Guest guest Posted August 24, 2009 Report Share Posted August 24, 2009 Dear Steph We have such a range of seizure signs and eyes ticking is one too. We know that for us and a lot of other epileptics, gut and brain are so very closely linked...If Tash has food that is not good for her withing 24 hours she has more seizure activity too. Whilst having SPECT may give you information, am I right that they use a radioactive trace to do this? We have stayed way clear of any nuclear medicine.. to examine an already fragile brain- The next thing is that even if they tell you there is seizure activity- have they the treatments and competence to do anything helpful? The main AEDs are so very very toxic to the liver.. and we only went that route when threatened with legal action by hospital!! We have just learned a new massage technique - very gentle which seems to bring Tash out of seizures within a few seconds.. It forces blood to the brain in a vey gentle way... Best wishes Tracey On Mon, Aug 24, 2009 at 9:48 AM, stephaniesirr <mark.grabiec@...> wrote: I really, really appreciate everyone's thoughts and suggestions. God knows what Tom would do without people here. I'll just pay the bit of my tax that goes to the NHS to ABE from now on. Yet more questions, sorry!! Does anyone know what eye flicking means? He's been doing this thing where he flicks his eyes incredibly quickly from side to side, not a wide flick, like a tiny movement that I couldn't do if I tried. Might that be seizure related? He's also asking for the light to be switched off quite a lot(thank god that's one of his phrases) but not in panicky pained way, more like an order. the last two nights he's woken early in pain and beaten himself up - like 3am or 4am. this mornings was noticably less severe than the previous night which was never ending and hellish. This was more half hearted but he goes rigid (pain?), wakes up, beats up. Then when he's fine he's just delightful, alert etc. (When it's 4am and we think it's delightful that he's awake you get a sense of how bad he is when he's in SIB mode) He's fairly cleared out at present (maintenance dose of 5 sachets of movicol a day) - we're not getting anything like as much undigested food either (sorry, but you know how it is). He's eating more veg than usual but well cooked and non allergic things like courgette and cucumber. The eye flicking has been going on a while I think, but we've never really clocked it. We never did get a proper test for epilepsy - I know he has gastritis, reflux and a tendency to impaction but that doens't mean that he's not having monster headaches and seizures too of course. Has anyone managed a conclusive test for seizures. What about a SPECT scan? Pain killers do seem to work but you never know whether what ever caused the pain has passed or it's the pain killer.Good idea about clear fluids Caroline - bizarrely I'd say his appetite was rather better at the moment. Usually he eats like a bird, at the moment he's asking for food a lot, and good food, not just things he can't have. Bit like twilight zone when NHS tells us " you don't need to go private, we can help " and then disappear! Steph x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2009 Report Share Posted August 24, 2009 <<o asking for the light to be switched off quite a lot>> He needs Vitamin A.......or Omega 3s specially DHA (DHA comprises 30% of the retina.) stephaniesirr schrieb: > > > I really, really appreciate everyone's thoughts and suggestions. God > knows what Tom would do without people here. I'll just pay the bit of > my tax that goes to the NHS to ABE from now on. > > Yet more questions, sorry!! Does anyone know what eye flicking means? > He's been doing this thing where he flicks his eyes incredibly quickly > from side to side, not a wide flick, like a tiny movement that I > couldn't do if I tried. Might that be seizure related? He's also > asking for the light to be switched off quite a lot(thank god that's > one of his phrases) but not in panicky pained way, more like an order. > the last two nights he's woken early in pain and beaten himself up - > like 3am or 4am. this mornings was noticably less severe than the > previous night which was never ending and hellish. This was more half > hearted but he goes rigid (pain?), wakes up, beats up. Then when he's > fine he's just delightful, alert etc. (When it's 4am and we think it's > delightful that he's awake you get a sense of how bad he is when he's > in SIB mode) He's fairly cleared out at present (maintenance dose of 5 > sachets of movicol a day) - we're not getting anything like as much > undigested food either (sorry, but you know how it is). He's eating > more veg than usual but well cooked and non allergic things like > courgette and cucumber. The eye flicking has been going on a while I > think, but we've never really clocked it. > > We never did get a proper test for epilepsy - I know he has gastritis, > reflux and a tendency to impaction but that doens't mean that he's not > having monster headaches and seizures too of course. Has anyone > managed a conclusive test for seizures. What