S0 Far s0 G00d

Well, we gave Ben regular pizza and n0thing much happened. I'm still d0ing the enzymes s0 it p0ssible that they're are d0ing the j0b 0f helping digest, but 0n the wh0le he hasn't regressed, his receptive language is still g00d, he's still d0ing his w0rk at sch00l and at therapy. He's still m0stly gluten and casein free, but I'm adding m0re back int0 his diet. The 0nly bad thing I've n0ticed is that he's yelling m0re, which had kind 0f subsided. I'm n0t sure if I'm just being super sensitive t0 it 0r n0t. I'm 0n the c0uch this m0rning as my back has started hurting again, this time in a different place that it usually d0es. I guess I'm falling apart. Get 0ut the 0ld heating pad, I guess. The pe0ple in charge 0f Headstart are acting kind 0f strage. I had written a letter t0 Ben's teachers at the beginning 0f the year inf0rming them 0f the changes in his diet, the enzymes and the high arsenic results 0f his hair and bl00d tests. I just asked that they be mindful 0f n0t letting Ben chew 0n the playgr0und equipment and wash his hands when he c0mes inside. N0 big deal, right? Wr0ng. His teacher f0rwarded the letter t0 the pe0ple wh0 run the Headstart and early interventi0n pr0gram and they seem t0 be freaking 0ut. They've sent the health dept t0 test the playgr0und equipment, but refuse t0 tell Ben's teacher what the results were, saying its "private". Yeah, but it's a public sch00l paid f0r by 0ur taxes s0 y0u can bet I'll be trying t0 find 0ut what they kn0w. N0w they want me t0 fill 0ut a f0rm s0 they can talk t0 Dr. Hines ab0ut the results, which I have n0 pr0blem with, but they already had s0me0ne call me (she left three messages 0n my answering machine in 0ne aftern00n- s0unding a little harried) t0 find 0ut the details, did Ben eat seaf00d the previ0us week bef0re the testing, what kind 0f testing is was, what were the exact results, etc. Anyway, they are making a way bigger deal 0ut 0f it than I am. Just put in s0me new playgr0und equipment and be d0ne with it, I say! Well, I'll sign 0ut n0w. Bye!

I Guess I'm a Lazy Bl0gger!!!

It's been a while since my last p0st. S0rry ab0ut that. But t0day, I am g0ing t0 give Ben a test. We are g0ing t0 take the kids t0 Chuck E Cheese's t0day after church and I'm g0ing t0 let him have pizza, the regular kind, with the enzymes 0f c0urse, and we'll see what happens. I'll give it a few days and keep him 0n the GFCF diet 0therwise. If the enzymes d0 what they are supp0sed t0 d0, we sh0uldn't see any difference. My plan is, if this w0rks 0ut t0 p0ssibly try intr0ducing hard natural cheeses, like cheddar and parmesan, int0 his diet, because they are all0wed 0n the SCD diet, and then maybe add s0me g0at's milk y0gurt. Eventually I will pr0bably try the SCD diet full fledged, unless we start seeing s0me very c0nsistent impr0vement 0therwise. But f0r n0w, it w0uld be nice if I c0uld br0aden his diet with0ut hurting the impr0vement he's made. His receptive language is s0 g00d n0w, meaning he f0ll0ws 0ne step directi0ns alm0st with0ut hesistati0n. He's w0rking really well at the therapist's and even yelled "Ahhh D0ne" when he didn't want t0 c0mplete a task with his speech therapist. His teachers at sch00l have n0thing but p0sitive things t0 say ab0ut him, but his Sp Ther. there says he's very c00perative but still n0t engaged in what he's d0ing. He still stims all the time, but can be redirected fairly easily. He's st0pped chewing 0n all the w00d in the h0use (thank g00dness) and is dr0pping things a little less 0ften. He's als0 st0pped jumping up and d0wn all the time, and n0w 0nly d0es it 0n his tramp0line, which he uses quite a bit. I'm trying t0 give him a l0t 0f meat t0 eat every day s0 that his ir0n levels will impr0ve with0ut the use 0f a supplement. He had a bad night last night th0ugh, and was up at 3:45 f0r wh0 kn0ws h0w l0ng, and s0 c0nsequently, is still sleeping as I write.

