Dancing in Cornmeal
Life With Autism
June 21, 2005
It?s been 2 years and 9 months since Lauren?s last DAN! Journal entry and I apologize for that. I have a few reasons for my procrastination, and I hope you find them legitimate. I mention them at the end of this entry. Thank you for taking the time to read about Lauren?s and our family?s experience. I hope it?s been of some benefit to families who are considering the DAN! protocol.
We have continued with Lauren's DAN! doctor and I'm still a fervent believer in DAN!, even though Lauren isn't one of those miraculously cured children (yet). I never dismiss the possibility, though, because we are definitely on the right track. Everything we encounter with Lauren reaffirms that her problems are GI/digestive-based. And, the biomedical approach has always provided us eventual relief, whereas mainstream pediatric ideology about autism has consistently failed us at providing Lauren relief from any of her difficulties.
I don?t think I made clear in earlier journal entries that, by the time I published Dancing in Cornmeal, Lauren was going on 11 years old and had reached a pre-puberty phase that was extremely self-abusive and aggressive. I can?t convey to you in words how difficult this time was?particularly heartbreaking because we know our child doesn't want to hurt herself?she's crying for help and there's no help to be had. The absolute worst moments ended when I spoke to Dr. Rimland from ARI and he advised me to meet maximum dosage of B6/magnesium (in Lauren's Supernuthera) and to start a trial of DMG again. Just the fact that Lauren's aggression receded virtually instantaneously upon these changes is testimony to biomedical and natural approaches.
Lauren is still on many daily supplements, though the list is reduced from that I reported in Lauren?s last journal entry. Over the years, we have cut back on things that seemed to be redundant with the ingredients in Lauren?s SuperNuthera, and we?ve taken things out that seemed to hurt rather than help. Lauren?s diet has also improved, making some supplements less necessary. Lauren now eats more vegetables (including broccoli and green beans!) and often leaves the table without tasting even one carbohydrate! Lauren?s digestion has probably improved just because of these new habits.
Lauren?s daily supplement schedule currently includes:
Cod Liver Oil
Coromega (also fish oil, but yummy)
Pro-Culture Gold?a probiotic that replaced Culturelle, because Culturelle is not dairy-free
Pro-Bio Gold?a probiotic
SuperNuThera without vitamins A & D?a multi-vitamin with extra B12 and magnesium.
We took Lauren off of her personalized Amino Acid supplement after about a year. It seemed to make no noticeable difference, and it could not be combined with many of Lauren?s other supplements, which made daily administering of everything she needed very difficult. If I had tasted it from the start, I probably would not have given it to her at all. I decided to finish off her bottle when we stopped giving it to her, and I took only one dose, because it tasted exactly like vomit! I admire Lauren so much for putting up with everything we force her through, from cod liver oil, to vile tasting amino acids and chalky laxatives. It?s a wonder the child isn?t constantly afraid to open her mouth around here!
Lauren is no longer on Miralax, her prescription-strength laxative, either. While on it, Lauren?s length of time between bowel movements did not decrease. In fact, the only change Miralax seemed to make was to cause Lauren extreme pain. There is usually a solid blockage at the base of Lauren?s colon, which she simply needs to not be afraid to pass. The laxative seemed to sit at the top of the blockage, never making its way through it, but only causing upset and severe pain higher up in the GI tract. Miralax contributed intense pain to the constipation-experience, without any more frequency of BM?s. In fact, the pain seemed to make Lauren less able to relax on the toilet and her BM?s were farther apart than when we took her off the Miralax. For laxative qualities, prunes and raisins helped with frequency, but contributed to Lauren?s behavior problems, probably because of their fermentation in the GI tract. High levels of unhealthy yeast have continued to be the greatest cause of negative behavior in Lauren over these past few years.
Though she?s better, Lauren continues to be constipated on a regular basis. At our last appointment with Dr. N, he advised that our next step is to submit paperwork, as well as lab test results, to a doctor in NY who is a gastroenterologist specializing in children with autism. (Dr. N. tells us that 70% of the children he has sent to this doctor have had enterocolitis. We suspect that this is Lauren's problem, but hopefully we'll find out for sure with this doctor and he will be able to provide healing. There is a procedure this doctor does to correct enterocolitis.) This doctor will tell us whether Lauren's lab tests and history point to such a condition. If so, then we will make a trek to NY to see him. The difficult part of this is finding labs here that will perform these tests required, and once we find the labs, to actually collect the samples! But, that is our current goal, and we will eventually meet it, as we always do, because Lauren needs us to.
Until Lauren?s GI problems are solved and healed, we will not be pursuing mercury detoxification. We still believe that mercury poisoning is a/the likely cause of her autism, but she needs to be eliminating waste regularly before this protocol can work for her. We shouldn?t stir up metals in a body if they won?t quickly be passed out of the body.
Lauren did receive a second trial of B12 shots, and her dad and I administered the shots ourselves! However, Lauren?s behavior worsened after a short time at the high dosage, so we ended the trial early. Dr. N. said that this is likely because of the problems with her sulphation pathways.
I?ve so far followed up on everything mentioned in earlier journal entries. It?s taken me so long to write this update for a few reasons. One of these reasons is that Lauren got her first period at the age of 11 years, 3 months! Suffice it to say, that was a whole new ball of wax. Another reason is that I actually feel kind of like a failure, having no great epiphanies or medical breakthroughs to share. I imagine what we have learned is still helpful to others, so here it is.
A final reason I haven't updated the website is that, in the earlier updates, I had never shared quite how bad Lauren's aggression had been. I made a vow when I wrote the book and began the website that I would never write anything that Lauren might read someday and be embarrassed about. (Every pre-teen and teen needs and deserves privacy, even if mom does like to share and could help the world by sharing! :-) So . . . how do I share about her aggression and puberty without chancing mom telling way more than is acceptable from a pre-teen's point of view. No, Lauren doesn't yet read (that we know of), nor does she talk enough to share such feelings, but I try to follow my own advice about empathy and treat her like any sensitive teen. So, without her permission, I won't publish details I think might embarrass her, but I will talk about these things and answer questions in person (when she's not in the room. :-)
I may not update this site again for a long while, because there may be no changes to report. My intention is to report here after we have seen the gastroenterologist and, hopefully, have good news to share about Lauren?s health and progress.
Right now, maintaining Lauren?s supplement regimen, therapies and daily teaching, Lauren is making slow but steady progress again. (Before we began the DAN! protocol, she was regressing.) Most importantly, she stays calm most of the time; when she?s calm, we hear more language and are able to have many full and meaningful interactions. Lauren delights my heart many days and I could live with that the rest of my life. But, I do want more for her, and we?ll keep on searching for what will heal her and give her the greatest chance for a full life.