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...

Stream of my thoughts..

Maggie is now losing weight. I could not contain my disbelief at the ENT's office the other day when we weighed her. I thought something was wrong with the scale. Surely not, I said. We've been on this strict schedule and she hasn't been vomiting but once a day, and the dietitian assured us she is getting the proper amount of calories every day.  It just doesn't make sense. Is there another issue going on that we haven't discovered?

I look back at pictures from the wonderful month of April when the e-stim was working and her legs actually looked a little chubby. How could I notice that her face is now almost gaunt and her legs are so thin? I want to scream for somebody to help her. I left several messages for the doctor, nurse and dietitian three days ago - do they not see the urgency in this situation? She is tired more than usual and really fussy. She grabs her stomach in pain - but she cannot tell us what is wrong.

Lord, help us. Show me what to do. Should I start making her own formula? The doctor and dietitian say no, but I've heard so many stories of success with vomiting and failure to thrive babies from moms who have done it. At one point do I stop listening to the doctors and try something on my own?

Is it the right thing to go to another city? Is it going to be a big waste of time and money and only leave us more frustrated -as happens to many times - because "renowned" doctors don't want to commit to these strange cases where success might not be in the future. I am sending her records off to the two of the best GI clinics in the country. Lord, if it is your will, lead us to the right doctor who can help Maggie.

I just cannot believe we are back to the this issue, when we should be dealing with her neck issue? But I know that really she make progress anywhere else until she starts gaining weight and her strength back. But, really, what is the deal her neck? Is it ever going to get better?? Every time I look at her I just feel anger and frustration. Not at her, but at myself.

And hearing loss? I just could not believe it when the audiologist told me that the other day at her hearing test. Please, Lord, let it be from fluid in her ears so hopefully it will get better. But how come no one told me she was at risk for hearing loss being on oxygen and antibiotics so long?

Lord, help this child. Heal her. Bless her. Show us your plan for her life. Give me joy like Maggie has joy- and rid me of all bitterness - as I continue on this journey. 

My new checklist...

So we got our new e-stim machine and have been using it twice  a day for 10 days now. And strangely, Maggie has not had the same exciting head-straightening reaction as before. All of us have been stumped. (And when I say "all of us," I mean her nurses, her new OT, her old OT, her PT, Justin, and myself ).

Was is that we had stopped doing the e-stim for so long?? No, that couldn't be it, I told myself. The very first time we did e-stim (see the video on this blog) she had an amazing response. And we had never done it before that.

Was it that we were using the machine incorrectly? No, that wasn't it. We checked our machine, called the company, called her old OT (Ashley) and sent her videos to makes sure, and, yes, we were placing the eletrodes just right.

Another mystery with Maggie. What else is new, right?

But today Ashley (her old OT) called me from Philadelphia and hit me hard with a revelation. Perhaps Maggie is not holding her head up as much because she is weak. She hasn't gained weight in three months due to her severe vomiting. And she is burning many more calories with her now speedy crawling and cruising. Maybe her body is just conserving energy and it's a lot harder for her to hold her neck up? It made total sense to me and I believe it could be a real possibility.

So the bottom line is: Maggie has to gain weight and soon. And we have got to figure out what to do when the Botox wears off. We are seriously considering going to another city for a GI opinion because really there is no one else in Dallas who can help us.

But back to the weight gain. Even though I am a Type-A, organized person, I have rededicated myself to making sure Maggie is on a strict feeding schedule. When we first started having nurses at our house I assumed that typing out Maggie' basic schedule was sufficient. But it was really hard for the nurses to remember to do everything they were supposed to do each day. I guess when it's not your baby, it's hard to remember everything. (Or maybe Maggie is just a very demanding patient!) 

Anyway, I was very lenient about things. For example, if Maggie was supposed to eat at 3, but the nurse didn't get to it until 4, I just nicely shrugged it off and said that we would just push back her 6 o'clock feeding to 7 o'clock. But that would push us back the rest of the night so we ended up trying to feed her more than she could take and she would vomit, thus losing vital calories she needed. Of course, I am mad at myself for not being more strict about it but the only thing I can do is change moving forward, right?

So last week I created a new checklist for the nurses and myself to go by each day. It includes her feedings, but also checklists for stretching, e-stim, joint compressions, and brushing (no, not hair brushing - it's a brush that goes all over her skin to help with her sensory stuff).

We keep this in the front of Maggie's "binder" (which we use throughout the day to log all of her meds) so we can all be accountable to do what needs to be done each day.  Let's face it, it is very easy to "forget" to do the stretching. I mean it's absolutely awful to do. I hate doing it. But it needs to be done. Same with the e-stim. It's hard to fit in thirty minutes of making Maggie be still when she already has to be still five times a day for thirty minutes while she is being fed. But we need to do it.

So here is the checklist for our little, but exhausting, patient:

Oh I hope she starts gaining again soon!!!