Guest guest Posted January 20, 2008 Report Share Posted January 20, 2008 > > > This is something we have not come to as yet but planning to. What > exactly would the viral protocol entail? There's a file in the file section that might help you. It needs to be updated again, but it does cover quite a bit about what a viral protocol can look like. > Norman is on therapeutic doses of B6 and also has additional B complex > and magnesium. We've been on TMG for over 8 months at 750mg, maybe > moving the dose to later in the day perhaps??? Maybe consider increasing it? I know for my son we had him on pretty high doses of DMG and at that we would get hypractivity. I now have him at about 1000 mgs a day. We've tried Idebenone, > would it work the same way as CoQ10? I'm not sure about that. People seem to disagree and I don't know enough science to have an opinion. .. > > Anyway, maybe some sort of protocol to produce hyperactivity during > the day, and another to reduce it at night (5htp as I mentioned > before has helped here, but also GABA, mag, etc) might help. > Did try GABA for a short period, when trying to see if it would calm > seizures down some, but there was no effect on sleep. I have to say > though that when he was on tryptophan there seemed to be some very > subtle changes to his sleep but it was not really obvious. We ran out > of the tryptophan, just at the time when starting complex amino acids > which included the tryptohan. > > What is interesting though is the first amino acid test thru IWDL > indicated tryptophan levels to be Low at 24 (ref range 23 - 58) and > 6months later after the amino complex his 2nd amino acid test > (metametrix) tryptophan levels were improved at 33. > > Given these results, would his first level of 24 have contributed or be > the cause of the sleep problems? Unfortunately we ran out of the > complex and our DAN felt it was worth doing a repeat amino test before > supplementing further. Maybe with further amino's including > tryptophan, the sleep problem could resolve, what do you think? We have > only just restarted the complex amino's. This is only my really uneducated opinion, but I would use 5HTP as a seperate supp from an amino complex (although I would also use an amino complex as they can be VERY helpful for lethargic kids). I have a feeling that the levels of certain things our kids need might measure normal, but really they are low (per study). So, I wouldn't hesitate to go higher with the 5 HTP and see if it helps sleep. I give ds his about an hour before I hope he'll sleep. > > I would also consider trying to get any help possible from absolutely > any source to engage your child as manically as possible during the > days, even if it's only for a short burst like one week, just to try > to break the cycle somewhat. Family, friends, siblings, > therapists? Since we've pulled Kolja far enough along to make him > able to laugh, we've seen sleep improvements. I think part of it is > the releasing of endorphins. He feels better, less anxious, and > therefore can sleep more soundly. > > Very good idea! but not such an easy task over here with the attitude > people have towards epilepsy, that together with his extremely poor > balance, coordination, his size and the fact that he needs someone to > actually hold his hand to keep him from crashing to the floor and just > being very bad at managing his body makes it a very hard task to keep > him up or on his feet. I know. We've only ever found one person who was actually good at working with Kolja. The rest, even with good intentions, weren't athletic enough. Some just didn't even have good intentions. > > I've often thought that the best therapist I could hire for my son > would be a hyperactive, overachieving, former Olympic gymnast who > loves kids. Someone who could expend the incredible energy that it > takes (beyond normal human capacity, IMO) to engage Kolja all day and > do the things that will keep him happy (jumping, throwing him in the > air, running up and down hills, etc). > > Not sure if any of this will be of any help at all. Do know that > I'm thinking of you both. Everything becomes so very difficult with > no sleep :-( > Thank you so much Anita, it helps to bounce ideas, suggestions back and > forth and there are points here that are worth thinking of. > > I hope you and your family are settling in into life over here and that > your things arrived okay. We're doing well. Still loving it here :-) Thank you! My best to you also, Anita > > my best wishes to you, > > emily xx > Fondly, > Anita > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2008 Report Share Posted January 20, 2008 Dear Anita, I appreciate very much the points you've made. Will definitely look at the 5Htp and the others one by one. thanks very much emily xx > > > > > > > This is something we have not come to as yet but planning to. What > > exactly would the viral protocol entail? > > There's a file in the file section that might help you. It needs to > be updated again, but it does cover quite a bit about what a viral > protocol can look like. > > > > Norman is on therapeutic doses of B6 and also has additional B > complex > > and magnesium. We've been on TMG for over 8 months at 750mg, > maybe > > moving the dose to later in the day perhaps??? > > Maybe consider increasing it? I know for my son we had him on > pretty high doses of DMG and at that we would get hypractivity. I now > have him at about 1000 mgs a day. > > > We've tried Idebenone, > > would it work the same way as CoQ10? > > > I'm not sure about that. People seem to disagree and I don't know > enough science to have an opinion. > > > . > > > > Anyway, maybe some sort of protocol to produce hyperactivity during > > the day, and another to reduce it at night (5htp as I mentioned > > before has helped here, but also GABA, mag, etc) might help. > > Did try GABA for a short period, when trying to see if it would calm > > seizures down some, but there was no effect on sleep. I have to > say > > though that when he was on tryptophan there seemed to be some very > > subtle changes to his sleep but it was not really obvious. We ran > out > > of the tryptophan, just at the time when starting complex amino > acids > > which included the tryptohan. > > > > What is interesting though is the first amino acid test thru IWDL > > indicated