Tuesday, June 26, 2012

In.... and Out

June 22, 2011 - Juliana had a PEG tube placed.

June 22, 2012 - Juliana had her g-tube removed.

I didn't realize the significance of the dates until afterwards. I was instantly overwhelmed by a flood of memories: remembering all of the very difficult decisions I've had to make, remembering the constant worry, remembering the feeling that my life had changed and that it was not for the better. And now? Now it is hard to believe that things were once so hard.

Saturday, June 23, 2012

Signs of healing

The past few months have seen two major signs of healing: eczema and constipation are now things of the past. These were both problems that have plagued me for the better part of a year.

Juliana's eczema appeared shortly after we began feeding her liver-based formula. At first I thought it was detoxification from moving to a better diet. The body has mechanisms for expelling the bad junk and some people do experience skin issues while they detox. Did you know that the skin is the body's largest elimination organ? It is sometimes called the third kidney because of the way that it helps the body eliminate waste. But Juliana's skin wasn't improving; she continued to have a very red and splotchy complexion even after months on the new diet.Then I thought it was maybe a nutrient deficiency. But the different things I tried didn't have any effect. Eczema originates from a leaky gut, and I already knew that she had that, but why were things getting worse when I was doing everything right?

In late March she had surgery for various ENT concerns. On the day leading up to the surgery her skin looked horrible, so bad that I wondered if they might cancel the surgery just based on her skin. (Likely I'm just paranoid - you see how paranoid you are when your kid has surgery!) Of course they didn't cancel the surgery; they actually didn't say a word about her skin. The night before I had given her an epsom salt bath and it actually looked a little bit improved.

And that was the solution: epsom salt baths. These baths are important because they help the body expel toxicities.
Anything toxic we eat, breathe, touch or put on our skin absorbs very quickly and puts another workload on our detoxification system. In a GAPS person his or her gut is the major source of the toxicity overloading the detox system with too much work. [1]
Our bodies must eliminate large amounts of waste products from our systems daily or we will die.  The bowel, lungs, kidneys and skin are our four channels of elimination.  [2] 
Juliana's detoxification is sluggish and confused. It needs all the help it can get. We've been doing the baths regularly for close to a year but I had let bath time slide when life became too busy. Honestly, I thought the idea of a detox bath seemed a little bogus. I was so wrong! I decided to commit to regular baths despite the circumstances. And it has worked. Eczema is a thing of the past; we haven't dealt with it since the surgery. She still sometimes has lightly flushed skin. Right now I am contributing it to the heat of summer and it may also be a result of increasing fermented foods in her diet. 

The next sign of healing is much more recent. Juliana had chronic diarrhea for the first few months of her life that eventually turned into chronic constipation. This was despite eating a very clean, very digestible diet that includes probiotics and fermented foods.
Constipation is always a sign of deficient gut flora in children and in adults. The beneficial bacteria that normally populate the bowel play a crucial role in proper stool formation and elimination... a healthy person should have 1-2 stools a day. [1]
A few months ago I began to implement the constipation protocol that is in the GAPS book. This meant daily juicing (carrots), epsom salt baths (check!) and enemas. Daily enemas. The idea behind this is that you can't let the toxic poop stay in the body for too long. It needs to be expelled or the problem will compound. This obviously results in more constipation but it can also cause a number of other problem ranging from eczema to learning disabilities. That last bit might sound crazy, but remember that what happens in the gut has an effect on the brain. Letting poop sit in your body for a long time simply isn't healthy. By this point I am sure that I have performed more enemas than most medical professionals. Enemas unfairly get a bad rap; they are completely safe and very effective. I was concerned that Juliana might come to rely on them but that has never happened.

Despite all those enemas we still weren't seeing long-term improvement until I discovered the recommendation to eliminate winter squash. (For more details, see the FAQS, Constipation section, #6). Butternut squash has been Juliana's main vegetable for quite some time! I began cutting back on the amount of squash and instantly the constipation showed signs of improvement. After eliminating the squash completely, the constipation issue is gone. Just like that. I want to note that it's not just the removal of squash that has improved her stools; squash was simply the last piece to our puzzle.

Eczema and constipation are sadly both rather common problems for young kids. Both problems originate from a leaky gut. Both problems can be treated completely naturally. (Though your solution might very well not be exactly like ours). I've had drugs pushed at me for both of these issues and I've resisted. Other than a little bit of coconut oil I have never used anything on Juliana's skin. I have also never used any sort of laxative or stool softener. There were times when I wondered if I was crazy and I seriously entertained the idea of going outside the GAPS protocol, but I have always come back around to the belief that I need to stay the course. After strict adherence to the protocol the results are certainly sweet!

[1] Gut and Psychology Syndrome
[2] The Skin – Our Largest Organ of Elimination

Friday, June 15, 2012

Broth Balls a.k.a.Meat Jello

Broth balls: my new creation deserving of its own special name. Although composed entirely of meat, they are pretty different from the meatballs that I normally make:

Juliana still eats mostly pureed food. She needs to practice her feeding skills but she has a very nervous mommy. These broth balls are really perfect for a baby learning to chew. They will slowly dissolve to mush in the mouth. Basically they are like the real food version of Gerber dissolving cereal puffs.

