Saturday, January 19, 2008


So. About Q.

At the last neuro visit in early December, I mentioned that I'd been thinking about giving Q Ambrotose, from Mannatech. I explained what it is as I understand it: "essential sugars" which give a little assist to the neurons in their efforts. Much as glucose is important to fueling the brain, these sugars, no longer readily available in our depleted diets, should facilitate neuronal activity. Or so the theory goes. I mentioned that a neurologist friend is impressed with the science behind it, though she herself says that no research has been done.

The neuro doc said then that, "I'd like to say that if it's worthwhile I've heard of it, but that's not always the case. I mean, somebody had to persevere with neurodevelopmental therapy when we didn't know why it worked, just that some kids were seeing gains, or it would never have become an accepted, clearly beneficial therapy. There are many things to consider in these kinds of situations. The main drawback I can see to all this would be that sometimes excess sugars can cause loose stool or diarrhea which in Q's case is unlikely and wouldn't necessarily be a bad thing." (Dontcha love this guy?)

So as I was leaving the office, I was thinking about this. I read somewhere that fully half of our neurons are in our intestines. Thus the "second brain," "gut feeling," etc. Q suffers from Polymicrogyria, a neuronal migration disorder. The first indication of there being anything "wrong" (other than my gut feeling -- ironic, no?), was when the ultrasound tech saw "abdominal ascites" at 20 weeks. A brief review: remember in high-school chem when you mixed two clear liquids together and they created precipitate? Snowflake like things floating in your previously clear liquid? The "calcifications" which on ultrasound indicate abdominal ascites are sort of like that. They indicate that something is where it's not supposed to be or something is out of order in development. In this case, the pediatric surgeon thought it likely that as Q's liver was forming, the bile duct leaked. Less likely would have been leaky intestines. Just in case, Q was 48 hours npo in NICU, while they ran a series of contrast x-rays on his belly. (He had a dextrose IV -- the thought of not nursing my newborn still makes my stomach clench. The girls were at the breast within minutes, though G had a little time with NICU people -- looking for aspirated meconium. Ah, the memories...)

So Q has issues with his neurons. The waves of neuronal migration which happen in a typically developing brain were somehow interrupted in his. One might logically assume that the same happened in his belly. Hmmm. Do the two regions of neurons each migrate? Do they follow the same general pattern? Might people with IBS, etc. also have neuronal migration issues?

I'd thought about Ambrotose for a long while, but it's expensive. A friend passed on part of a container she had left over from a relative's generosity and Q started having it in his yogurt early in the same week we left. He's had it every day since.

So we went off and had our trip. The plane ride down was good, even with nearly 2 1/2 hours on the plane at the gate, waiting for a signature on a maintenance record. (I heard a mechanic on the phone as we were boarding and thought to myself, "Uh-oh." Yeah.) Q and his sibs charmed the socks off everyone within smiling distance, even with the fussy teething issues. The flight attendants brought me several little cups of half and half so I could stir it up with his Gerber DHA-added oatmeal and make him all happy -- starch and fat, who wouldn't be? He fell asleep as we were taking off and slept nearly the whole flight. The bigger kids were fabulous helps getting things on and off and the airline didn't ruin his chair. Woohoo.

When we arrived at what was to be our homebase for the next 16 days, Q was anxious to get down on the cushy carpet. I lowered him, with support. He put out his hands in an all-fours position and promptly tried to crawl. Crawl. He finally got so excited with his efforts that he shot forward onto his face and didn't even care. He was just anxious to get back up on hands and knees and go again. So we worked at it a very little bit. Being all cantilevered is a tough position for me to hold and still keep him in good form with hands angled correctly, fingers out, arms and legs alternating.

The first couple of days he was eating less than a third of his usual. It was so bad that I thought I'd have to haul him down the road to the nearby (hallelujah) Children's Hospital and have someone install a G tube on the spot. By the third day, he was almost back to normal (good thing, since this was my intervention deadline day in my head), and following that he really took off again. So I threw in lots of organic cream, full fat coconut milk, some cottage cheese and Yo Baby and he seemed to be a smidge more energetic.

He quickly acclimated to the new people (he recognizes the "mommy tone") and made friends with everyone who crossed his path. Time passed quickly. He chortled and cheered when his sibs showed up for his birthday party and again when they were all around him, holding him at the airport. He'd spoken with the kids on the phone several times while they were away, always looking for them when the conversation was done, always happy and giggling to hear their voices.

When we got home again, he had the same response to the grandparents at the airport. Was happy to be home. Cheerfully went with grandma and grandpa to play while mommy assumed the fetal position under every available blanket in the house. By the following day, he was ready for mommy snuggle time again, but has such a great affinity for the rest of his family that he'd had no complaints until then. (I am so glad. I don't know what I would have done if he'd wanted to play clingy little baby monkey while I was shivering and unable to stay awake.)

