Wednesday, November 28, 2012

GAPS Kids (and babies, too)

You will come to a place where the streets are not marked.
Some windows are lighted. But mostly they're darked.
A place you could sprain both your elbow and chin!
Do you dare to stay out? Do you dare to go in?
How much can you lose? How much can you win?

A year and a half ago I had a remarkable answer to the prayer in the form of a private message on a rather obscure message board for feeding issues. One message led to another and soon I found myself so blessed to have become friends with an amazing mother. Check out her guest post today over at GNOWFGLINS. 

It can be difficult to make a radical overhaul in diet. It is more difficult when you are doing this with a young child. It is much scarier to do with an infant who has had frighteningly severe reactions. Some are not interested in making this leap at all, perhaps because they hold no regard for the importance of diet or perhaps because they hold too much regard for modern medicine (which in turn places almost no emphasis on diet). I was ready to make the leap instantly when I read Ellie's story. But there was a slight problem. Juliana was only a few months old. Was this really safe for her? How could I proceed with an infant? At the time I couldn't find anyone who had put an infant on GAPS.  It was scary. What if I made things worse? What if I caused damage? I had some guidance here and there but mostly I was on my own. I didn't feel like I had any other choice, not when we did not have a single food that was safe, not when the GI doctor had told me "I don't have a clue why she has so many GI issues." How much could I lose? How much could I win?

Now we're seeing stories similar to mine in droves on GAPS Kids. I am honored to be a part of this group of people (mostly mothers) who are fighting for their kids. We're learning together, commiserating with each other, and we're healing our kids. If your roads are not marked, please dare to come in one of the few places where the windows are lighted.

Sunday, November 25, 2012

Parent Power

Never underestimate the power of parental love. This is especially important if your child has special needs. It is your love and your desire to have the best for your child that motivates you to seek the opportunities that will provide him or her with the highest possible quality of life. I see this with all the parents I meet. Their willingness to take a stand for new possibilities for their child as they seek to unlock their child’s hidden capabilities takes courage and is inspiring. There’s power in this determination and love teaming up with science and skill. It expands the child’s opportunities beyond the limits of clinical diagnoses, commonsense reasoning, and past experience. It is often the first step on the pathway to the miraculous.

Investing in the Future

One thing I did not anticipate about having a child with different needs? The cost. Expensive doctors, expensive therapists, expensive suggestions, cross-your-fingers-that-insurance-will-cover-this cost. On top of that, we’ve been on COBRA for the past eighteen months. COBRA = sky-high premiums. I don't like to dwell on negativity but I do have to be real: it's expensive. I don't get too hung up on that fact; I am happy that we have been able to keep our heads above water (though sometimes just barely). I try to view all of the money spent as an investment in Juliana's future.

At the beginning of this journey it was very difficult for me to determine how we should proceed with the onslaught of options. Over time we’ve moved from a state of desperation to a place where we can more carefully evaluate our choices. I am truly grateful that we live in a big city with so many options for treatment. I am truly grateful that we had savings that enabled us to pursue some of these options.

How we’ve invested:

Good health insurance. We were really fortunate to be on a good health insurance plan when Juliana was born. Because of all of her medical needs in her first year of life, we had to keep this good coverage and forego the cheaper coverage that was otherwise available to us. The premiums alone were something like four times what I paid when I was an employee and they exceeded the cost of our monthly mortgage payment. But we were really grateful to have excellent coverage and the silver lining was that our deductible was fairly small and therapies were mostly covered. We paid out mega bucks for this policy but it was the right decision. It was really the only option. (Medicaid began helping out with this cost earlier this year.)

Therapy. Many insurance policies have very subpar therapy benefits. One reason that we stuck with our COBRA coverage was the unlimited therapy coverage. Compare this to the other coverage that was available to us at the time, coverage of only 20 visits per year. We blow through 20 visits in two months. So, great! We have had insurance coverage for this. But just to make matters a little more complicated, we chose to stick with out-of-network therapists who don’t file insurance on our behalf. So now we have to cough up cash up front, deal with the paperwork and sometimes fight the insurance company to get our reimbursement. It is a 70% reimbursement which is pretty good when compared to other policies (maybe as good as it gets?). Assuming that everything is reimbursed (I am currently arguing with the insurance company) we pay $300-$400 a month for therapy. However we are about to begin new insurance coverage with a new employer and we don't know yet to what extent the policy will cover these expenses. From time to time I think about cutting back on these therapies, but we have seen too many benefits to consider that thought for too long. (Medicaid does not help with our out-of-network therapists at all, it does pick up the speech therapy bill however).

