Sunday, July 31, 2011

Wild Goose Chase

If someone told you to turn a piece of paper with a "P" on it clockwise 30 times, would you do it if they promised it would help your child get better? Let me answer that for you - yes you would.

It seems once again we are back to reevaluating Maggie's neck. We seem to be in a pattern of going to a new doctor, following their advice for 3-4 months, only to realize whatever they told us to do is not working. And then I panic that she has some horrible condition that we have missed all along. I then find myself waking at 2 am to research on my iPhone (it's the only time I really have peace and quiet!).

To say we've been on wild goose chase to help Maggie is an understatement. Our new course of action began when we were in Little Rock earlier this month. At the pool with my sister and our children, I notice another mom approaching me with the now familiar "I'm about to give you advice about your child's neck" look on her face. I dread these moments, because they happen so frequently and I am just tired of being polite when complete strangers tell me that I "should really consider doing physical therapy with Maggie." 

This mom was different though. She went on to tell me that her son had a similar condition and when he was 11 months she saw an "orthospinologist'" while visiting her mom in Florida. And he "fixed' her son. Something about how his skull was out of alignment with his spine. I quickly dismissed her and told her we've had MRIs and CT scans and Maggie is structurally normal. But she insisted I check it out. And I did - immediately on my iPhone!

Basically an orthospinolgist is a specialized chiropractor who focuses in the neck area. I figured either this was a sign from God, or just another dead end. But either way, I had to find out.

So over the past few weeks we have been driving 45 minutes each way to the nearest reputable orthospinologist. His opinion is that in my very emergency c-section the doctor pulled her so hard and fast that her skull was pushed out of its normal position. He said he would classify it was a "traumatic injury." Never heard this reasoning before, but I have to admit, it was compelling. What was even more compelling is the first time we saw him he said with complete sincerity, "Oh yeah, I can fix her."

Most people would jump for joy at this statement. I just kind of chuckled. I've heard it all before and been disappointed so many times, but I am willing to try anything. After all, he can't hurt her. His treatment is very gentle unlike some chiropracters. And since the treatment began, we have seen her moving her neck more. No dramatic changes yet, but I want to give it at least another month or so.

In addition to the orthospinologist, we were referred to a functional neurologist by one of her therapists. I really don't even know how to explain what a functional neurologist is, so you might have to google it. But he's not a medical doctor. He takes a different approach - he looks at the whole picture of what's going on, including sensory and nutritional stuff. 

I know people reading this are probably rolling their eyes. Hey, I'll be the first to admit I am skeptical of non-medical "doctors." But we've been to just about every specialty of medicine and no one has been able to really help us so far. I know deep down that there is something else going on with Maggie that no one has figured out. And I am not going to stop until we figure out what it is.

Anyway, his opinion was very different from the orthospinologist. He thinks Maggie has a chronic condition that has nothing to do with her muscles or bones. Rather he says her head tilt is a neurological issue (which  contradicts everything we have been told so far). The interesting part of it is that he believes the brain can be manipulated to cope. Meaning we could retrain her brain to hold her head straight.

So that's where the whole turning the letter "P" clockwise comes in. He wants us to do this and a few other "exercises" to test her brain's response to certain stimuli. Yes, I have really been doing that to my child. And, yes, Justin thinks I have lost it completely!

So we are going to check back with the functional neurologist this week and see if it turns out to be anything promising. Also up this week is the ENT to talk about Maggie's hearing test, a consult with some new therapists, two visits to the orthospinologist, two PT appointments, two OT appointments, one cranial sacral appointment, a fitting at Scottish Rite for her new nighttime brace, and also a follow up with her neurosurgeon. And, yes, this is a normal week for us. One of my good friends, in trying to explain our situation to an acquaintance, described it as "Lee has more appointments in one week than most moms have in a year." Well put!

Anyways, I am preparing for the neurosurgery appointment with lots of good questions and research. But my mind keeps coming back to how I'm going to explain our recent "alternative treatments" to this world-renowned pediatric neurosurgeon...


  1. I think moms know best! Keep up the fight for Maggie and you'll never regret not doing all you can!!!

  2. WOW...I know it was encouraging to hear the ortho guy say "I can fix it" instead of looking at her from all angles with a confused face...(how you described the 20 doctors at that evening class). And the pediatric guy knows that mothers who love their kids will do anything...and he sees lots who will do anything, right? Id just tell him that you know it sounds crazy, but really want to see if anything will help... Anyway, I continue to pray for maggie persistently...God loves her and loves you all and we do too...praying the ortho guy can do it!!

  3. Praying for you....You are such a great mom..and I know you'd do anything for her! I am praying for a miracle...and hopefully these Dr's (Non Dr's ) may that! :)

  4. A good physician should readily admit they don't know at least half of everything regarding their patients! Right? (Or maybe this just makes me feel better about myself!) Still praying for you! Anna

  5. Lee- I started reading your blog when I too was placed on bedrest. Reading about all the worry and stress you experienced and seeing how strong your faith in God was, helped me stay strong for my little one. I am a first time mom to a wonderful 6mo old boy and a NICU nurse as well. I see premies, their families, and all that comes with being in a NICU everyday, however your story has really touched me. I think you are an amazing mother with an even more amazing faith in God! While I know you have your good days along with the bad days, I have faith that God will help you and your family! Maggie and Mary are very lucky girls to have you as a mom and your husband is very blessed as well! Your family has been in my prayers and will continue to be!