about a SPECT scan? > > Pain killers do seem to work but you never know whether what ever > caused the pain has passed or it's the pain killer. > > Good idea about clear fluids Caroline - bizarrely I'd say his appetite > was rather better at the moment. Usually he eats like a bird, at the > moment he's asking for food a lot, and good food, not just things he > can't have. Bit like twilight zone when NHS tells us " you don't need > to go private, we can help " and then disappear! > > Steph x > > > ------------------------------------------------------------------------ > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.392 / Virus Database: 270.13.65/2322 - Release Date: 08/23/09 18:03:00 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2009 Report Share Posted August 24, 2009 --- Hi Steph, It sounds to me like nystagmus, an involountary eye movement. Jasmine has this too. Sometimes her eyes look like they roll from side to side in a slow flicker, and sometimes it is very rapid. Jasmine has several eye conditions and is just part of that, or so I am told. Personally, I think there is more to it. Jasmine is seeing an endocrinologist on Wednesday, for various tests. These are for Coeliac, a check on her growth hormones and a test for D-Lactic acidosis, which is at my request (after I lodged a verbal complaint with the Directorate of the hospital). I am not sure if the bloods will be done on Wednesday, or whether this is an initial appointment and the bloods done at a later stage. Nystagmus is reported in D-Lactic acidosis. I am not sure whether you have read Breaking the Vicious Cycle, which is the basis of SCD, but Elaine Gottchall talks about d-lactic in short bowel patients, where it is most likely seen. It occurs in people with a shortened bowel, and happens when carbohydrates are fermented by certain bacteria, as the bowel's digesting capacity is reduced. It causes neurological changes, including aggression, slurred speech and staggering gait, and lasts for 70 hours or thereabouts. I am sure Jasmine has this, although I have been repeatedly told that she does not. When she was tube feed this change occured each time I tried to feed her oral carbs, and as long as she ate no more, this behaviour lasted 3 days, just like the acidosis. Have you tried limiting carbs for a few days? If tolerated you could try plain chicken soup, scrambled eggs, gluten free sausages etc, to see whether the nystagmus and SIB improve. If he is on probiotics, maybe stop or reduce them, as this type of acidosis has been known to be provoked by probiotics. Not sure if this is helpful to you in any way, I will however let you all know how the testing goes in due course. Hope you see improvements soon. Best Wishes, Glynis In Autism Treatment , " stephaniesirr " <mark.grabiec@...> wrote: > > I really, really appreciate everyone's thoughts and suggestions. God knows what Tom would do without people here. I'll just pay the bit of my tax that goes to the NHS to ABE from now on. > > Yet more questions, sorry!! Does anyone know what eye flicking means? He's been doing this thing where he flicks his eyes incredibly quickly from side to side, not a wide flick, like a tiny movement that I couldn't do if I tried. Might that be seizure related? He's also asking for the light to be switched off quite a lot(thank god that's one of his phrases) but not in panicky pained way, more like an order. the last two nights he's woken early in pain and beaten himself up - like 3am or 4am. this mornings was noticably less severe than the previous night which was never ending and hellish. This was more half hearted but he goes rigid (pain?), wakes up, beats up. Then when he's fine he's just delightful, alert etc. (When it's 4am and we think it's delightful that he's awake you get a sense of how bad he is when he's in SIB mode) He's fairly cleared out at present (maintenance dose of 5 sachets of movicol a day) - we're not getting anything like as much undigested food either (sorry, but you know how it is). He's eating more veg than usual but well cooked and non allergic things like courgette and cucumber. The eye flicking has been going on a while I think, but we've never really clocked it. > > We never did get a proper test for epilepsy - I know he has gastritis, reflux and a tendency to impaction but that doens't mean that he's not having monster headaches and seizures too of course. Has anyone managed a conclusive test for seizures. What about a SPECT scan? > > Pain killers do seem to work but you never know whether what ever caused the pain has passed or it's the pain killer. > > Good idea about clear fluids Caroline - bizarrely I'd say his appetite was rather better at the moment. Usually he eats like a bird, at the moment he's asking for food a lot, and good food, not just things he can't have. Bit like twilight zone when NHS tells us " you don't need to go private, we can help " and then disappear! > > Steph x > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2009 Report Share Posted August 24, 2009 Steph Just a thought but could it be migraines. I had really horrific migraines as