Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 Lynn, are you on the meta-mito-autism board at all? I'm wondering about that possibility... also the role of viruses and/or any seizure activity that has gone undetected. Has he ever been checked for Landau Kleffner Syndrome? Some autistics do have LKS, too. W > > I'm wondering if there is a better list that I don't know of for > someone like me? My son is almost 4, non-verbal, recovering from > autism with some traits still present. He's blind with LCA, although > he doesn't really fit on that list either because he is regaining > some vision and his genetics results are a mystery to the > geneticists dealing with that disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 I'll look into that group . Thanks so much. We were diagnosed as having a stealth virus, but... the stealth virus group wasn't very accepting of his dx because it wasn't by the ONE dr in the US that is dxing them but by one in the Netherlands. Anyway, it's all so crazy. You have been very helpful. Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 Hi Lynn, About a week or so ago I read through the posts and felt out of place too -so don't feel so bad! You're always welcome here Lynn, and I'm glad you are here. I wouldn't know how to help you with the oil formula you are on now since in most of the cases I know higher Omega 6 didn't work -and in most cases the children only needed a small amount of the Omega 6. Also in most cases it was around a 5:1 ratio that worked with the Omega 3 being over the Omega 6 -preferably with the EPA higher than the DHA. In some cases even a 6 or 7:1 ratio with the Omega 3 being higher (when the EPA is what is higher) You are using a completely different formula with the 2:1 ratio with the O6 being higher. Can you send us exactly what dosage and formula you are using currently? I'm only questioning because I know that Austin initially had amazing surges on the basic one capsule formula of the ProEFA, not just with his speech, but his circles under his eyes which is characteristic of his eye condition. From my recall, when Austin hit that plateau or soon after was when you began other nutritional interventions (and I questioned if you were using higher CLO which you reported you were using) I do agree with you search for higher EPA -and that the GLA is still important, but I'm not sure if I recall why the jump to the GLA being so high. I'm just wondering about/suggesting trying to go back to where you started Austin since it was working then, and that's what worked for most of our children -and taking it from there since there is much more we know about where to go from that one capsule of the ProEFA formula and dosage. ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 Hmmm... Everything I was reading on Omegas indicated that the balance needed to be closer, so I'm wrong? Actually Austin's surge started with Efalex. We switched to ProEFA and it stayed the same. Cod liver oil wasn't added until last year around this time and never before that. The other nutrional interventions started months after the loss occurred. His loss occurred after 2 1/2 wks of omega 3, I had upped him to 2 i think? He was highly nutrionally deficient at the time living on dead foods, such as vanilla custard- his mainstay. Never ate meats or vegetables and lived on casein and glutens. We did the fish oil in May 2002, by mid June he was still more awake, but no more speech again. In July 2002 he appeared to have seizures one day, but when we placed him in the car to go to the ER, he was normal and happy again. (Appears to have been related to chlorine in the pool he'd been in and injesting some- intestinal) He had chronic constipation when all this was going on with occassional bouts of diarrhea lasting a few days, then back into constipation. Fish oil has been in his diet since May 2002. What I'm currently doing is- He is eating organic meats, veggies, some potatoes, rice and beans. We alternate his meals so that he doesn't eat a lot of the same thing or repeat for 3 days. He occassionally gets health food cereals with little sugar in them. He can't have glutens, casein or soy. This is proving in testing and he's officially diagnosed with celiacs disease. We hope that when his intestines heal he will once again be able to eat these foods. He gets some snack foods like chips, but limited amounts. He loves his healthy foods and look incredibly good. So, my thoughts were that he may not be getting enough of the 6 fats. Maybe he is though? Without the grains he doesn't get the 3's in his natural diet unless he eats fish, which he gets a little of. Giving his diet do you still feel he doesn't need added 6 fats? I bought the ProEPA capsules at the health food store the other day and am giving him ONE. He is also getting ONE borage capsule. Is this too much of the 6's? My research time is limited right now and all i'm finding when i do research is the closer ratio match of 2:1, with highest being 5:1. The only thing after that is where to buy the oils, not much on how to balance it. I'm the main therapist for him now and we need to play most of the day to teach him how to play like a normal child. He's doing well, his receptive vocabulary is great and his signing is really coming along. We have communication, but no speech. I just think it's too odd he had that initial reaction and now nada. He does say words here and there when not expected. Thanks for anyones input! Lynn > Hi Lynn, > > About a week or so ago I read through the posts and felt out of > place too -so don't feel so bad! You're always welcome here Lynn, > and I'm glad you are here. > > I wouldn't know how to help you with the oil formula you are on now > since in most of the cases I know higher Omega 6 didn't work -and in > most cases the children only needed a small amount of the Omega 6. > Also in most cases it was around a 5:1 ratio that worked with the > Omega 3 being over the Omega 6 -preferably with the EPA higher than > the DHA. In some cases even a 6 or 7:1 ratio with the Omega 3 being > higher (when the EPA is what is higher) > You are using a completely different formula with the 2:1 ratio with the O6 being higher. > > Can you send us exactly what dosage and formula you are using > currently? > > I'm only questioning because I know that Austin initially had > amazing surges on the basic one capsule formula of the ProEFA, not > just with his speech, but his circles under his eyes which is > characteristic of his eye condition. From my recall, when Austin > hit that plateau or soon after was when you began other nutritional > interventions (and I questioned if you were using higher CLO which > you reported you were using) I do agree with you search for higher > EPA -and that the GLA is still important, but I'm not sure if I > recall why the jump to the GLA being so high. I'm just wondering > about/suggesting trying to go back to where you started Austin since > it was working then, and that's what worked for most of our > children -and taking it from there since there is much more we know > about where to go from that one capsule of the ProEFA formula and > dosage. > > ===== > Quote Link to comment Share on other sites More sharing options...
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