Weeks 13-18: |
Week 13 (4/14/02): Completed stool sample - pickup 4/16/02. It has been mentioned, and I really notice it, that Gene's eye contact is so much better. He still has the "looking out of the corner of his eye" from time to time, but for the most part, he really makes an effort to look at you when he is speaking to you. I noticed the other day that when he was playing on the computer and speaking to me, he would continually turn away from the monitor in order to make eye contact with me...even "normal" kids generally don't do this. |
Week 14 (4/21/02): I forget which day this was, but I caught dancing, kindof a "shag" (:-) I asked him if he was dancing and he said yes! Tuesday, 4/23/02: At an ASA meeting last night, I got some SNT capsules, so today I started Gene on them. I also received the Carnosine which I would like to try out tomorrow. When Gene was eating dinner tonight, he asked a question, I didn't answer; he stated the question again, I didn't answer (I wanted to see what he would do). He made an effort to look around the refrigerator and say "Mom?..." and then asked the question. This is the first time I have ever noticed him do this...which is totally a normal way to react. Wednesday, 4/24/02: Began Carnosine, very low dosage to start with add'l Vit E (guess I may not need this since I added the add'l zinc & Vit E. in SNT). Ordered Chelation support & Kirkman's Idebenone -- order #: 1019659256-686453161 Gene had another good day at STAR (he has had good days at STAR and school for weeks), but today he was doing exceptionally well (the supervisor even said she commented that he could be one of the "peers" (the NT kids that help out) until a couple of times he seemed to just lash out very impulsively to another student and immediately apologied. Saturday, 4/27/02: Met with Gene's dr. re: latest test. Sensitivity portion was missing, so we will need to run the test again. Page 1, though, showed that Yeast was down from 4+ to 2+ (yea!), but some new bacteria had appeared and some good bacteria has been making a seady decline. We decided to hold off on the Primal Defense in case it is killing off some good bacteria. Got a new prescription for Sporanox -- maybe this will knock out the yeast once and for all. After the Sporanox is completed, we will begin the chelation process. The dr. will have the compounding pharmacy call me so that we can discuss insurance coverage. Gene is done with the CSE's: FGF2 / IGF - I asked for the doc to look at a post from Biomedcomm re: hGh and HGF and perhaps we might consider moving on to that combination. I also asked for a comment on the tartrate issue of it being a yeast biproduct. Began Gene on Noni Juice. Reintroduced E Coli and HMF Forte |
Week 15 (4/28/02): Sunday, 4/28/02: Gene had a very good day at church today. He sat (relatively!) quiet, still and sang the songs. The few times he spoke to me it was whispered. He had very little, if any, stimmy speech. Friday, 5/3/02: I was trying to remember Gene's teacher from last year and, giving up, I asked Gene if he remembered his teacher's name...from before Mrs. Wann. He replied, "Mrs. Obremski" (that was his very first teacher from Preschool/Kindergarten ...7 yrs ago!!! and not an easy name either) ... I was surprised also because whenever I would mention her name since, he would get overstimulated and close his ears and say things were "too loud" He said her name very calmly and matter of factly. |
Week 16 (5/5/02): Wednesday, 5/8/02: Gene had a very hard day at STAR. Don't know what caused it; he was having difficulty making baskets when they practicing shooting in the playground (which isn't necessarily unusual), but he became overly frustrated and agitated and threw that ball at one of the other kids...then since he knew he wouldn't be getting his rewards at the end of the day, so that made him madder and did a lot of hitting. Hmmm Thursday, 5/9/02: At the Boys & Girls Club today, I was very nervous because Gene usually spends the majority of the time there playing in the computer lab, but it was closed today, so I came back 15 minutes early just in case they had problems. When I arrived, I peeked in and he was sitting so nicely and calmly, writing and coloring. Kyle and Lindsay said he was there the whole time. I finally got the stool sample so it is going out tomorrow: airborne 1982437041. We can now start the Sporanox course. Friday, 5/10/02: Noticed that the compounding pharmacy goofed and sent me the wrong medication(!!) We received DHEA instead of DMSA(!!). Added Milk Thistle and Idebenone. GSDL has received specimen, so next week should get results. |
Week 17 (5/12/02): Monday, 5/13/02: Gene had a very hard time at STAR...don't know if this resulted from DHEA. He was kicking, hitting... throwing himself against walls/tent, stimming... Tuesday, 5/14/02: Rec'd DMSA. Picked up Sporanox and began the dose. Began Selenium sup. Friday, 5/17/02: Started the Taurine & Glycine in prep for the weekend. |
Week 18 (5/19/02): Well, we survived the Round 1 of chelation with DMSA -- Gene did great; no problems with taking the caps in the middle of the night, even drank the ones I had to mix with juice (the stuff is nasty smelling and tasting!!) Didn't really notice any differences one way or the other so far. Monday, 5/20/02: Heard back from doc. re: latest microbio. test. Candida was up a bit, but Sporanox should hopefully be handling that. Bifidobacterium was low, but the Lactobacillus was up into the green for the first time. The E Coli was OK too for the first time too. The new "bad" bacteria that showed up last time was gone this time. All in all, this was good news! Friday, 5/24/02: Gene had a hard day at school - seemed to start after they explained that Monday was a holiday and he wouldn't be going to school -- messed up him mental schedule. |