Dancing in Cornmeal

Life With Autism

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Lauren's DAN! Journal



September 28, 2002 

After the July 23rd meeting with Dr. N., we received the typical information packet with invoice and helpful information. However, the last page in this packet was a list of all the supplements the doctor wanted Lauren to begin taking (including those she was already on) as a result of the information from her ION Profile. I was overwhelmed. From our meeting, I had no idea that there would be this many more supplements to figure out how to get into Lauren, and work into our lives. There was also the cost. Dr. N?s list provided the exact names of the supplements he wanted us to buy from specific retailers, as the purity and components of a supplement can differ between manufacturers. For some, he also recommended least expensive retailers. I sat down and figured out how much each supplement would cost per day. (This wasn?t an easy task, as some were liquids measured in ounces, and some in grams, while all were prescribed in teaspoons. Some were capsules, but multiple capsules were to be taken per day.) My final table of supplements and their cost revealed that putting Lauren on this regimen would cost us $750.00 per month. Now, Craig and I would love a Jaguar, but we don?t have one for many reasons, one of which is that we don?t have an extra $750.00 per month! Of course, Lauren was already on 6 supplements, so we knew neither our health insurance nor our flexible benefits medical spending account (of our own money!) will pay for these supplements because they are not yet recognized as treatment for autism, or any of Lauren?s diagnosed conditions, such as constipation and GI pain.

In August, I set up another phone meeting with Dr. N. to speak about the cost of this protocol. He was in disbelief upon hearing the cost. He said that when he prescribes these supplements he figures it will cost the family $200 to $300 per month, knowing that the benefit was worth the price. He assumed the cost of Lauren?s regimen would be in that price range, but added that Lauren was the most extreme patient he had ever had. (He added that serving Lauren had even necessitated his developing new charts?which will benefit all his clients.) We spoke for about a half hour. The first few minutes of the conversation, the doctor thought that I was protesting the work of giving Lauren these supplements. I kept explaining that we would do anything for her, but that the money factor was a very real concern. (Because, even if we completely heal Lauren the first month, the family is still going to need to eat!) Finally, Dr. N. seemed to understand that I wasn?t a wimp of a mother, but that I was just seeking help in prioritizing which supplements to buy and figuring out the most financially reasonable way to give Lauren the most possible. He went through the list of supplements with me and told me which ones I could reduce the daily dose and Lauren would still receive benefit. (We can always increase dosage later.) I also pointed out supplements Lauren was already taking, and the doctor agreed that her current multi-vitamin would suffice in place of 2 supplements he recommended. By the end of the phone call, we had worked the number of supplements down to 17, and the monthly cost down to $530.00. We still would have to walk out on faith when placing that first order, but we were appreciative of the "savings."

(For the irony of it, I?ll just add that, within the next few days, we received a bill of $100.00 for this phone discussion. I know doctors have to charge for their time, but considering the reason for the phone call, I still thought it was funny.)

Throughout August and September, we added new supplements to Lauren?s daily regimen. Each week, I changed Lauren?s daily check-off schedule to include the newly added supplements. Even when we weren?t adding a supplement, I was still recreating her check-off schedule weekly, as we were always coming up with what we hoped would be a better "order of administering" the various supplements. In early September, I finally placed a large order that included all of the final missing supplements, and she was taking every one that was on the recommended list. These