sitting. Nothing too challenging, but we still got a few complaints when we didn’t support her knees well enough.
The next morning I decided to lay her on her tummy across a ball, to allow her knees to bend. We had some serious tears, and they weren’t all coming from Abbie. It is so very, very hard to watch her suffer, even for a good cause. It made the whole day heartbreaking for me, and took me to some very painful places mentally.
On Friday I had to miss PT to go to the dentist. Ray went to check on Abbie and Genevieve and called to report that he found both of them in tears. Ugh. By the time I returned to the hospital to pick them up, all was well, and I thought perhaps the dentist appointment had been a gift, to spare my heart of more than it could’ve handled that day.
Saturday was a bit better, and slowly I could see that things were getting easier each day. I told Abbie that this was just a process we were going to have to work through, so that she could do all the things she was excited about before the surgery: riding a bike, riding a horse, walking down the hall. I reminded her that it is safe now to move her body, as a lot of her resistance didn’t seem to be coming from pain but from fear of pain.
Monday’s PT was a HUGE improvement. She sat on a bench, with her knees beautifully bent and her feet flat on the floor. It has been four years since she was able to do that with ease. To pass the time on the bench Abbie dressed up a Mr. and Mrs. Potato Head by selecting all the various parts. No surprise that they turned out very colorfully: purple lips, blue eyelashes, pink ears, green nose…she loved it!
Yesterday I was able to lay her on that same ball with absolutely NO complaining..in fact she enjoyed it. Maria came to work with her and was very encouraged, which rubbed off on me.
At today’s PT session she was again sitting on a bench, but one that was topped with a rocking wedge. Her feet were placed on a scooter board. So, she would rock side to side, with knees at 90 degrees and feet flat. Then, we would stop and ask her to push the scooter board out. Once she figured out what we wanted her to do, she was very good at it. I was thrilled to see her USE her new legs. And, not one peep of discomfort. I am amazed at how quickly things are getting easier for Abbie. Friday’s appointment will included the fitting of her new foot braces, so I am thinking about going directly to Sports Authority afterward, because I was eyeing all the pink Nike shoes with anticipation on Monday…can’t wait!!
Part II: An Answer from the Stars
While Abbie was in the hospital a man I worked for years ago was in town, and part of his itinerary included speaking at a breakfast Ray would be attending. Back when I knew him he was a lieutenant colonel; now he is a two-star general serving as the Deputy Surgeon General of the Army. “Take a shot!” I thought. So, I did.
I drafted a letter to Major General Rubenstein explaining my interest in brain injuries, which are now the “signature injury” of our current wars, and imploring him to direct military research funds to defining and defeating the Nogo protein and other neurite outgrowth inhibitors. I included a number of abstracts from completed research, signed my name, prayed, and gave the packet to Ray to hand deliver.
Given the overwhelming demands of his job, I would have been very content with an email saying “Got it, will look into it.” I received MUCH more. I was humbled and overwhelmed that he took so much time to gather information, and I want to share some of the content so that other brain injury families can receive the same encouragement I did:
I have consulted with subject matter experts at the US Army Medical
Research and Materiel Command and the Telemedicine and Advanced
Technology Research Center (TATRC). There are several related projects
underway in this line of research.
The Christopher Reeve Foundation (CRF) is working on one project
with the “North American Clinical Trials Network (NACTN).” In the
research application submitted to the Department of Defense in September
2006, the CRF proposed that NACTN would evaluate a new treatment for
spinal cord injury: the neutralization of the axonal regeneration
inhibiting molecule, Nogo, by means of an intrathecal infusion of a Nogo
antibody. This proposal is on hold until Novartis receives FDA approval
to conduct a trial of its anti-Nogo antibody in the United States. In
the meantime, however, Novartis has expanded its Phase I clinical trial
from the European sites to several Canadian clinical sites, including
the University of Toronto.
The following related projects from the Northern California
Institute for Research and Education do not explicitly deal with
Myelin-Associated Glycoprotein (MAG) research, but they all touch
components of related pathways:
a. Novel Astrocyte Signaling Therapy to Promote Neuronal Regrowth and
Suppress Glial Scarring During Traumatic Brain Injury.
b. Promoting Neurogenesis by Suppressing Microglial Activation.
c. Role of TREM-2 in the Microglial Response to Brain Injury.
d. Promoting Recovery from Traumatic Brain Injury by Suppressing
There are a multitude of pathways involved and while scientists try
to find the golden target, it becomes increasingly apparent that
combination therapies driven towards multiple parts of the central
nervous system inflammatory and apoptotic pathways will likely be
required. There has been some promising work using an antibody in a rat
animal model by University of Pennsylvania and GlaxoSmithKline (enclosed
abstract), but the challenge is trying to get a molecule so complex
through the blood brain barrier and into the central nervous system.
Dr. Mike Kubek at the Indiana University of Pennsylvania has developed a
nanotechnology for moving proteins into the central nervous system via
the nasal epithelium that might hold promise.
TATRC also has a full proposal from Dr. Song Li at UC-Berkeley that
uses the phosphodiesterase-4 inhibitor rolipram, which has been shown to
overcome inhibitors of regeneration (including myelin breakdown
products) and promote axonal regrowth; and chondroitinase ABC, which
degrades chondroitin sulfate proteoglycans (CSPGs). CSPGs were also
included in the list of articles you submitted with your letter.
