Friday, February 24, 2012

The New Normal

We are almost a year into our "new normal."

Our "new normal" means that we tend to have at least four appointments a week, mostly therapy visits.

It means that Calvin often says "can we go to the doctor today?" because he knows that he gets to play Angry Birds during the visit.

It means that I am very accustomed to making copious amounts of bone broth and liver puree.

It means that David might make an off-hand remark about how Juliana might live with us for the rest of our lives.

It means that I am at the point where I can casually discuss some of Juliana's birth complications with a complete stranger.

It means that Juliana will soon be on Medicaid.

It means that we just plug along, and I no longer get quite so hung up on how much easier life would be with healthy children.

It means mountains of paperwork and many phone calls.

It means that I am close to full recovery from stress-induced PPD.

It means that we're managing and things are all right.

Juliana's birthday is right around the corner. Six months ago I didn't think that I could handle this milestone. Now I'm pretty sure that I can. Another part of this new state of normal is that I've learned not to worry so much about comparisons and milestones. What's the point? Juliana is moving along at her own pace. I feel confident that we are doing all that we can to maximize her potential.

Thursday, February 9, 2012

Feeding Tube Awareness - who needs it?

This week is "Feeding Tube Awareness" week. Honestly I have mixed feelings about "awareness." I don't have any personal goal to bring awareness to feeding tubes or to Kabuki syndrome. This sort of awareness provides only casual knowledge for those previously ignorant and I don't see that it does much good for anyone. I am far more interested in bringing awareness to healing protocols such as GAPS.

I will go out on a limb here and say that if there was more awareness of healing foods then there would be fewer kids with feeding tubes. I know this firsthand as I emphatically believe that Juliana could have avoided a g-tube had I known then what I know now. I do believe than an NG tube would have been necessary for a short time (maybe 6 weeks). But my girl could eat and she was catching on quickly when everything went downhill.

Case in point: one of my favorite GAPS bloggers recently wrote about her preemie son who had previously had a feeding tube. Even with a feeding tube he struggled to grow and he did not have any appetite (nearly universally common for tube-fed kids). Read about the changes since starting GAPS.

Juliana is going to have a similar success story. When I told her GI that I wanted to take her off of reflux medication, he gave me quite a long spiel about why I shouldn't do that. I took his advice... for another week or so. And then I followed my gut and removed the medication cold-turkey. (I now believe that nobody should take a reflux medication and that anyone and everyone can be free of acid reflux). Guess what? Juliana is the GI's only tube-fed patient who is not on a reflux medication. When he saw how she was jumping percentiles in the charts, he was surprised and asked me how I was doing that. At our last appointment he called her "juicy" and said that she was in a good position to tube wean. Although many Kabuki babies struggle with weight gain, Juliana has had little difficulty in this area. Are all of these things coincidences? No.

This is the awareness that is needed. It is needed to both the feeding tube community and to the public at large.

I will close with the wise words of my friend Nichole. She is always an inspiration. Read her story.
GAPS heals autoimmune disease. Period.  It is not a band aid. It is not a fluke. It is not a trendy diet or a prescription for a select few. It is scientifically backed, time tested, and designed for even the most difficult autoimmune diseases. And in the face of fear, it provides hope.

Tuesday, February 7, 2012

Eczema and skin woes

It seems that whenever I make a public announcement that things are better, something will slide downhill. Two steps forward, one step back. Since posting that Juliana's skin was clearing (it really looked like it was!) it has gotten much worse. In fact there was one morning a week or so ago when I literally did a double take. Not only does she have some mild eczema on her cheeks, she also has had little red bumps on her chin, around her mouth, under her eyes and on/around her nose - basically everywhere except her forehead.

So what in the world is going on? I wish I knew. I might suspect a virus like Hand, Foot & Mouth but she doesn't have these spots anywhere else and she doesn't show any signs of being sick. I might suspect a food intolerance but she doesn't have any GI symptoms. In fact overall she is doing quite well. So my hunch is that we are dealing with with either a detoxification reaction or a nutrient deficiency. I've been leaning towards the latter theory.

A few months back I read Supperimmunity for Kids by Dr. Leo Galland, a prominent immunologist. This was a surprisingly good book, though the reader may have to separate the wheat from the chaff in a few places. I also might as well mention that the book is over 20 years old, but in my experience it's still light years ahead of today's conventional medicine. Dr. Galland discusses how he has some kids whose allergies completely disappeared after taking cod liver oil (I wish we were so fortunate!) He discusses why pregnant women should not drink tap water. He says to give egg yolks and liver to your baby. He repeatedly discusses essential fatty acids (EFAs). There's some good stuff here.

I bring all of this up because Dr. Galland also discusses eczema and how it's not always related to something that a child is getting but rather something that they are missing.
Some children need more EFAs than others because their bodies don't metabolize EFAs well. Children with eczema have difficulty converting linoleic acid, the major omega-6 EFA, to GLA. Evening primrose oil and black currant oil, which contain GLA, get around this problem. Some children may also need more omega-3 EFAs; up to 1 tablespoon of flaxseed oil a day by age one may help. Or you may substitute up to 1 teaspoon of cod-liver oil or up to 2 tablespoons of walnut oil. If you are breastfeeding, add EFAs to your own diet.
Dr. Galland also says that in his research he has found that people who have allergies need more EFAs than people who don't.

Now back to Juliana: I'm working with our nutritionist to try a few different things. Some things that we are considering are Vitamin C, Zinc, and of course, EFAs. So far we've switched the form of Vitamin C and have seen a modest improvement in her skin. I have been giving her Evening Primrose Oil (an EFA) but can't say that I've seen any change from it. We're also about to switch the base of her formula and it will be interesting to see if that changes anything. It seems that even once everything in the diet is right it can take a little while for the skin to clear. We'll see, I guess. Juliana's dietary challenges are certainly an exercise in both patience and perseverance.