a child, up to 5 a week. The light is a killer. I would vomit too with pain it was excruciating, grew out of them thankfully. I think having him checked for seizures is so important, but know you will get loads of help on here with that. If you give him painkillers (like Sal said) how is he? I guess maybe by the time they would work it would be maybe over, it does sound like some kind of episode doesnt it. Oh God I hope you get some answers, you must be sick with worry. I dont know what to suggest except the doctors must do something its so terrible for you all. Are you logging it all because maybe that would be helpful. How about maybe going to the GP and just chatting about how terrible this is for Tom and you all and seeing what he can suggest. They must really take him into hospital and try to figure this out as its simply just so unfair for all of you. Hugs Caz xx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2009 Report Share Posted August 24, 2009 Caroline, Migraines are something to do with serotonin, I think connected to elevated serotonin It's well know with neurologists.....at least the bright ones:-)) Serotonin is regulated in part by thyroid so I think the answer may lay with thyroid function . carolinetraa2000 schrieb: > > > Steph > > Just a thought but could it be migraines. I had really horrific > migraines as a child, up to 5 a week. The light is a killer. I would > vomit too with pain it was excruciating, grew out of them thankfully. > > I think having him checked for seizures is so important, but know you > will get loads of help on here with that. > > If you give him painkillers (like Sal said) how is he? I guess maybe > by the time they would work it would be maybe over, it does sound like > some kind of episode doesnt it. > > Oh God I hope you get some answers, you must be sick with worry. I > dont know what to suggest except the doctors must do something its so > terrible for you all. Are you logging it all because maybe that would > be helpful. How about maybe going to the GP and just chatting about > how terrible this is for Tom and you all and seeing what he can > suggest. They must really take him into hospital and try to figure > this out as its simply just so unfair for all of you. > > Hugs Caz > xx > > > ------------------------------------------------------------------------ > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.392 / Virus Database: 270.13.65/2322 - Release Date: 08/23/09 18:03:00 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2009 Report Share Posted August 24, 2009 Does that mean that 5HTP can cause migraines? Tom's thyroid is iffy - but his test is sort of odd. too much T3 I think, I'll dig it out. NHS is rerunning his thyroid test (dont' hold your breath) Tom is taking 5HTP before bed. ?? > > Caroline, Migraines are something to do with serotonin, I think > connected to elevated serotonin It's well know with neurologists.....at > least the bright ones:-)) > > Serotonin is regulated in part by thyroid so I think the answer may lay > with thyroid function . > > > > carolinetraa2000 schrieb: > > > > > > Steph > > > > Just a thought but could it be migraines. I had really horrific > > migraines as a child, up to 5 a week. The light is a killer. I would > > vomit too with pain it was excruciating, grew out of them thankfully. > > > > I think having him checked for seizures is so important, but know you > > will get loads of help on here with that. > > > > If you give him painkillers (like Sal said) how is he? I guess maybe > > by the time they would work it would be maybe over, it does sound like > > some kind of episode doesnt it. > > > > Oh God I hope you get some answers, you must be sick with worry. I > > dont know what to suggest except the doctors must do something its so > > terrible for you all. Are you logging it all because maybe that would > > be helpful. How about maybe going to the GP and just chatting about > > how terrible this is for Tom and you all and seeing what he can > > suggest. They must really take him into hospital and try to figure > > this out as its simply just so unfair for all of you. > > > > Hugs Caz > > xx > > > > > > ------------------------------------------------------------------------ > > > > > > No virus found in this incoming message. > > Checked by AVG - www.avg.com > > Version: 8.5.392 / Virus Database: 270.13.65/2322 - Release Date: 08/23/09 18:03:00 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2009 Report Share Posted August 24, 2009 Oh, I just went jogging through a load of stuff on thyroid and found elevated T3 due to........heck I can't remember... It'll come to me. I'll let you know. Yes 5HTP will load him up if serotonin already too high. It's better to fix at source and I think the thyroid is where to start...... stephaniesirr schrieb: > > > Does that mean that 5HTP can cause migraines? Tom's thyroid is iffy - > but his test is sort of odd. too much T3 I think, I'll dig it out. NHS > is rerunning his thyroid test (dont' hold your breath) > > Tom is taking 5HTP before bed. ?? > > > > > > Caroline, Migraines are something to do with