So the week moved on and he went to therapies. Here's what he's doing:
He's making faces, using his lips, babbling in those front of the mouth sounds.
He clearly wants to crawl.
He's walking more. Supported, sometimes stepping on his own toes, but alternating his feet most of the time and he seems to be pretty clear that he wants to go, to get somewhere and he'll be needing us all out of his way, thankyouverymuch.
He fed himself those little Gerber cherry bites star-shaped thingies the other night. (I know!!) I put the first couple in his mouth and then the rest between his thumbs and forefingers and he just went right to his mouth! And he chewed them! And he moved pieces around in his mouth so he could finish chewing them before swallowing!
In speech therapy on Tuesday, he had a little help to use a sort of spork-like thing and put dabs of food into his own mouth. After the first couple of helped attempts, he'd wait for the utensil to be twirled in the food and "loaded up" and then, zoom, right to the open mouth. Aaaaa!! (See me dancing and shrieking like I've just won a million bucks?)
In OT, I told his therapist what we'd been doing and showed her the motions he'd been making that led to an almost crawl, which was definitely him creeping toward a goal. She was working with him and described his tone as much better. I said, "It's almost like he's a different kid." Her reply: "It's not almost, he is a different kid." She showed me how to use a twin flat sheet to help him get up, supported, into the hands and knees and rocking positions and use the sheet to then help him switch from side to side for practice sitting up. He loved it. I did it at home with his weight-bearing mitts on and he had some fun acting like he'd just be off and running. When he figured out that he could push hard and get his feet under him to really go, he didn't want to be on the floor anymore and so we just walked around the living room with the sheet supporting him.
In PT, we spent most of the session getting his chair adjusted -- he's grown and the chair wasn't so useful the way it was. Hard to get him in and out without bopping his head, uncomfortable in the femur length/ischial area ("sit" bones). We'll have more adjustments next week, but it's already much better. The rest of the time he was flipping around on the big ol' orange therapy ball and loving it. He kept getting into tougher than normal positions and checking back over his shoulder (not arching but turning!) to see if the therapist was noticing how cool this was. Big grins throughout.
He's making jokes with everyone who will play with him with their faces. He takes grandpa's glasses off and thinks it hilarious. (Those giggles are infectious.) He put his arm up to hide my face the other day when I was trying to get him to raise his chin and play Peek-a-boo. I'd been saying, "Where's Q?" When he nailed me with his forearm and a huge sidelong grin. I asked him if he was hiding mommy. The grin got bigger. So I said, "Where's mommy?" He dropped his arm and giggled. I said, "Boo." More giggles and the arm comes back up. We repeat this four times, then he wiggles around to do it in a different position. Aaaaaa!! We've done lots of peek-a-boo, but this thing of him initiating play is new. Love it!
He was lying on the bed, playing with his face when suddenly his fingers are splayed on his cheek, close under his eye. "EYE," he says. Aaaaaa!!!!! He's done this before when asked, when primed with: here's your nose, here's your mouth, can you say eye? But not on his own, spontaneously.
His head control is much better. His trunk is far more erect when he's upright.
As long as he's properly hydrated, his Miralax use is minimal.
He is harder and harder to entertain, just like a two year-old would be when perched on a lap in church -- immobile is hard at this age, apparently even for Q. He'd rather be getting into stuff, even if he needs some help creating the messes. "Like a two year-old," as his speech therapist observed when watching him go after his mouth and food with his hands while feeding.
He's eating the small curd cottage cheese instead of not being quite sure what to do with those unmelted chunks, no longer looking around like: Mom, didn't you check this for texture before you gave it to me?

All this since the Ambrotose started. I'm not ready to declare it a miracle, or even to say it 's all the supplement. But, shoot. When my lovely friend put two jars in a gift bag for me on our trip, I nearly cried.

I'm sure I'll think of more as soon as I hit publish. I'm off to pick up a refill of Q's Trileptal -- for some reason the last bottle had only 180 ml in it instead of the 210 ml we need to get through a month, so he's out.

This is cool stuff, no?

There's still all this to deal with, but the boy is curious, has a certain spark which makes him a favorite of his therapists (and everyone else who comes into his space), and just seems to be going places. Much like his sibs. More about them later.

Hugs and kisses.


Kai said...


What a marvelous thing!!!

BBA said...

GO Q!! C that is so great!!

Zoo Keeper said...

Oh! Oh! (Jumping up and down and rejoicing in VA!!)

God is good.

Thank you so much for posting the update... I can't wait to read it to the guys in the morning.

Alphabet Pam said...

Crying sloppy, snotty tears here. I touch that little head in the picture every day and send healing thoughts and energy and love your way.

What joy to hear this good, good news. *sniff* *SNURF!*


Carolyn said...

What wonderful news!

Melanie said...

That is so awesome. Perhaps you can send me more information of this Ambrotose. I have never heard of it. BUt because Daniel and Q have pretty much the same diagnosis......maybe it'll help Daniel too. We also use fish oil..and I can't swear by it, but I will tell you when Daniel has it he is more alert and babbles a TON more. Could you email me direct about the Ambrotose.

~ V ~ said...

I'm doing the happy dance! Wonderful news!

sleepy jeanne said...


And not just any old wow, one of those sniff-sniff-tears-in-my-eyes-Wow!

Anonymous said...

Hurray! This is great and wonderful news.

God is good...that is all I can think.

ChristyB in AL

Anonymous said...

Wow. Just. Wow. That is incredible, outrageous, and all of the other wow words I can think of! How can we make sure you have an unlimited supply of this stuff? Is there a supplier where we can buy gift certificates or something?