Guest guest Posted September 15, 2011 Report Share Posted September 15, 2011 Has anyone had this done and if so was it useful?ZahraSent from my iPhone Dr Goyal has given us a whole list of things to research/ try/ think about so will ask/ post about each one individually. I hope that's ok. Has anyone got any experience with autonomic profiling? Thanks, Sara x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2011 Report Share Posted September 16, 2011 dr Goyal seems to want to do this test to check the oxygen and heart rate levels of all children especially those doing anti virals. I found it useful as we realised that zachary did not need hBOT and that his levels were relatively ok, and as Breakspear say, children vary enormously, the whole test took us about half an hour, but you do need your child to sit still for accurate results, Isobel > > > Dr Goyal has given us a whole list of things to research/ try/ think > > about so will ask/ post about each one individually. I hope that's ok. > > Has anyone got any experience with autonomic profiling? > > Thanks, > > Sara x > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2011 Report Share Posted December 23, 2011 Hi, So we finally had this done. The results almost made me burst into tears. Noor's oxygen levels were extremely low - 7 instead of a normal 70. Dr. Goyal said he was amazed how she was able to learn anything with these sort of levels. We are now using an oxygen concentrator for 8 weeks (2-3 hours a day). Dr. Goyal says that he is confident that this will make a huge difference to Noor's cognitive function. He suspects viral toxicity so looks like we're going to have to start with anti virals. He also feels that her partial epilepsy is a direct result of the viral toxicity. Fortunately I haven't seen a seizure in 8 months (we were having 4 a month - very brief seizures involving twitching of the right cheek) Noor's case has baffled so many people as she doesn't present with typical symtoms and behaviours. So far I have seen subtle improvements in certain areas - no WOWs. Day 3 of taking oxygen and I'm really pleased that she is keeping the mask on without much of a struggle, I'm really proud of her, Zahra > > I didn't realise they had to wear a mask at night. Is it all night long? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2012 Report Share Posted January 28, 2012 Hi Everyone,As promised I thought I should provide an update on Noor's progress with the oxygenator following on from the Autonomic Baseline test at the end of December.So far, so good. We're getting a lot more "social conversation" and she's definitely more switched on. She's also being a little more defiant and has more of an opinion (she was already doing this but it's a little more pronounced now). Definitely an improvement all round.Sometimes Noor tends to just stare into space and we're definitely seeing less of that. So we will be returning the oxygenator to the Breakspear in the second week of February and we do intend to repeat the test in the next 4-6 weeks. I, for one would like to know whether her oxygen levels are up as they were frighteningly low (we had a reading of 7). I have got mitochondrial support in place - 30 mg of Coenzyme Q10 twice a day. Noor has been taking this for over a year now.Is this dosage too low?It's really strange though as she never seems to be tired! You'd think that a child with such low oxygen levels would be in a state of permanent fatigue!Noor's neurological screen was inconclusive, so Dr Goyal's not happy to start her on anti virals just yet. We were trying to understand the underlying cause for her low levels of oxygen and we both suspected viruses. Not to say that she doesn't!He suspects clostridia for some reason and has asked me to get a full organic acid test done.If anyone has any thoughts, I would be most grateful for your input.Thank you so much.Will keep you posted.Zahra To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe > Cc: "<autism-biomedical-europe >" <autism-biomedical-europe > Sent: Friday, 23 December 2011, 18:30 Subject: Re: Re: autonomic profiling Hi ,Wonderful news about Harry's speech .I will definitely keep you in the loop about Noor's progresswith the oxygenator. She's a really passive child who tends tocooperate when asked to do something which really helps.Merry Christmas to you and your family and to all you wonderfulABE peeps . Here's hoping and praying that 2012 proves to bea fantastic year for all of us, especially for our kids!ZahraSent from my iPhone Hi Zahra Gosh that was extremely low, we are having this test done in March when we see Dr Goyal, Harry is like Noor as he has had no major wows just steady improvements, although i do feel that most of Harry's issues point to mercury and viruses and i have completed 73 rounds of AC chelation and prior to that 16 rounds of TD-DMPS but i think i have a few more years of doing this to see he mercury levels come down (as they were soooo high) Im really intersted to hear how Noor levels improve with the oxygen concentrator so please report back, great news that she is keeping the mask on, maybe she is starting to feel the benefits of the oxygen now so doesnt mind so much, i have heard with the portable oxygen chambers, as kids get to feel better, they ask to go in the chambers. To go slightly off topic, we were in the car earlier today, my daughter ran in to Waitrose to get some bits for me whilst i stayed in car with Harry, he then continued to say "walk" then there was a pause, then "dog", this is happening quite often lately so we are slowly getting more unprompted language. Happy Christmas to you & Noor and to everyone else on ABE, i will raise my glass on Christmas day and salute all of us warrior Mums & Dads and look forward to the coming year and sharing & hearing more stories of success no matter how small, as im sure you'll agree they make our hearts shine with hope for the future. Season Greetings everyone & Harry xxxxxxxx To: Autism-Biomedical-Europe From: zahrawaheed@...Date: Fri, 23 Dec 2011 13:15:01 +0000Subject: Re: autonomic profiling Hi,So we finally had this done. The results almost made me burst into tears. Noor's oxygen levels were extremely low - 7 instead of a normal 70. Dr. Goyal said he was amazed how she was able to learn anything with these sort of levels.We are now using an oxygen concentrator for 8 weeks (2-3 hours a day).Dr. Goyal says that he is confident that this will make a huge difference to Noor's cognitive function. He suspects viral toxicity so looks like we're going to have to start with anti virals.He also feels that her partial epilepsy is a direct result of the viral toxicity. Fortunately I haven't seen a seizure in 8 months (we were having 4 a month - very brief seizures involving twitching of the right cheek)Noor's case has baffled so many people as she doesn't present with typical symtoms and behaviours. So far I have seen subtle improvements in certain areas - no WOWs.Day 3 of taking oxygen and I'm really pleased that she is keeping the mask on without much of a struggle, I'm really proud of her,Zahra>> I didn't realise they had to wear a mask at night. Is it all night long?> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2012 Report Share Posted January 29, 2012 Hi Zahra, It's good to hear that you have seen improvement from one of the treatment.Last week my son had the basic one,Roni's oxygen level was 94 or something(forgotten!) but his CO2 level was very low as he was hyperventilating.The technician told me that the normal value is around 40 and my son's one is 16.He was like in a state of extreme calmness and I was strongly suspicious about the pre seizure activity as his body possbily was becoming very alkaline. Unfortunately on the way back from the Breakspear he had a seizure in the bus..At present I am following Yasko protocol and lots of gut supplements in practice on a daily dose.I see some viral possibly detox type of condition..low grade of temperature, tiny red spots on his face ,shivering etc...I am sure viruses play a big role.I would like to hear DRGOyal's view about the test conclusion at Breakspear, I haven't received it yet.. Good to hear your child's progress..If you start antiviral please share,I would like to hear. All the best nevin > >> > >> I didn't realise they had to wear a mask at night. Is it all night long? > >> > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2012 Report Share Posted January 29, 2012 Hi Alison, Zahra explained the process nicely.The cost must be around £200.00.Dr Goyal has been insisting me in the last two years to go for a full test but it is costly and I wasn't sure what will happen after this, would it lead us any therapy, I wasn't sure and Caudwell doesn't support this one.So, I accepted the basic one.I will share the result with my neurologist to see if he gives any importance, he should I believe..They know the hyperventilation problem but simplified as " behavioural " which I strongly believe it is not, possibly links with brain stem. Anyway, we had the test, my son was very cooperative ,we saw DrGoyal first then the test then I didn't see him again, so I am expecting his comments..I think it is worth doing it to push doctors to look at the whole issue more closely. Nevin > > > >> > > > >> I didn't realise they had to wear a mask at night. Is it all night > > long? > > > >> > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2012 Report Share Posted January 29, 2012 Hi Alison, Zahra explained the process nicely.The cost must be around £200.00.Dr Goyal has been insisting me in the last two years to go for a full test but it is costly and I wasn't sure what will happen after this, would it lead us any therapy, I wasn't sure and Caudwell doesn't support this one.So, I accepted the basic one.I will share the result with my neurologist to see if he gives any importance, he should I believe..They know the hyperventilation problem but simplified as " behavioural " which I strongly believe it is not, possibly links with brain stem. Anyway, we had the test, my son was very cooperative ,we saw DrGoyal first then the test then I didn't see him again, so I am expecting his comments..I think it is worth doing it to push doctors to look at the whole issue more closely. Nevin > > > >> > > > >> I didn't realise they had to wear a mask at night. Is it all night > > long? > > > >> > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2012 Report Share Posted January 29, 2012 Hi Alison, Zahra explained the process nicely.The cost must be around £200.00.Dr Goyal has been insisting me in the last two years to go for a full test but it is costly and I wasn't sure what will happen after this, would it lead us any therapy, I wasn't sure and Caudwell doesn't support this one.So, I accepted the basic one.I will share the result with my neurologist to see if he gives any importance, he should I believe..They know the hyperventilation problem but simplified as " behavioural " which I strongly believe it is not, possibly links with brain stem. Anyway, we had the test, my son was very cooperative ,we saw DrGoyal first then the test then I didn't see him again, so I am expecting his comments..I think it is worth doing it to push doctors to look at the whole issue more closely. Nevin > > > >> > > > >> I didn't realise they had to wear a mask at night. Is it all night > > long? > > > >> > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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