serotonin, I think > > connected to elevated serotonin It's well know with neurologists. > ....at > > least the bright ones:-)) > > > > Serotonin is regulated in part by thyroid so I think the answer may lay > > with thyroid function . > > > > > > > > carolinetraa2000 schrieb: > > > > > > > > > Steph > > > > > > Just a thought but could it be migraines. I had really horrific > > > migraines as a child, up to 5 a week. The light is a killer. I would > > > vomit too with pain it was excruciating, grew out of them thankfully. > > > > > > I think having him checked for seizures is so important, but know you > > > will get loads of help on here with that. > > > > > > If you give him painkillers (like Sal said) how is he? I guess maybe > > > by the time they would work it would be maybe over, it does sound > like > > > some kind of episode doesnt it. > > > > > > Oh God I hope you get some answers, you must be sick with worry. I > > > dont know what to suggest except the doctors must do something its so > > > terrible for you all. Are you logging it all because maybe that would > > > be helpful. How about maybe going to the GP and just chatting about > > > how terrible this is for Tom and you all and seeing what he can > > > suggest. They must really take him into hospital and try to figure > > > this out as its simply just so unfair for all of you. > > > > > > Hugs Caz > > > xx > > > > > > > > > ------------ --------- --------- --------- --------- --------- - > > > > > > > > > No virus found in this incoming message. > > > Checked by AVG - www.avg.com > > > Version: 8.5.392 / Virus Database: 270.13.65/2322 - Release Date: > 08/23/09 18:03:00 > > > > > > > > > > > ------------------------------------------------------------------------ > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.392 / Virus Database: 270.13.65/2322 - Release Date: 08/23/09 18:03:00 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2009 Report Share Posted August 24, 2009 some of my migraines have food/allergic triggers. Mainly used to be triggered by gluten, or processed wheat. Can also be other foods. Natasa Caroline, Migraines are something to do with serotonin, I think connected to elevated serotonin It's well know with neurologists.....at least the bright ones:-)) Serotonin is regulated in part by thyroid so I think the answer may lay with thyroid function . carolinetraa2000 schrieb: > > > Steph > > Just a thought but could it be migraines. I had really horrific > migraines as a child, up to 5 a week. The light is a killer. I would > vomit too with pain it was excruciating, grew out of them thankfully. > > I think having him checked for seizures is so important, but know you > will get loads of help on here with that. > > If you give him painkillers (like Sal said) how is he? I guess maybe > by the time they would work it would be maybe over, it does sound like > some kind of episode doesnt it. > > Oh God I hope you get some answers, you must be sick with worry. I > dont know what to suggest except the doctors must do something its so > terrible for you all. Are you logging it all because maybe that would > be helpful. How about maybe going to the GP and just chatting about > how terrible this is for Tom and you all and seeing what he can > suggest. They must really take him into hospital and try to figure > this out as its simply just so unfair for all of you. > > Hugs Caz > xx > > > ---------------------------------------------------------- > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.392 / Virus Database: 270.13.65/2322 - Release Date: 08/23/09 18:03:00 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2009 Report Share Posted August 24, 2009 - Hi Steph, I believe some fermented foods such as aged cheese and foods high in amines can trigger migraines. I think this maybe the reason Kate has never tolerated yoghurt . I've been looking more into sensory stuff. Dr Kaplans site talks about abnormal eyemovements and visual problems. Sorry I can't seem to find the link I was reading last night , but he talks about various problems with ambient vision ,strabismus and nystagmus, tunnel vision etc. Sharon x -- In Autism Treatment , Neno/Natasa <neno@...> wrote: > > > some of my migraines have food/allergic triggers. Mainly used to be triggered > > by gluten, or processed wheat. Can also be other foods. > > > > Natasa > > > > > > > > > > Caroline, Migraines are something to do with serotonin, I think > > connected to elevated serotonin It's well know with neurologists.....at > > least the bright ones:-)) > > > > Serotonin is regulated in part by thyroid so I think the answer may lay > > with thyroid function . > > > > > > > > carolinetraa2000 schrieb: > >> > > >> > > >> > Steph > >> > > >> > Just a thought but could it be migraines. I had really horrific > >> > migraines as a child, up to 5 a week. The light is a killer. I would > >> > vomit too with pain it was excruciating, grew out of them thankfully. > >> > > >> > I think having him checked for seizures is so important, but know you > >> > will get loads of help on here with that. > >> > > >> > If you give him