Diet. Last but not least! Diet is the cornerstone of Juliana’s success. If you’re in pain, you can’t learn much at all. Her diet is certainly more expensive than that of the average kid but it’s not astronomical. It’s hard to calculate what it costs since I usually buy things like meat and supplements in bulk. Even though our whole family now follows a GAPS/paleo diet (with the exception of David, who is a partial participant) our food bill overall has not increased too terribly much. I attribute this to the fact that we now eat out infrequently and almost all treat/junk foods are completely eliminated from our diet.

We’ve chosen not to invest further in:

Chiropractic. I know that chiropractic has worked for so many of my friends, so it is with great dissapointment that I must announce that it has done nothing for Juliana. I saw two highly-recommended chiropractors. The second one actually came highly recommended from several people, including another chiropractor. He is on the faculty at the local chiropractic college and he’s in their textbooks and yada yada yada, he should have been good. I liked him personally, especially in that he was skeptical of some natural treatments that are a little “out there.” He seemed credible and he wanted to help and he even had some fairly decent therapy ideas. But he really did not do anything for her, unfortunately. At the time she had pretty serious torticollis so it was fairly obvious to me that treatments were not doing much. We also tried craniosacral therapy with this same chiropractor and again, I was not impressed. Still I may consider chiropractic again in the future, and I have in fact been thinking about it as Juliana still has some side preference issues.

Homeopathy. Again, it has worked for so many of my friends. I remain pro-homeopathy but I did stop working with the homeopath that we were seeing because I wasn’t seeing any results. (And I make it my job to study Juliana.) I have used other homeopathic remedies on her and on myself. This is something that I would consider again, if I knew a really good practitioner.

Osteopathy. A cousin to chiropractic, I was excited about this one. Osteopaths can function like a medical doctor. This one did not. He was a somewhat-local person and renowned among those-who-know-things. We went a handful of times and, as with the chiropractor, I saw no benefit. I don’t think I would consider this again, unless he wanted to come to my house and work on her for free.

Naturopathy. I actually have never seen a naturopath for Juliana but I have seen one for myself. I was less than impressed with her and with most stories that I hear about naturopaths. I am sure that there are exceptions, but I have spent time researching the naturopaths local to me and I’ve decided that I am better off not spending my time and money on them.

Early intervention. I am not a fan of early intervention because I don’t get to pick my therapist. I don’t want to spend time on run-of-the-mill therapists who do things like teach Juliana how to stack blocks. I can do that myself, no clinical experience needed. We do continue to use our early intervention coordinator to help with paperwork and he advises me of various opportunities, such as his recent advice to visit Lekotek, a toy lending library (which is another small investment in and of itself, actually.)

Neurodevelopmental program. This is something that I was very enthusiastic about - and I still am. Ultimately though I have decided that at this time we will not participate in a formal program. It is very time-intensive and when we tried it awhile ago it simply was too demanding for me. It was also an additional cost. I try to do my own thing, incorporating ideas from all the therapists as well as from some very savvy moms.

I am still interested in:

Anat Baniel. I first read about this technique here and I have remained intrigued as I follow updates in the blogosphere. Unfortunately I am not aware of a practitioner local to me. I follow ABM stories with interest, but this remains pretty much out of the question for us.

Palate expander. Juliana has a high, narrow palate. This is a common feature of Kabuki syndrome and it is also common in a number of other disorders. Dr. Weston Price actually used a palate expander on a young man with Down syndrome and afterwards the young man grew taller and had a measurable increase in IQ. Read more about it here. This is something that I will do for Juliana. I am not sure when and I am not sure where, but we will do this.

Developmental optometrist. Juliana has strabismus; her eyes cross. They are not continually crossed, one eye will cross, then they’ll be straight, then the other eye will cross, etc. Her opthamologist has me patching alternate eyes for an hour daily. I am really not convinced that this is enough. Her OT believes that the strabismus is partially sensory and that various sensory input can help reorganize the brain and straighten the eyes out. Maybe so, but this hasn’t been enough, either. A developmental optometrist assesses the function of the eyes and then comes up with various therapeutic exercises to improve the coordination between the eyes and the brain and to get the eyes working as they should. I hope to begin this soon, depending on cost and insurance coverage or lack thereof.

As the years go on I am sure other ideas will pop up here and there. Thanks to the internet I am fortunate to be privy to so many people’s journeys and I love discovering what is working for someone with similar issues. But for the most part I am nearing the end of the road as far as treatment options go and I am ok with that. I absolutely believe that all the things we do benefit Juliana, but I don’t have any reason to believe that there is something else out there that could do even more for her. 
I feel like I have become a fairly good judge of what are the best treatment options for Juliana, given our time and budget constraints. At the end of the day, she has a loving family who accepts her and who wants to help her be the best that she can be. What more is there than that, really? Couple that with the help that she is getting from our wonderful therapists and I think that she has the foundation for success.