Additionally, TATRC has a Congressional project with the Citizens
United for Research in Epilepsy (CURE) Foundation, which includes
multiple investigator-initiated studies for the prevention of
post-traumatic epilepsy, including the prevention of astrogliosis
(inflammation of brain cells).
Finally, there were several discussions and research posters
related to MAG research at the Society for Neuroscience conference. Dr.
Ken Curley and Dr. Brenda Bart-Knauer, TATRC, spoke with Dr. Kubek at
different times during this conference. Dr. Kubek has worked with CURE
in the past on post-traumatic epilepsy and has submitted a grant
proposal for the nanoparticle delivery of peptide drugs to the brain.
He the ended the email with something that brought a huge smile to my face:
I hope this provides some insight on the work that is being done in
this line of research and gives you some comfort in your day-to-day
challenges. I’m reminded about the daily exhortation of my very first
battalion commander. He would remind us to “never give in, never give
up, never, never, never.” Your efforts are strikingly similar. Hooah!
I smiled because hanging on Abbie’s whiteboard is a little, square, black magnet with simple white letters on it — words that sum up our journey: “Never, Never, Never Give Up!”
Part III: Out of Left Field
I got a call yesterday that answered some of the deepest cries of my heart — cries for guidance and wisdom. Answers to questions that have been lingering, almost taunting us. Why can’t we get Abbie’s iron levels up to normal? Why are the basal ganglia (involved in motor control) always so affected by brain injury? What should I be feeding her?
You wouldn’t think there’d be a common answer to all those questions, but there is, and it revolves around a trace, non-magnetic metal called manganese.
Here’s what I learned from that call:
While manganese is important in trace amounts for metabolic functions, toxic levels produce symptoms that can mimic autism and Parkinson’s disease. This has been documented in literature as far back as 1819.
Excess manganese also inhibits the absorption of iron. You can think of these two elements like a teeter-totter. If not in balance, you can’t get the iron in to the body.
This would fit Abbie’s clinical picture, so I was very interested. But, then came a clincher.
Once excess manganese enters the brain the place it likes to settle is the basal ganglia, specifically the globus paladii. Of course, I hit Google hard last night, and found this remarkable quote:
“whole blood manganese levels were associated with hyperintense globus palladii on T-1 weighted MRI. Following liver transplantation, neurologic function improved, blood manganese levels normalized, and the MRI signal abnormality completely resolved” Liver disease in Children: Suchy, Sokol, Balistieri, p217
It caught my attention because on Abbie’s recent MRI her globus palladii were indeed “hyperintense”. Now, the condition of her brain is primarily the result of an injury, but given that the manganese issue fits her clinical profile, I think it could be a complicating factor in her recovery.
Here are a couple links for interesting articles about manganese, and particularly about how soy formula is an especially potent delivery vehicle for toxic amounts of it.
I was relieved to know that I’d been avoiding soy in Abbie’s diet for a long time. But then, I caught the next punch square in the jaw.
I do make all of Abbie’s food, but when I am running short on time, sometimes I use baby food in the mix. Turns out that baby food can have ENORMOUS amounts of manganese added to it. When one physician who is helping children affected by manganese toxicity tried to find out how much manganese is in baby food she ran into an interesting situation.
She looked on the jars to find that where an amount should be listed for manganese, there was instead a tilde (asterisk-looking thing). She called the FDA to find out what this meant, and was told, “That means the manufacturer knows how much is in there, but has opted not to report that to us.” What???
So, I have to stay away from baby food now as well. To put this into perspective, the maximum amount of manganese a child should ingest per day is 0.5mg. 100g of baby food with turkey meat has 30 mg of manganese, while baby food creamed peaches has over 15mg. And, without proper labelling, it is impossible to tell what how much manganese is in each different baby food. I looked at the canned nutrition we had given Abbie (Compleat Pediatric), to find that it had .5mg of manganese in each can. She was getting several a day. One other place where there is risk of excess manganese is in supplements: joint formulas including glucosamine and chondroitin often have large amounts of manganese added, so you may want to check the levels if you are using supplements like these.
I just received the “anti-manganese” diet that a physician treating children with manganese-related neurological conditions has developed. I have been CRAVING dietary advice ever since I took Abbie off of her raw milk diet. I am so very thankful to have some guidance. We will start it tomorrow. The physician has seen dramatic improvements in each and every child using the diet in 1-3 months. I am hoping it will help Abbie as well. The changes in the treated children have been dramatic, but I am not getting my hopes up too high, focusing instead on just trying to solve the iron issue.
If you are interested in looking at the diet, I will be happy to email it to you. Just send me a note at email@example.com.
So, it has been an amazing week of progress around here. Abbie is exceeding our expectations daily, and looking beautiful doing it. I feel that my Christmas came early, with gifts of information and insight beyond what I could have ever asked for. And, this past week I’ve run into so many people who’ve told me they are still keeping up with Abbie. You must know that especially on the hard days, when tears fall, that is the rope keeping me hanging onto the side of the mountain. Thank you!
May God bless you!