Guest guest Posted December 24, 2003 Report Share Posted December 24, 2003 I believe I posted last year after hoping to begin a year of pro- biological helps and treatments for autism. We have tried a number of things in the past year that have all helped along the way. I'm sure there may be a lot of criticism and concern about my post, however I am not advocating anyone try what we try/do. At the same time, I think all information can be " informative. " Our 4.7 year old was a heavy stimmer last year this time. Very little eye contact, very introverted, good tempered, but little to no social interaction with other children or adults other than dad and I. Very little consideration for others (stepping on another's foot or climbing on others in his way). While he enjoyed television, he didn't seem to understand it. Only liked the colors, and changes in scenes etc. He had little to no language and used crying and screaming to get his way. His attention span was very short outside of watching television. He seemed to catch on to following directions but had little motivation to do activities other than his own interests. He liked blue objects and picked them out of everything. Every now and again he picked red. Shrug. I figured something visual/color spectrum. We did do one hair test and probably need to do another soon. Because of hair test and observation of his behaviors/difficulties we tried many things. Ionic minerals/Liquid vits and minerals/Minerals in Water/WaterOZ and a few other brands I can't think of: Selenium, Zinc, B1, B12. All of these seemed to help in minimal ways with overall emotional stability and bowel funcition. High Dose Vit A therapy. Improved eye contact and reduced stimming, helped with bowel formation...does wear off if we let up on the continued protocol of vitamin A each day/week/month. We have done many rounds with ala and dmsa combos, also some with just dmsa and some ala only. Low and frequent. We ran into what some other parents seem to: gains the first day or so of chelation then loss of that later in the round or no maintenance of it afterwards. We saw slow and steady progress with eye contact, listening, attending to tasks the first six months of the year, but no improvement in socialization or language understanding/retention. After reading Amalgam Illness our family decided to try things a little differntly: Tightening up on dose schedules, with only one parent administering if at all possible. Being very strict about 1-3 hours inbetween dosing. Towards the middle of the year this helped us see more improvement in socialization, attending and beginning of understanding language. Receptive most of all. The color red began to be chosen out in his color choices as well as blue. Towards the end of this year we have stuck with tight scheduling of chelation dosing (no more than 1-3 hours in between chelation). This meant I had to quit my part time job and focus in on what was working best for our son. I also kept him home from pre-school, where it was more important for them to get him " used " to the class room than to teach him/help him to learn to speak. They said, " He will speak when he is ready. " I pulled him out. I thot that was crap. Obviously there were things stopping him from speaking and either he needed intensive therapy or something else (biomedical) needed to happen to help clear his brain so he could consentrate, remember/retain, and express. We could continue to go with ala/dmsa low and slow for the next few years, but I wondered how long it would take, and if anything else could help. We tried three other methods/things this fall: 4 chelation/metal pulling rounds with cilantro/dmsa. We cautiously approached this. I read Andy's big, concerned and rightfully so post regarding cilantro, and I took it to heart. But I also took my son's level of delay and my concern for him if anything happens to me before his protocols show more lasting improvements. As parents we took responsibility for our child to try this method " low and slow " , watching carefully each hour, each day, hoovering over our son's every action and show of how he was feeling. I won't detail how we used cilantro, but anyone can email me if you want to know--also if you are willing to take your own responsibility for your child and what you are attempting. Our take on cilantro is this: this herb/plant is legal and available at any grocery store. Not a lot is known about it, and high, infrequent doses can be dangerous and do PERMANENT damage. Like ALA, and like DMSA. We were going to treat it cautiously like any chelator, metal pulling agent, or whatever it turned out to be to help pull mercury and other heavy metals. We won't/don't advocate that any other parent use this method. It was just a choice we made to try it. Immediate results of using low administration of cilantro and consistent dmsa doses for complete " rounds " /periods of days were in this order: index finger pointing, sibling rivalry (taking notice, controlling toys, territory, figuring how to push around), more color diversity (green, purple, blue, red, pink); more sibling interaction, helpfulness around the house, following commands, more diverse play at playgrounds, and a lot less stimming. When these rounds ended, we saw retention of gains at least 50-70% greater of what we had seen with ala/dmsa. With greater social interaction, greater memory and language attempts we have taken long breaks in between the cilantro/dmsa " rounds. " Breaks to see what exactly is gained/retained, and to see if there was any damage/negative effect that can be SEEN or noted. Unfortunately we don't have access to labs for kidney and liver enzyme analysis like I would like. So all we can do is take long breaks inbetween. However, gains are so marked it's like having been on a number of rounds with ala/dmsa in that the gains are forward moving and lasting. As I am concerned about the brain replenishing/repairing after metal removal in between rounds with cilantro/dmsa we use GABA, Gotu Kola, and Bacopa. I believe these herbs affect the temporal lobe, but I need to do more reserTo tell the truth if I had not seen the gains on the rounds it would be harder to tell what's helping " most. " The bacopa and gotu kola DEFINITLY helped with memory and greater ease in language attempts. Since adding the GABA, and two herbs attention to detail has gone up 100% and tiny things are noticed everywhere. Another thing we just tried this month was an extended ala only round with strict timing on doses. Every 2-3 hours of ala only. We gained greater hand gesturing, with 7-10 days of ala only. That for sure. He is pointing with flourish. He did seem to get sick near the end of ten days. No fever, but after receiving zinc and other supplements he had a day of throwing up, a little diareah. May have been the zinc, or just too long on the round. However he had little to no irritability, slept well, and played well. Over all, in one year we have this summary: Lots of things tried, lots of things long term gained. OUr son understands language and is talking more and more. Something we didn't have last year. He counts aloud, follows videos, tells us what candy, cookies or chips he wants. Shares his toys with us, and on command will " share " with younger brother (tho not happiliy! LOL), and video time. Communicating in diverse ways. His stimming is decreased (some just gone) by 70%. He knows the diff between smiling and crying. Our son will try to sing more instead of screaming things out, anticipates " discipline " when he does something he knows we don't approve of. It's not a perfect " healing " , but it's sooooooo much more than we had last year this time. I felt fortunate last year, and even more this year. I can take my son anywhere and he only sticks out when he tries to verbally communicate and he sounds like a baby talking. That and we haven't made it him letting go of poo poo on the toilet. Still in pull ups. But I'm hopeful for this year. We don't have a screamer anymore, but a communicator. Still selfish, but he's learning not to do unacceptable things by paying attention. He has enough attention span to work with trainings. We go to church and my son doesn't scream all thru service, nor cling to me all thru. He will play in a nursery and share toys and food. Instead of just blue toys being his favorite, he has so many " favorite colors " that he ends up with all the toys gathered around. Blue, red, green, pink, brown, etc. Eye contact motivation is not " there " yet, and he still is elementary in his sounds and word attempts, but the roots of communication are there. He makes good sounds, repeats what we ask with a good try, and understands more and more. He has words that he likes, " water, " " brown " , tries to repeat phrases, etc. I'm sure there are other supplements I've missed talking about--LIKE another brain repairer/restorer we now use everyday, flax/borage oil caps. Language really started forming/attempts to speak out, sing, after beginning this. Adding Bacopa and Gotu Kola increased attempts and seemed to keep the ball rolling. Whew, this dealing with autism is NOT easy. Making choices on what to try, what's working, what works best is NOT easy. But, as a parent I can say we've made decisions and tried some things, tried our best to be careful, and we have hope for next year. If we can get the potty training thing down by next August (plenty of time!), my son can surely go to kindergarten if we choose. I really believe that's possible now. Regular kindergarten, I hope. It's just nice to have some hope. I believe one of the posters on this list said something like the worst thing to try is to try nothing. I believe that. We may be on the other side. That's just us. We actually haven't tried " everything " but a few good leads. I'm not sure yet what we're going to do for the next year, but we have a good enough head-start to try ala only low/frequent doses, but perhaps on extended rounds instead of 3-4 days. Perhaps 5-10 days unless we see stress or " negative reactions. " Have happy holidays everyone! Lyn Mom to Tee, 4.7 yrs Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.