tryptophan levels to be Low at 24 (ref range 23 - 58) and > > 6months later after the amino complex his 2nd amino acid test > > (metametrix) tryptophan levels were improved at 33. > > > > Given these results, would his first level of 24 have contributed > or be > > the cause of the sleep problems? Unfortunately we ran out of the > > complex and our DAN felt it was worth doing a repeat amino test > before > > supplementing further. Maybe with further amino's including > > tryptophan, the sleep problem could resolve, what do you think? We > have > > only just restarted the complex amino's. > > > This is only my really uneducated opinion, but I would use 5HTP as a > seperate supp from an amino complex (although I would also use an > amino complex as they can be VERY helpful for lethargic kids). I > have a feeling that the levels of certain things our kids need might > measure normal, but really they are low (per study). So, I > wouldn't hesitate to go higher with the 5 HTP and see if it helps > sleep. I give ds his about an hour before I hope he'll sleep. > > > > > > I would also consider trying to get any help possible from > absolutely > > any source to engage your child as manically as possible during the > > days, even if it's only for a short burst like one week, just to try > > to break the cycle somewhat. Family, friends, siblings, > > therapists? Since we've pulled Kolja far enough along to make him > > able to laugh, we've seen sleep improvements. I think part of it is > > the releasing of endorphins. He feels better, less anxious, and > > therefore can sleep more soundly. > > > > Very good idea! but not such an easy task over here with the > attitude > > people have towards epilepsy, that together with his extremely poor > > balance, coordination, his size and the fact that he needs someone > to > > actually hold his hand to keep him from crashing to the floor and > just > > being very bad at managing his body makes it a very hard task to > keep > > him up or on his feet. > > > I know. We've only ever found one person who was actually good at > working with Kolja. The rest, even with good intentions, weren't > athletic enough. Some just didn't even have good intentions. > > > > > > > I've often thought that the best therapist I could hire for my son > > would be a hyperactive, overachieving, former Olympic gymnast who > > loves kids. Someone who could expend the incredible energy that it > > takes (beyond normal human capacity, IMO) to engage Kolja all day > and > > do the things that will keep him happy (jumping, throwing him in the > > air, running up and down hills, etc). > > > > Not sure if any of this will be of any help at all. Do know that > > I'm thinking of you both. Everything becomes so very difficult with > > no sleep :-( > > Thank you so much Anita, it helps to bounce ideas, suggestions back > and > > forth and there are points here that are worth thinking of. > > > > I hope you and your family are settling in into life over here and > that > > your things arrived okay. > > We're doing well. Still loving it here :-) Thank you! > > > My best to you also, > > Anita > > > > > > my best wishes to you, > > > > emily xx > > Fondly, > > Anita > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2008 Report Share Posted January 22, 2008 Thank you very much Alison, with all you have on your plate you’ve taken time to write that! when I read this advice I have a gut feeling about hwat will work and what won’t. a few people have said big blankets, etc but Tom really overheats at night and sweats. He also kicks everything off and strips all his clothes off so I don’t think he’d tolerate it. even as a little baby he wouldn’t tolerate a baby sleeping bag. He has the E.S baths and they don’t help. I’ve recently tried the E.S. compress on the thyroid which didn’t help either. BUT I have a real feeling about the lavender oil. Too late for tonight but I’ll get some tomorrow and let you know. I could try activated charcoal. We’ve done it before but I wasn’t looking for a sleep reaction from it so I’ll have another go. thanks again, SARA -----Original Message----- From: Autism-Biomedical-Europe [mailto:Autism-Biomedical-Europe ] On Behalf Of Alison Pope Sent: 22 January 2008 15:05 To: autism-biomedical-europe Subject: sleep Sara Catching up on some back posts here, anything to avoid annual review documents! Our sleep tips, not infallible, and have recently had 3 nights on the trot of 4am waking, and not going back to sleep. 1.Buy a large weighted blanket from ROMPA/Southpaw – expensive but worth every penny. It seems to soothe him 2.Epsom Salts Baths – have even had them in the middle of the night 3.Lavender oil in the bath and sprinkled on the pillow 4.Activated Charcoal – I always reckon that if they are up between 2-4am this is YEAST – Dr Usman once told me to give activated charcoal capsules, and amazingly one night it worked, so I always try to remember to try it. Remember sleep deprivation is torture, and we are all with you, I can’t decide if this is the hardest bit, or that the sleep deprivation is the straw that breaks the camel’s already overloaded back… good luck! Alison Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2008 Report Share Posted February 4, 2008 It is currently taking him quite long to get to sleep – but an hour rather than 4 hours and he is then sleeping til 7 or 8 in the morning. Hope it lasts! SARA >>Me too! Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2008 Report Share Posted February 5, 2008 Hi everyone, Although there are always so many other factors involved with autism (he’s got a cold, some supplements stopped, others increased, etc) I may have found a solution to Tom’s sleeping problem (touching lots of wood). After reading people’s advice on keeping the child warm, weighted blankets, etc it got me thinking about Tom and to cut a long story short I now do the complete opposite - put him to bed without any pyjamas – just a nappy - and with the window wide open (so the room is icy) he still kicks the duvet off and his sleep is very good. It is currently taking him quite long to get to sleep – but an hour rather than 4 hours and he is then sleeping til 7 or 8 in the morning. Hope it lasts! SARA Quote Link to comment Share on other sites More sharing options...
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