painkillers (like Sal said) how is he? I guess maybe > >> > by the time they would work it would be maybe over, it does sound like > >> > some kind of episode doesnt it. > >> > > >> > Oh God I hope you get some answers, you must be sick with worry. I > >> > dont know what to suggest except the doctors must do something its so > >> > terrible for you all. Are you logging it all because maybe that would > >> > be helpful. How about maybe going to the GP and just chatting about > >> > how terrible this is for Tom and you all and seeing what he can > >> > suggest. They must really take him into hospital and try to figure > >> > this out as its simply just so unfair for all of you. > >> > > >> > Hugs Caz > >> > xx > >> > > >> > > >> > ---------------------------------------------------------- > >> > > >> > > >> > No virus found in this incoming message. > >> > Checked by AVG - www.avg.com > >> > Version: 8.5.392 / Virus Database: 270.13.65/2322 - Release Date: 08/23/09 > >> 18:03:00 > >> > > >> > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2009 Report Share Posted August 24, 2009 In a message dated 24/08/2009 17:56:42 GMT Daylight Time, moppett1@... writes: Gotta run to see my poor Dad who is in the hospital again . They gave him a bad drug....a male castration chemical implnated in his abdomen and now has to run it's 3 month course. it can't be taken out... >>Zoladex is Lupron, being given to ASD kids by the Geiers................hope he is better soon Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2009 Report Share Posted August 24, 2009 Yes and thanks for the link to the site. Tom likes to eat cheese but doesn't get much of it. I'd say he craved cheese actually - given the chance he'd polish off a block of it. > > > > > some of my migraines have food/allergic triggers. Mainly used to be triggered > > > by gluten, or processed wheat. Can also be other foods. > > > > > > Natasa > > > > > > > > > > > > > > > Caroline, Migraines are something to do with serotonin, I think > > > connected to elevated serotonin It's well know with neurologists.....at > > > least the bright ones:-)) > > > > > > Serotonin is regulated in part by thyroid so I think the answer may lay > > > with thyroid function . > > > > > > > > > > > > carolinetraa2000 schrieb: > > >> > > > >> > > > >> > Steph > > >> > > > >> > Just a thought but could it be migraines. I had really horrific > > >> > migraines as a child, up to 5 a week. The light is a killer. I would > > >> > vomit too with pain it was excruciating, grew out of them thankfully. > > >> > > > >> > I think having him checked for seizures is so important, but know you > > >> > will get loads of help on here with that. > > >> > > > >> > If you give him painkillers (like Sal said) how is he? I guess maybe > > >> > by the time they would work it would be maybe over, it does sound like > > >> > some kind of episode doesnt it. > > >> > > > >> > Oh God I hope you get some answers, you must be sick with worry. I > > >> > dont know what to suggest except the doctors must do something its so > > >> > terrible for you all. Are you logging it all because maybe that would > > >> > be helpful. How about maybe going to the GP and just chatting about > > >> > how terrible this is for Tom and you all and seeing what he can > > >> > suggest. They must really take him into hospital and try to figure > > >> > this out as its simply just so unfair for all of you. > > >> > > > >> > Hugs Caz > > >> > xx > > >> > > > >> > > > >> > ---------------------------------------------------------- > > >> > > > >> > > > >> > No virus found in this incoming message. > > >> > Checked by AVG - www.avg.com > > >> > Version: 8.5.392 / Virus Database: 270.13.65/2322 - Release Date: 08/23/09 > > >> 18:03:00 > > >> > > > >> > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2009 Report Share Posted August 24, 2009 Sounds like its really worth checking out the thyroid stuff again Steph. I never knew this about the migraines , thanks for that. I was never able to connect foodstuffs with mine although I know the cheese, chocolate, red wine thing (even I wasnt on the wine quite so young mind you!!) Steph have you ever had him off supplements altogether for a longish period say 2-4 weeks? Movicol definitely gives tummy cramps, sad that I didnt know for a good 5 years, but saying that she has been OK on it too so its very difficult to know what to do. It just seems something is so badly wrong that, is it the bowel, something you really dont know about, brain inflammation possibly, I am not sure what is going on but I sure hope he gets answers, did they suggest a bowel x-ray yesterday at the hospital? I know we have had a few times when everything has been working OK with s bowel and its actually been pretty badly overloaded. Did someone say have his teeth checked? Its all the obvious things but it must be so awful for our kids not to tell us what it is. It makes me feel so sad and hearing about Tom is just dreadful, poor wee mite. Sorry not helpful but just hoping you get some help. Luv Caroline xx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2009 Report