The secret to broth balls is getting the right amount of liquid in with your meat. I boil a pound of frozen meat in two cups of water. By the time the meat is cooked there is about a cup and a half of water leftover (but now it's meat stock - don't throw it out!). I puree all of this in the Vitamix. Let it chill in the refrigerator, and voila! You may find that you need to adjust the amount of water based on fresh vs. frozen meat. Your finished mixture should be quite liquidy before going into the refrigerator. If it doesn't gel after refrigeration you can add in some gelatin.

Note that these must be served cold or at room temperature. If they are heated they will melt and turn to mush.

Friday, June 1, 2012

Sensory Integration

This story begins with the developmental pediatrician, a doctor that I didn't know if I should bother with. After you've seen a dozen doctors, most of whom are not really helpful at all, you really have to question whether or not to add another doctor to the list! Despite that, I decided to pursue it. There were a couple of people on the Kabuki group who said that a developmental pediatrician was their most important ally and that was enough for me to give it a try.

I wasn't sure what to expect from the appointment. I went over a brief history and after that the doctor spent about thirty minutes just observing Juliana. Several times he asked what we were doing in OT and several times I told him. Finally he told me that we needed to do much more sensory work because he thought that Juliana was having some issues with sensory integration. This really made sense to me in retrospect; there are a number of little sensory-seeking or avoidance behaviors that Juliana has. To anyone not familiar with sensory issues these behaviors would just look like little quirks. For Juliana these sensory issues have manifested themselves in a variety of ways: oral aversion turned into rabid oral seeking, not being able to sit still, often being discontent even when being held, crying when things got a little bumpy (such as when riding in the car), practically falling over because she was so overwhelmed when David walked into the room, almost always clasping her hands together, not being able to separate from me *at all.*

The doctor set us up with 'the best' OT who specializes in sensory integration. He warned me that it wouldn't be cheap and that I should consider it an investment. I told him that was fine, I was interested in the best,  please give me the best. (There seems to be a running rule that the best therapists don't file insurance, are out-of-network, and they certainly don't accept Medicaid).

It's now been about six weeks since we began seeing the new OT. I was very quickly hooked! During our first visit she spent two hours with us and during most of this time she explained the senses. There are actually two senses beyond the five senses that everyone knows about (and neither of these is seeing dead people - ha, ha). These two senses are Proprioception and Vestibular:
Proprioception refers to the way your body communicates with your joints, tendons, and muscles. When your proprioception system is working properly you know when you have bent down, when you stretch your arms, and basically where you are in the space around you and internally. You know all this without having to look so you can close your eyes and bend your arm and know where it is. This is what the police officer is checking for when he asks you to put your finger on your nose. If your drunk, you can’t do that very well—the alcohol alters your sense of proprioception.
Vestibular is the last of the senses that many people are not familiar with but experience every single day. The vestibular sense refers to a person’s sense of balance and movement. It has a lot to do with your ear—so if you have an ear infection you become acutely aware of your vestibular system. We are all born with an innate knowledge of gravity because of our ears. Certain parts of the human ear tell the brain that a person is standing upright, upside down, or on his or her side. 
Having the sensory system up and running correctly is really vital for obtaining new skills. Just imagine how difficult it would be to learn how to crawl if you weren't aware of your limbs.

You can read more about the senses here.

Our new therapist is not only very knowledgeable but is also very passionate about what she is doing. (And I don't know how she does it - I feel tired just thinking about what she does all day long!) So far she has taken good care of us. When we first began these new therapy sessions I had a short list of areas were I would like to see improvement: I'd like to see Juliana tolerate her PT sessions, I would love it if Juliana had less anxiety when I leave the room, I would like to figure out how to meet her sensory needs so that she does not feel so compelled to try to mouth everything in sight, especially things like grass or leaves. Since we've begun OT there have been improvements in all of these areas and then some. 

We actually received an amazing report from the OT this past week. Each week so far she has been excited by the improvements that she has seen. This past week she said that Juliana's social, emotional and cognitive skills are mostly at an age-appropriate level. Yes, her motor skills are really lagging. But the OT really emphasized that we are still in such a good place!

All of this OT fits in very nicely with the therapy that we're already doing at home. My hope is that by the end of the year I will be able to handle most of Juliana's therapy on my own. That's what I am gearing up for now. I am creating our own therapy room and I am devouring resources. I am trying to observe sessions as best as I can so that I can learn some of the tricks of the trade. 

Does sensory integration sound like something that your child struggles with? There are a number of excellent books on the topic. You may or may not find a developmental pediatrician helpful. You almost certainly would benefit from an OT who really knows sensory processing; but a really good therapist can be hard to find and, at least in my experience, has a high price tag. It's my belief that a neurodevelopmental program will also help tremendously (and it is far cheaper in the long run!). If your child is young a good place to being is with the (poorly titled) book How Smart Is Your Baby? If your child is older, look for a neurodevelopmentalist in your area and also check out NACD and IAHP. Last but not least you almost certainly need dietary intervention

We've done all of the above - and we're seeing results!