| Week 25-30: |
| 6 MONTH MARKER: It has been 6 months since we started this new journey and one of the things that I noticed just recently was that some of the food cravings Gene had seem to have gone into hiding. Prior to going GFCF (et al) he loved jelly sandwiches, pancakes, biscuits (etc...) and green apples. Once I mastered some GFCF & yeast-free recipes, he was always asking when I would be making his "special bread" or "special pancakes"... and would devore several green apples every day if he could... Then the other day, I said to him, "Oh we're out of your special bread, I guess I'd better make some tomorrow, huh?" and to my surprise, he said, "That's okay." Then I was packing a snack for him, he said that Gorilla Munch was fine...didn't want the apple! It seems that he is eating more of the apple now too, not just the peel. It seems that while the gut is impaired and the (undigested) gluten proteins are getting through into the bloddstream and into the brain, the person can experience a "high," but as the gut heals, and the various proteins are being properly digested, they no longer experience the "high" and the food is no longer attractive. The Phenol Effect seems to be similar. The phenol is concentrated in the peel and Gene would eat all the peel first and sometimes leave the actual apple. It would seem that the No Phenol enzymes are helping with this. |
| Week 25 (7/7/02): I did not start a chelation round this weekend (7-5) due to difficulties Gene has been having so I wanted to give him a bit of a rest before starting up again...also I knew we would be at Dad's house on Sat. and didn't want to hassle with meds on the boat, etc. I have requested a new DMSA prescription for 100mg since we are now going every 3 hrs; also I can try going through the local pharmacy. Sunday: We did not go to church this Sunday due to big Gene's kidney stone. We ended up spending about 5 hrs in R.B. Urgent Care, McD's, Ralphs, Sav-On, Kragen (had to run some of Gene's errands afterward)... The kids did surprisingly well. Paul has been here off and on over the weekend and Gene's parents stayed today through Monday. Monday: Big Gene had his oral surgery today. Gene had another hard time at STAR -- not as bad, though. They are thinking of having a 1:1 for him so that he doesn't hurt the other kids. He had a bath first & rested and it was cool outside (but still hot inside). Sunny mentioned about his scratching too - which is partially related to heat too. I have tried to talk to Gene about this ("What can we do to make it easier? What causes you to have a hard time?") but he either just answers "yes" to everything or gets defensive. I thought about a spray bottle to spray him and cool off. About my going once to observe. About withdrawing Rebecca once - to see if there is a sibling rivalry thing going on. Since he is better "on" chelation, I thought I would do his 3 day round during the week so STAR would receive the benefit, but I haven't been able to get together with the doc for the DMSA. Tuesday: I met the doc (with all 3 kids). Gene was fine all the way up to being inside (of course he wanted to explore and had a hard time sitting still. He really doesn't like my having a conversation outside of him, so that made it more difficult too, but the room was very warm (like STAR) and seeing his reaction, I really think this is integral to his behavior. Since the DMSA needs to be ordered, I started Gene on just ALA midday. This is Round 7. I really thought I noticed a difference just with the ALA through the night. Gene had a very good day at Kids Club; he was sitting so nice and quiet when I picked them up (R & C were running all over, though, lol) - he did a beautiful coloring sheet. You see, though, in the PM there are less kids and the room is very cool. I am starting to put calomine lotion under his socks which seems to help too. Wednesday: Picked up DMSA (Chemet) and added it to the round. Gene seemed to do well again at Kids Club. However, he had another hard time at STAR. I setup a meeting for Monday to meet with Sunny to discuss some ideas. It is very upsetting seeing in such a state when I pick him up; when I drop him off and pretty much other times, he is pretty much happy, laughing...when I pick him up, he is all sweaty, eyes bloodshot, all wound up...and then he is back to normal on the way home. Sunny mentioned that she spoke to Dr. Collins and they are going to request a 1:1 support staff. I agreed only from the standpoint that if it will help alleviate the chance of someone getting hurt, but it doesn't deal with whatever the problem is. Thursday/Friday: Gene had hard times at Kids Club. Thursday I just rushed him out, and talked to him that he needs to be good and do his nice coloring...,but on Friday as soon as he saw me, he said, "I'm doing my coloring, I'm doing my coloring." I stayed because he wanted to prove that he would be good (and the other kids weren't ready to go anyway. Well, he sat there nicely for 30 minutes. I spoke to the some of the mothers and the workers...I wanted them to see that the other behavior was not the norm. It was probably because there were a lot of kids and it was pretty chaotic and I dropped them off quickly and ran off. I left several msgs w/ Sunny and spoke to the STAR workers at the outing. Rebecca said that Gene did well. He seemed fine when I left and was much better than normal when I picked him up. Finished up chelation round Friday pm. |