Share Posted August 24, 2009 The epsom salts (mag sulph) in bath theoretically will help to degrade the serotonin if it is elevated. High serotonin in the gut could cause a kind of migraine too, I think. Maybe that's what tummy aches are all about....... Gotta run to see my poor Dad who is in the hospital again . They gave him a bad drug....a male castration chemical implnated in his abdomen and now has to run it's 3 month course. it can't be taken out... carolinetraa2000 schrieb: > > > Sounds like its really worth checking out the thyroid stuff again > Steph. I never knew this about the migraines , thanks for that. I > was never able to connect foodstuffs with mine although I know the > cheese, chocolate, red wine thing (even I wasnt on the wine quite so > young mind you!!) > Steph have you ever had him off supplements altogether for a longish > period say 2-4 weeks? Movicol definitely gives tummy cramps, > sad that I didnt know for a good 5 years, but saying that she has been > OK on it too so its very difficult to know what to do. > It just seems something is so badly wrong that, is it the bowel, > something you really dont know about, brain inflammation possibly, I > am not sure what is going on but I sure hope he gets answers, did they > suggest a bowel x-ray yesterday at the hospital? I know we have had a > few times when everything has been working OK with s bowel and > its actually been pretty badly overloaded. > Did someone say have his teeth checked? Its all the obvious things but > it must be so awful for our kids not to tell us what it is. It makes > me feel so sad and hearing about Tom is just dreadful, poor wee mite. > Sorry not helpful but just hoping you get some help. > Luv Caroline > xx > > > ------------------------------------------------------------------------ > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.392 / Virus Database: 270.13.65/2322 - Release Date: 08/23/09 18:03:00 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2009 Report Share Posted August 24, 2009 Hi, My name is Sharon and I am new to the group. I have been following the threads for a few days and I think that the diet my son has been on for a year would be helpful to many of you. My son was diagnosed on the spectrum a year ago and shortly thereafter we started Sara's diet http://www.saras-autism-diet.freeservers.com/. We were experiencing classic autism symptoms, including pica and other sensory issues, and many many others. By chance I found the information on this diet and began this before eliminating gluten and casein. I tested the generic diet provided on this web site, and saw improvements that amazed me. I then purchased a consult from Dr. Desorger who discovered this lutein free diet. Here we are a year later, and 95% of my son's symptoms are gone. He was recently tested for pre-school disabled for 3 year olds and the only reason he is eligible is because we have a diagnosis on paper. All of the tests including speech came back within the limits of normal development. It is amazing how far we have come in a year. His sensory issues are gone, he has become a little chatterbox, and so many other issues seemed to resolve themselves. We went through several periods of regression, followed by leaps in development. I know that the gluten/casein free diets and the SCD diets are challenging, and no one wants to deal with further restrictions. But it is not as impossible as it sounds. I was recently contacted by my son's service coordinator to see if I could help another family with the diet. This in itself says a lot, because this service coordinator did not put too much stock into diet prior to meeting my son. After watching the progress and development of my son over the last year, she has opened herself up to the possibilities of what diet and nutrition can do for our ASD kids. I hope that at least one person in this group explores the possibilities of Sara's diet. Here is some more info if anyone is interested. http://www.saras-autism-diet.freeservers.com/Exile/III-5.html. We wouldn't be where we are today if it wasn't for the help provided by Dr. Desorger. Sharon S. From: carolinetraa2000 <CarolineTraa@...>Autism Treatment Sent: Monday, August 24, 2009 12:30:16 PMSubject: Re: Sorry, Tom again Sounds like its really worth checking out the thyroid stuff again Steph. I never knew this about the migraines , thanks for that. I was never able to connect foodstuffs with mine although I know the cheese, chocolate, red wine thing (even I wasnt on the wine quite so young mind you!!)Steph have you ever had him off supplements altogether for a longish period say 2-4 weeks? Movicol definitely gives tummy cramps, sad that I didnt know for a good 5 years, but saying that she has been OK on it too so its very difficult to know what to do.It just seems something is so badly wrong that, is it the bowel, something you really dont know about, brain inflammation possibly, I am not sure what is going on but I sure hope he gets answers, did they suggest a bowel x-ray yesterday at the hospital? I know we have had a few times when everything has been working OK with