
I enjoyed a good sermon in church this morning, some of which included words from Job, reminding us all that no matter where we are in our trials, God’s answer to Job started thusly, “Where were you when I laid the foundation of the earth? Tell me, if you have understanding.” (38:4)
Since I hadn’t been to church in a few weeks, I need to hear this message today. It was a good reminder to me that it’s time my pity party came to an end and that I start to look up and be thankful for my trials, in which are many opportunities to live as the person by whose Name I claim my true identity. I hadn’t been to church in part due to increased activity at home (daughter’s therapies and increased doctors’ visits) and in part due to my own unbelief.
Likewise, I thought that if I heard one word from the pulpit relating to “Christian, you need to be more…. this or that,” that I’d just melt. My nerves and feelings have been so close to the surface lately, but I knew that in part that was due to my own lack of faith and not staying in the Word. So it was good to be back in the courts of the Lord.
There’s a lot going on these days on the home front, and I’ll try to provide as brief an update as possible (for me, that is).
By God’s grace, my daughter and I returned safely from a trip to Tampa last week to receive the counsel of a DAN doctor (DAN stands for Defeat Autism Now, an organization of specialists who study and treat people with diagnoses of autism and related disorders). Since I’ve been on this journey with 6-year-old Grace, who received diagnoses of Asperger’s Syndrome (on the autism spectrum) and Anxiety Disorder on April 30, she has undergone two major tests: an Organic Acid Test of her urine, which indicated a yeast overgrowth in her digestive tract (not uncommon in autistic children) and a hair test, which indicated the presence of heavy metals in her system (again, not uncommon in autism), not least of which uranium, aluminum, arsenic and tin. So far, we have avoided more invasive tests in order to keep the pain and fear at a minimum. Our next visit, however, scheduled for October 8, will likely include a blood draw.
Since mid-July, Grace has been on an anti-fungal and a priobiotic for her yeast overgrowth without indication of change (other than ongoing constipation or diarrhea – always one or the other), so this was one of the areas I sought to address with the DAN doctor. The first item of concern for me, however, was her nutrition, as she has been on a severely restricted diet (gluten-free, casein-free, soy-free, yeast-free, and sugar-free) since July. The only things she’s eaten in the past few weeks have been organic hamburger meat with organic catsup (no bun), rice pasta with organic sauce, and distilled water. That’s really about it.
Since her self-help skills are delayed (in toilet skills and feeding of self), I feed her to try to get as much in her as possible, but it’s still not as much as should be. In the Lord’s mercy, she’s getting enough to grow in height, but not weight.
Since she was pulled off of over-the-counter multi-vitamins (due to additives and dyes), she has received no added nutritional supplements, other than a chewable calcium I found at a local health food store. The other supplements I tried were denied by the local integrative clinic where I have been taking her until locating the DAN doctor we are now seeing. Although this was a priority for me, my discussion with the DAN doctor focused on the current yeast overgrowth and the heavy metal toxicity (as well as the possible presence of parasites) so we can get an accurate gauge of these things in her system (without interference of vitamins or minerals that might influence test results) and clean up what needs to be cleaned up before supplementation.
Additionally, she’s been lamenting pain in her teeth. A visit to our dentist a few months ago indicated that she has at least four cavities, but we were unable to get her in to a specialized pediatric dentist until September 15, so thank God that’s approaching soon. It is an initial visit and not treatment, but that dentist should be able to provide the treatment Grace requires (soon, Lord willing), as this dentist treats special needs children. If any work (fillings, sealants, etc) proves necessary, she will probably have to sedate Grace due to our girl’s anxiety, so your prayers in that regard are appreciated.
Our new DAN doctor is not an advocate of hair tests for heavy metals, since he says they can be unreliable. He explained how the hair is an excretory part of the body and that excreting metals from the hair may be an actual indication of the body’s ability to release the metals, not necessarily an indication of accurate levels of those metals retained by the body. Likewise, he noted that the absence of metals from the hair may indicate that the body is not excreting them properly. He also pointed out that anything added to the hair (in shampoo or water) may be what’s reflected in the testing, and he therefore wanted to run another test on Grace to see about her possible toxic metal overload.