| Week 26 (7/14/02): Sunday: Gene was rather antsy at church this Sunday. Monday: I met with Sunny at STAR and observed part of the time. We talked about the snack time getting difficult due to Gene's changes in tastes; he seems to be attracted again to normal food. Of course, without warning, one of the moms wanted to celebrate her son's bday and brought enough food to feed an army - pizza, drinks, cake and ice cream -- ack and all I brought for Gene was Gorilla Munch. I ran out and hit 2 stores trying to find something attractive that he could eat. When I got back, the mom wanted to do snack early too (an hour early!) so they had already started -- Poor Gene -- but he was very excited when he saw I brought him popsicles and chocolate "milk" and an apple. He ended up doing pretty well. Did have a problem at art, but collected himself enough to move on. After STAR, I rushed off to see Dr. Walsh speak in La Jolla. It was very informative and I began to think from some of what he had said that Gene may be having some problems due to zinc-deficiency. Tuesday: I started Gene on some more zinc (60mg tabs broken in 4 - 3 doses/day; he gets zinc in Yummi Bears at night already). I took Gene and Rebecca to Kids Club, and they had a very hard time. Rebecca was over tired and Gene was upset with the new worker. So we left shortly after getting there. Wednesday: Began Round 8 using lower doses: 33mg ALA & 33 Chemet. STAR went better, in fact, one of the girls said that he was doing "phenomenonally" all the way up to art and then he had the same problem as Monday. And then he started kicking. Friday: I am beginning to lower all dosages, including Taurine, Glycine, Choline, Milk Thistle to 1/2 so that it can be given in 2 doses. Saturday: Since Rebecca had her Brownies Wave Waterpark Outing, I promised to take Gene to the neighborhood pool. We ended up going with Rebecca when she got back. |
| Week 27 (7/21/02): Sunday: I stayed home with Rebecca since she wasn't feeling well, but Gene was ademant that he wanted to go to church. Gene said that both he and Christopher did well. Monday: I met with Sunny & Dr. Collins at STAR and discussed Gene's behaviors. They were to begin at Schweitzer today (and the air conditioning is non-existent - worse than at Walker) and that would be another disturbing issue for him as well as the one-on-one request that they have in place won't be activated for a couple of weeks, we are going to take a break from STAR. Gene is supposed to be in Camp I Can next week and then school starts back -- I don't relish the drive to Schweitzer in the late afternoon anyway(!) So we followed the STAR schedule and did swimming for our outdoor play. It was interesting; we met a family there -- the boy was 13 and has been a mentor for autistic kids at his school. He seemed to be an Aspie -- really into Commercial Airplanes, like the jumping in the pool too, as well as art. The mother asked for my name and number; maybe the kids could get together. Tuesday: Began Round 9 using the lowest dose for his size (even at 33mg that was the highest dosage by the Andy protocol) which is 8mg. That's quite a difference from the DAN protocol and what our doctor was recommending - 150mg(!) I am using only ALA no Chemet. I am just wondering if he is just not tolerating the chelation since it seems like he has done worse (at least at STAR) since we started the chelation. He also seemed to improve with ALA, but I hadn't noticed much improvement with DMSA. I have also decided to drop several of the supplements (Taurine, Glycine, Choline - which I had been using in conjunction with the DMSA). We went to the pool again today. I have really noticed how good Gene is in the pool compared to this time last year. Last year, he would refuse to get out of the pool, and I would have to go in after him -- there was the concern about his using the bathroom, etc. Now, as soon as I say, it is time to go, he is the first one out drying off. Wednesday-Friday: We went swimming each day this week. |
| Week 28 (7/28/02): I did not do any chelation this week due to Gene being in camp; just didn't want to take a chance of any problems. Overall, Gene had a great week at Camp I Can. Each day got better; at the end the 1:1 said that she really enjoyed Gene and that she would miss him; she really liked his temperament - that he was so joyful! Monday: This was an adjustment day, but they went to Boomers, so at least that was familiar. Gene had some problems with splashing other people / landing too close to others (the pool was pretty crowded). Shannon noticed his swiping at someone when he was upset. She separated him and let him calm down. Tuesday: Today was skating and Gene skated for 1/2 hour (he has never skated before; I didn't think he would even try(!) it); he did great. I