s bowel and its actually been pretty badly overloaded. Did someone say have his teeth checked? Its all the obvious things but it must be so awful for our kids not to tell us what it is. It makes me feel so sad and hearing about Tom is just dreadful, poor wee mite. Sorry not helpful but just hoping you get some help.Luv Carolinexx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2009 Report Share Posted August 24, 2009 Hope your dad is OK , thinking of you. Luv caroline xx > Gotta run to see my poor Dad who is in the hospital again . They gave > him a bad drug....a male castration chemical implnated in his abdomen > and now has to run it's 3 month course. it can't be taken out... > > > > >>Zoladex is Lupron, being given to ASD kids by the > Geiers................hope he is better soon > > Mandi x > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2009 Report Share Posted August 24, 2009 Are you sure this is the same as Lupron? The side effects of zoladex are disturbing! Arterial stiffness osteoporosis Hyperinsulemia glucose metabolism disturbance Mum231ASD@... schrieb: > > > In a message dated 24/08/2009 17:56:42 GMT Daylight Time, > moppett1@... writes: > > Gotta run to see my poor Dad who is in the hospital again . They gave > him a bad drug....a male castration chemical implnated in his abdomen > and now has to run it's 3 month course. it can't be taken out... > > >>Zoladex is Lupron, being given to ASD kids by the > Geiers................hope he is better soon > > Mandi x > > > ------------------------------------------------------------------------ > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.392 / Virus Database: 270.13.65/2324 - Release Date: 08/24/09 12:55:00 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2009 Report Share Posted August 24, 2009 Thanks for your good wishes. Forgot to say that:-)) Mum231ASD@... schrieb: > > > In a message dated 24/08/2009 17:56:42 GMT Daylight Time, > moppett1@... writes: > > Gotta run to see my poor Dad who is in the hospital again . They gave > him a bad drug....a male castration chemical implnated in his abdomen > and now has to run it's 3 month course. it can't be taken out... > > >>Zoladex is Lupron, being given to ASD kids by the > Geiers................hope he is better soon > > Mandi x > > > ------------------------------------------------------------------------ > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.392 / Virus Database: 270.13.65/2324 - Release Date: 08/24/09 12:55:00 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2009 Report Share Posted August 24, 2009 Och it's so frustrating. I kept telling my mum, no more drugs. before I know it, they've got him on two more powerful drugs, both NHS approved. the nurse has asked us to review resussitation orders:-(( carolinetraa2000 schrieb: > > > Hope your dad is OK , thinking of you. > Luv caroline > xx > > > Gotta run to see my poor Dad who is in the hospital again . They gave > > him a bad drug....a male castration chemical implnated in his abdomen > > and now has to run it's 3 month course. it can't be taken out... > > > > > > > > >>Zoladex is Lupron, being given to ASD kids by the > > Geiers................hope he is better soon > > > > Mandi x > > > > > ------------------------------------------------------------------------ > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.392 / Virus Database: 270.13.65/2324 - Release Date: 08/24/09 12:55:00 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2009 Report Share Posted August 25, 2009 Wow, how awful. Hope he's ok. thanks for the advice - need to rerunhis thyroid test I think. So - perhaps he should be back on Iodoral? > > The epsom salts (mag sulph) in bath theoretically will help to degrade > the serotonin if it is elevated. High serotonin in the gut could cause a > kind of migraine too, I think. Maybe that's what tummy aches are all > about....... > > Gotta run to see my poor Dad who is in the hospital again . They gave > him a bad drug....a male castration chemical implnated in his abdomen > and now has to run it's 3 month course. it can't be taken out... > > > > carolinetraa2000 schrieb: > > > > > > Sounds like its really worth checking out the thyroid stuff again > > Steph. I never knew this about the migraines , thanks for that. I > > was never able to connect foodstuffs with mine although I know the > > cheese, chocolate, red wine thing (even I wasnt on the wine quite so > > young mind you!!) > > Steph have you ever had him off supplements altogether for a longish > > period say 2-4 weeks? Movicol definitely gives tummy cramps, > > sad that I didnt know for a good 5 years, but saying that she has been > > OK on it too so its very difficult to know what to do. > > It just seems something is so badly wrong that, is it the bowel, > > something you really dont know about, brain inflammation possibly, I > > am not sure what is going on but I sure hope he gets answers, did they > > suggest a bowel x-ray yesterday at the hospital? I know we have had a > > few times when everything has been working OK with s bowel and > > its actually been pretty badly