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Shawn, originally New Yorker, transported to Tennessee for a few years, chased the love of his life in Iowa, only to move her back to Tennessee. Rachael, small town Iowa girl that traveled the globe to find her love in Tennessee. Little did we know how much our lives would change when Little Miss Magdalyn Joy entered the world. Join our journey through the unknown of Maggie's medical issues, known truths of God, and the nuts and bolts of life.


Dr. Mom's Manifesto

I know that I have brought up various bits and pieces of some of my thoughts along this way.  I ended up emailing our neurologist the following to explain some of my rationale for bring up some seemingly obscure things.  I thought it might be beneficial for those of you following our journey to see how some of these pieces go together in my mind.  I just copy and pasted from the email, so keep in mind, this is a portion of an original email to our doctor...

I am confident there is more going on with her spine, vagas nerve, CSF, etc.  Is there more you can do to test the functionality/motility of these things?  Though I continue to gather more information, and the puzzle continues to get bigger and bigger, my overall theory of what is going on with Maggie has not changed that much at all.  I think her spine/cranium have been compromised.  I know you look for big structural issues, but I am convinced, that even the slight issues play a role.  Just yesterday, her sacrum was able to relax and drop a bit.  Our PT described it as being jammed up a bit.  There is no doubt in my mind that her breech position and C-section played a role in all of this.  The contractions of jamming her spine without being able to move down the birth canal, the abrupt pressure change with the incision, the jarring of her out of my small incision.  I don't think any of it is malpractice by any means, but I do think it plays a role.  On top of all that, she didn't receive the natural alignment of traveling through the birth canal.  Nor did she receive the natural exposure to bacteria, because she didn't pass across the perineum.
Due to my lack of concern for truly healthy eating habits up to this point, a whole other realm is opened up.  I know that not much stock has been given to my gluten suggestion, as "that's a GI thing", but the more and more I research, I discover how much the integrity of our intestinal health affects the lumbo-sacral portion of the spine, and in turn affects the rest of the body.  I have a lot of trouble not believing that even minor inflammations and disruptions wouldn't play a role in affecting other parts of our intricately complex systems.  Some of my questions still go back to diet in general.  Between consuming GMO's and gluten, I'm sure the walls of the intestine have been harmed, causing a malabsorption issue and/or allowing undigested food to enter the blood stream, which in turn causes the body to want to attack it and go a little hay wire.  Also, inflammation of intestines and constriction in the fascia (whether subtle or not) adds additional strain/stress to the lower lumbar region.  Up until the past couple of weeks, she has had quite the restriction in her sigmoid, not allowing toxins to leave the body as easily.  There is no doubt that my diet and our therapy has assisted this in getting better.  I have started an elimination diet and am trying to reintroduce foods to see how she responds.It is my mission to identify the specific food/types of proteins that aggravate her systems and the ones that facilitate optimal growth (ex. I have tried to add more salmon to my diet to increase the intake of omega-3 fatty acids.)  Are there things specifically I could be avoiding to aide in stabilization of her body?  After some research and speaking with other moms with children with neurological issues, I'm intrigued to know what you know in regards to carbs, sugars, GMOs, etc. and the affect you believe they play in neurological issues/seizure control.  If you are thinking it is potentially a metabolizing issue, are there certain foods that would contain specific nutrients to aid in the metabolizing?  Or ones to avoid?  I'm sure there will be errors in all of this on my part, like consuming more nuts and dairy, when those were probably issues (possibly causing the vomiting)  But, it is all worth a shot in my eyes.
I am still concerned that 1/2 the Clonazepam is aspartame, particularly if she is having a trouble metabolizing sugars.  There is no doubt in my mind that it is helping to keep her stabilized, but could it also be creating issues?  Another concern is with the Trileptal, and I know you probably hate the, "another mom ...", but I know of another child with a rare condition that had an awful reaction to sodium blockers.  I don't necessarily think she has a reaction, but if it isn't very effective with controlling the seizures, then is it something that needs to be in her system (potentially having adverse issues)?
By no means do I think we need to pull change everything up, but I do want to make sure we are being mindful of these things.  And genetics in the whole pictures.  I'm sure there probably is some sort of mutation/disruption somewhere.  I can't image with all the toxins that we are subject to that there isn't.  And that's where my ponderings rest with the chicken before the egg or egg before the chicken....could the mutation have prompted the malposition in the womb, troubles with malabsorption of nutrients, etc...?  I think any research that can be done to find correlations between similar kiddos and aid in treatment would be extremely beneficial.
I know for us that our physical therapist has been extremely helpful in working to restore the integrity of her systems.  Everything he has told us has been consistent with the medical diagnostics (ex. informed me of restrictions of blood flow out of cranium prior to MRI findings).  Knowing the effectiveness thus far, we are planning a trip to receive more intensive treatment in November.
Please don't mistaken all of this for naivety or a grasping for straws.  I do realize the severity of the issue.  That is why I feel more of an urgency than ever to keep searching for the "whys".  I do feel like a 2 year old asking the "why" questions, but, each question takes me one more step back in her process and puts more pieces of the puzzle together in my mind.  I simply don't want us to be overlooking things that are seemingly unrelated.

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