believe it was today that Gene had to come out of the pool early 'cuz he still was having troubles with splashing. Gene went to his first AYSO soccer practice and did fine. The coach talked most of the time and the kids messed around in the background. Wednesday: Today, he finally was able to be tested for the swimming /going down the slide - he passed and he LOVED it. He stayed away from people -- a very good day. Today was Pirate's cove; he really enjoyed the roller coaster. Thursday: Gene was able to go down the slide again. Today was Chuck E Cheese. Another very good day. He chose to sit in the back of the bus where it was very bumpy...and he loved it! Friday: This was the last day; BBQ; rock climbing, bouncer... he got 2 tries at the rock climbing. He made it 1/2 way and came down the first time, then on the second try everyone thought he was coming down at the same spot, but he only paused and up he went...all the way to the top!!! The people were pretty amazed! He has never done this before! Saturday: I went to the Dr. Jerry seminar - very interesting. I started noticing Gene really being more "with" it -- can't really describe it, but definitely more verbal....more appropriately verbal...I was noticing that the looking ouit of the corner of his eye and the cupping of his mouth and pinching down one side of his mouth are pretty much all gone. |
| Week 29 (8/4/02): I will do a chelation this week Gene has done very well all week at school. Sunday: I was noticing more positive things about Gene today. Wish I had written this entry on Sunday, so I would catch everything, but one thing I remember vividly was Gene was playing Harry Potter on the PS2 and came to get me for help. He said, "Mom, will you help me, please?" (wow, good manners!) then we did the activities with his hand over my hand. He said, "We did it together!" and as I was leaving the room, he said, "Thank you for helping me, Mom." I was taken aback!! Monday: We took Gene to Santa Clarita today (4 hr drive!) for Pfeiffer labwork, cursory physical, history. They drew 6-7 vials of blood, cut his hair, and took a urine sample, so it wasn't the thrill of his life, but he did fine. Tuesday: Okay, I wasn't dreaming on Sunday when Gene said, "Thank you for helping me, Mom." Because he did it again today! He had a good day at school and was well-behaved at the pool again. Wednesday: S B Thursday: Met w/ Loree for IPP. We are stopping the STAR program since it is about 1.5 yrs anyway and he would have graduated anyway in Sept. Loree noticed Gene's improvements. She also noted that one of the regional reps has seen Gene at school and said how well he has been doing (1:1 -- no way!) S B Friday: Went swimming this PM. Began Round 10 using the low dose (16mg) of ALA again.. (note: L.B) Saturday: Today is Gene's special bday (10 on the 10th!) All day (and actually a number of times during the week) he commented on that it was his bday. When I helped Gene w/ Harry Potter this time, he thanked me immediately after helping him. He helped me make a brownie cake and he let me sing to him and he blew out the candles. He opened a present from Rebecca and a card from Mom. |
| Week 30 (8/11/02): We were off chelation this week. Sunday: Monday: Gene's day at school was up and down (probably because of the chelation weekend). We celebrated his bday at school. Got GSDL specimen ready to send out for the AM. Tuesday: Today was back to normal at school. Gene's soccer practice didn't go great; things are not that structured, but the time the drilling starts (30 mins in), Gene is ready to go. While Gene was messing around at goal, he turned around and gone nailed square in the face with a soccer ball. ack. Downward after that. L B Wednesday: I'm wondering if Gene's salt thing may be going away. I asked Gene (after he ate a bite of food) if he neede more salt. He said that No, it was fine. Never in the past would he turn down an offer for salt(!) Minimum Day at school. I am going to start giving enzymes with every meal/snack. I hear that that may help with O/C.issues. Thursday: Gene did very well at BG Club. We were all prepared for him to use the computer lab (they had been upgrading the computers for months and were supposed to be ready to go in July - one of the reasons we haven't been there - he was always so disappointed when the lab was closed). Well, the lab was closed...but he handled it with no problem. He went into the "play room" got down some paper and markers, sat with the group and started to draw. It didn't seem to bother him that the regular people weren't there, and when I picked him up, he gave me no problems (like before when he would kick whoever was near(!)) Friday: Today is picture day; unfortunately I didn't have time to track down gel and do his hair nicely, so I will just cross my fingers.Today we are going to a "social" run by one of the moms and CARD. Unfortunately, the traffic was horrible, so we got there late, but the kids had a good time anyway. The therapist cancelled also... we'll try again next week. Saturday: Today is Gene's first soccer game, but we were given the wrong time so we missed it(!) |