overloaded. > > Did someone say have his teeth checked? Its all the obvious things but > > it must be so awful for our kids not to tell us what it is. It makes > > me feel so sad and hearing about Tom is just dreadful, poor wee mite. > > Sorry not helpful but just hoping you get some help. > > Luv Caroline > > xx > > > > > > ------------------------------------------------------------------------ > > > > > > No virus found in this incoming message. > > Checked by AVG - www.avg.com > > Version: 8.5.392 / Virus Database: 270.13.65/2322 - Release Date: 08/23/09 18:03:00 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2009 Report Share Posted August 25, 2009 Wow, how awful. Hope he's ok. thanks for the advice - need to rerunhis thyroid test I think. So - perhaps he should be back on Iodoral? > > The epsom salts (mag sulph) in bath theoretically will help to degrade > the serotonin if it is elevated. High serotonin in the gut could cause a > kind of migraine too, I think. Maybe that's what tummy aches are all > about....... > > Gotta run to see my poor Dad who is in the hospital again . They gave > him a bad drug....a male castration chemical implnated in his abdomen > and now has to run it's 3 month course. it can't be taken out... > > > > carolinetraa2000 schrieb: > > > > > > Sounds like its really worth checking out the thyroid stuff again > > Steph. I never knew this about the migraines , thanks for that. I > > was never able to connect foodstuffs with mine although I know the > > cheese, chocolate, red wine thing (even I wasnt on the wine quite so > > young mind you!!) > > Steph have you ever had him off supplements altogether for a longish > > period say 2-4 weeks? Movicol definitely gives tummy cramps, > > sad that I didnt know for a good 5 years, but saying that she has been > > OK on it too so its very difficult to know what to do. > > It just seems something is so badly wrong that, is it the bowel, > > something you really dont know about, brain inflammation possibly, I > > am not sure what is going on but I sure hope he gets answers, did they > > suggest a bowel x-ray yesterday at the hospital? I know we have had a > > few times when everything has been working OK with s bowel and > > its actually been pretty badly overloaded. > > Did someone say have his teeth checked? Its all the obvious things but > > it must be so awful for our kids not to tell us what it is. It makes > > me feel so sad and hearing about Tom is just dreadful, poor wee mite. > > Sorry not helpful but just hoping you get some help. > > Luv Caroline > > xx > > > > > > ------------------------------------------------------------------------ > > > > > > No virus found in this incoming message. > > Checked by AVG - www.avg.com > > Version: 8.5.392 / Virus Database: 270.13.65/2322 - Release Date: 08/23/09 18:03:00 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2009 Report Share Posted August 25, 2009 > Here we are a year later, and 95% of my son's symptoms are gone. He was recently tested for pre-school disabled for 3 year olds and the only reason he is eligible is because we have a diagnosis on paper. Sharon - I am so happy for you. Panguluri's son Ravi also recovered using Sara's Diet: " I just wanted to give a short update about our son, Ravi, now almost 5 yrs old. We (Ravi) began " Sara's Diet " in July of 2005, when he was about 2 yrs, 9 months old. He was diagnosed with " classical autism " also in July 2005. The diagnosis was based on his Autism Diagnostic Observation Schedule (ADOS) test score and presenting characteristics. As of August of this year (2007) he is no longer autistic (not even pervasive developmental disability-nos, the lesser diagnosis on the autistic spectrum.) He had a battery of phychological and language tests and shows only " mildly impaired social/pragmatic skills. " Panguluri see: http://www.saras-autism-diet.freeservers.com/WCAP/testimonials.html Max Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2009 Report Share Posted August 25, 2009 > Here we are a year later, and 95% of my son's symptoms are gone. He was recently tested for pre-school disabled for 3 year olds and the only reason he is eligible is because we have a diagnosis on paper. Sharon - I am so happy for you. Panguluri's son Ravi also recovered using Sara's Diet: " I just wanted to give a short update about our son, Ravi, now almost 5 yrs old. We (Ravi) began " Sara's Diet " in July of 2005, when he was about 2 yrs, 9 months old. He was diagnosed with " classical autism " also in July 2005. The diagnosis was based on his Autism Diagnostic Observation Schedule (ADOS) test score and presenting characteristics. As of August of this year (2007) he is no longer autistic (not even pervasive developmental disability-nos, the lesser diagnosis on the autistic spectrum.) He had a battery of phychological and language tests and shows only " mildly impaired social/pragmatic skills. " Panguluri see: http://www.saras-autism-diet.freeservers.com/WCAP/testimonials.html Max Quote Link to comment Share on other sites More sharing options...
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