He suggested that we run a calcium disodium EDTA in suppository form to chelate metals in her system – first by running a pre-test (urinary test) prior to the chelation. That test will show levels of metals in the body, and then after the suppository, we’ll collect urine samples for about a week, and the absence or presence of metals at that time will reveal what has been chelated or not and what may need to be addressed in the future regarding metals in her body. He indicated that this is a relatively safe approach (other chelation approaches may deplete minerals like calcium) and will help to rid her body of metals if present. We’ll do that chelation after the following course of action.
First, I’m bathing Grace daily in a hot Epsom salt bath for at least 15 minutes for as hot of water as she can stand, covering most of her body for as long as possible. This will help her sleep better and calm her, as well as do something (I forget exactly what he said) regarding the next test we’ll do, which will be a re-test of her yeast levels to see where she is. We’ll retest her urine and also test her bowel movements (taking four samples out of three movements, dividing the last movement into two vials) to test for parasites (something not unheard of with yeast infections and something about which I have read in other books discussing autistic kids and their issues). I'll take these samples this week, following one week of epsom salt baths. (Your prayers in this regard are also cherished since, as mentioned earlier, Grace’s bowels are either constipated or she suffers from diarrhea, so testing of stool here at home will be … interesting.)
My impressions of this DAN doctor are very favorable. The doctor indicated that he’s available 24/7 and to call or email anytime with questions regarding Grace’s care or any concerns. He only allows for six patients a day to be seen in order to allow for maximum time with each patient. He never pressed us to hurry up, and he also spent most of the time asking his own questions and fielding mine, all related to her nutrition and behavior. We didn’t have time to discuss Grace’s allergies.
I was very pleasantly surprised when he said to me halfway through the meeting that of primary importance is that I listen to my instincts with respect to Grace. He firmly told me that although he is up on all of the autism-related protocols, he does not know Grace as well as I do. He said if I think strongly that any course of action should be taken, to listen to my gut and follow my instincts, but to bring him along in the process and keep him up to date, since we are on the same team for Grace’s health. He likewise added that if anything he said regarding Grace’s care seemed not right to me, to indicate that to him and to follow my instincts instead. (How many physicians say that?) He pointed out that this is a marathon, not a sprint, and that we’re going to take one step at a time – moving somewhat slowly – so we can accurately gauge progress when it occurs and know to what to attribute it.
Also, I was extremely impressed with the management of his office. It is run paperless, and all of my communications to him about Grace must be either by fax or email. They receive no hard copy mail. As I met with the doctor, he had all of the information I had previously faxed to him (two 35-plus page faxes) on his computer system. As we met, he had a headphone on and occasionally would pause to dictate either what we had discussed or his recommended course of action and it was being typed onto his computer via his voice. It didn’t take time out from the meeting other than a minute or two each time he dictated. The doctor's notes on our meeting were emailed to me within 24 hours.
When I left his office and went up to the front desk, where all kinds of medications were available, the receptionist already had the notes from my meeting with the doctor on her computer, and she was able to give us everything we needed, such as the four kits for the two tests (for yeast and metals), each test requires two samples (the chelation for metals requires a pre-sample and post-sample, the latter collected over one week; and the yeast test will be taken both by urine and stool).
In addition to the four urine and stool sample kits, I left the office with a digestive enzyme in capsule form (that I can open and put in her food or drink) for Grace that we will commence as soon as the samples are all taken and sent over the next two-week period. She will also then receive Omega-3 fish oil in capsule form (to be added to food or drink), but they didn't have that in their office so they'll be mailing it to me without shipping cost, since normally they have it on hand.
The doctor did not want to start her on any multi-vitamins yet since the vitamins he would prescribe are derived from fruits and vegetables, some of which can interfere with her test results in the urine, so we’ll start those multi-vitamins in about a month.
All in all, a good experience and Grace also liked the doctor, thanks in large part perhaps to the social story we read prior to the appointment and her association of his name with a hamburger. (His name is Dr. Berger.) Grace continually teased him about that, and he played along. A social story is a story prepared in advance for kids who suffer from anxiety related to change in routine (many autistic children suffer from this), and so the story prepares them for what to expect. In this case, Grace participated by drawing the front and back covers (the photo for this post) for the story about our trip; The first image is her fishing with me and her grandma and the second is her presenting an I love you card to her grandparents upon arrival (if you made it this far in the post, that is).
Thanks for your prayers, and I’ll keep updating as the Lord grants.