Talked With Dr. Hines Again

Dr. Hines did a phone consult with me on Sunday morning. We went over all of Ben's tests and she explained some things to me I didn't know and gave me some new recommendations. Even though, Ben's tests didn't show a significant level of mercury, she remains convinced that it is a major problem with him. He's very low on zinc and iron (iron deficiency alone is a cause of mental retardation) and the depletion of basic minerals isn't even allowing the mercury to come out in his urine, thus the low test scores. So we're still going to do the NDF Plus for now. As for all his food sensitivities . . . she says because he tested positive for 21 items, and that's pretty high, she says that definitely indicates a leaky gut (thought to be a cause of autism for those of you who are saying HUH?) and she is recommending another diet called the Specific Carborhydrate Diet, or SCD, which basically cuts out all grains and most starches, leaving basically protein, fruits, nuts and vegetables and some dairy. It's kind of like the Atkins diet. I've been researching it, and it seems to have a terrific track record helping all kinds of intestinal disorders, including kids with autism. But it will not be easy to do, so I'm still mulling it over. I thinks Ben has been doing well on the enzymes and a 99% gluten free, casein free diet, but sure, I'd love to shoot for the miraculous. I'm adding a probiotic to his regimen, on her recommendation. A probiotic is a dose of good bacterial cultures to help with intestinal healing. In theory, we should all take probiotics. I'm thinking about adding another enzyme to his diet, this one called No Fenol, supposedly it aids gut healing without the need to go on the SCD. I would love to find an easy way out of having to put him on the diet. I guess the good things about it all it, its short term. We should be seeing improvement in a month, if there is none, then he goes off the SCD diet. But I think I'll try the No Fenol first. On a positive note, some of you may remember I did the ATEC assesment two months ago and Ben scored a 102 on his autistic symptoms, which puts him up there in the severly affected category. Rob and I took the ATEC together ( to keep me honest ) two nights ago and Ben only scored a 62! So we've definitely seen some quantifiable improvement. Last night at dinner, he took a big bite of it (chicken with pineapple BBQ sauce and white rice, if you care) and said "Num num num num" and signed "more" before feeding himself another big bite. I think he was complimenting the meal! Tonight, I asked him if he wanted a cookie and he immediately signed "more" for it when I waited for his answer. I think he's getting the basics of communication down. Hopefully, I'll have more good news soon.

Th0ught 0n Katrina

Father J0hn, 0ur dev0ut, liberal yet s0metimes 0verly critcal priest said s0mething a c0uple 0f weeks ag0, even bef0re the wh0le Katrina disaster happened. He said in his h0mily that we did n0t get t0 live 0ur lives 0f c0mf0rt and pr0sperity here in Chapel Hill because we deserved it, 0r earned it, 0r even were w0rthy 0f it. We live here as we d0, as citizens 0f the middle class because we g0t lucky. We "w0n the l0ttery 0f life" as he put it, and we w0n it big. As I reflect 0n what happened t0 the very p00rest 0f the p00r in New 0rleans, I c0mpletely agree. R0b said the he g0t l0st in New 0rleans while he was visiting Keesler AFB and ended up in 0ne 0f the p00rer secti0ns 0f the city. He said the p0verty there was ast0nishing. S0me h0mes didn't even have d00rs. These pe0ple already had very little t0 begin with, and n0w they have n0thing. It makes anything I feel like c0mplaining ab0ut seem very miniscule. I c0uld rant ab0ut the unfairness 0f life, but b0y right n0w I d0 feel very lucky.

Playing Catch Up

I know it's been two weeks since I've last written in my blog. I'm going to blame it on the stupid O key on my laptop, since it makes me dread typing anything of any consequence. I'll use 0 instead. T0day is perhaps the m0st beautiful day all year. We're all 0utside right n0w c0unting 0ur blessings and enj0ying 0ur family. Katherine c0mpleted her first week 0f kindergarten last week, and s0 far s0 g00d. We had a bus mishap the first time she t00k the bus h0me fr0m sch00l (it came t0 0ur st0p 15 minutes early and I wasn't there yet), but it didn't seem t0 affect her a bit. Everything has g0ne sm00thly ever since. Ben started sch00l last Wednesday and s0 far, he's d0ing well. He als0 had his first TEACCH sessi0n 0n Wed f0r tw0 full h0urs and the teachers said that he did great! That was after being in sch00l f0r a full m0rning. I j0ked that he didn't have time t0 stim at all that day! Maybe the enzymes are helping. I've st0pped giving him the chelati0n supplement NDF Plus until I c0nsult with his Winst0n Salem d0ct0r next week. His lab tests have all c0me back and n0ne 0f them have sh0wn any excessive level 0f mercury, s0 maybe that's n0t his pr0blem. Just g00d 0ld genes I guess. Last night he was crying ar0und dinner time and he said "I da-dee" several times and I think he might have been saying "I'm hungry" but I d0nt kn0w f0r sure. If he was, he used the pr0n0un I c0rrectly, and that w0uld be awes0me. He did 0kay at the speech therapist this week, but Car0line and I had t0 stay with him while she w0rked. Car0line starts presch00l 0n Wednesday and b0th she and I are very excited ab0ut that. I can't believe all my kids are finally in s0me kind 0f sch00l. It's g00d f0r me and g00d f0r them. I pr0mise t0 write m0re s00n.
Kristin