Guest guest Posted December 25, 2009 Report Share Posted December 25, 2009 Margaret, I'm glad you're thinking in terms of some viral load. I think you're on the right track. I know it's not helpful having Henry's father the way he is but WE are ALL on your side. Don't forget that! Margaret schrieb: > > Sadly he had a seizure at Midnight Mass. This is the first definite > seizure for over 5 1/2 years and it served to confirm that the episode > his dad saw during the night a couple of months ago was also a > seizure. Henry is (probably) suffering fron two viruses at the moment: > the first, an upper respitory tract infection he has had since Sunday; > the second, the winter vomiting bug which came on last night. > We go to Papworth on 4 January for a first appointment to investigate > sleep problems, possibly finding nocturnal epilepsy. I note that last > night's seizure happened when he was ill and over-tyired: he should > have been in bed and not made to go to church at midnight. > > Tracey, I used the time in A & E to try and coax his dad into taking us > to the Scotson Centre, but he was not persuaded. I said that there was > some evidence that improving breathing would reduce vulnerability to > seizures. > > Margaret > (off to bed now) > > > ------------------------------------------------------------------------ > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.430 / Virus Database: 270.14.119/2585 - Release Date: 12/24/09 08:11:00 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 25, 2009 Report Share Posted December 25, 2009 Poor Henry and poor you Margaret. Hope you get some kip today and some news at Papworth. xxx > > Sadly he had a seizure at Midnight Mass. This is the first definite seizure for over 5 1/2 years and it served to confirm that the episode his dad saw during the night a couple of months ago was also a seizure. Henry is (probably) suffering fron two viruses at the moment: the first, an upper respitory tract infection he has had since Sunday; the second, the winter vomiting bug which came on last night. > We go to Papworth on 4 January for a first appointment to investigate sleep problems, possibly finding nocturnal epilepsy. I note that last night's seizure happened when he was ill and over-tyired: he should have been in bed and not made to go to church at midnight. > > Tracey, I used the time in A & E to try and coax his dad into taking us to the Scotson Centre, but he was not persuaded. I said that there was some evidence that improving breathing would reduce vulnerability to seizures. > > Margaret > (off to bed now) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 25, 2009 Report Share Posted December 25, 2009 Dear Margaret, We are thinking of you and Henry at this time. kind regards, Angelle > > > > Sadly he had a seizure at Midnight Mass. This is the first definite seizure for over 5 1/2 years and it served to confirm that the episode his dad saw during the night a couple of months ago was also a seizure. Henry is (probably) suffering fron two viruses at the moment: the first, an upper respitory tract infection he has had since Sunday; the second, the winter vomiting bug which came on last night. > > We go to Papworth on 4 January for a first appointment to investigate sleep problems, possibly finding nocturnal epilepsy. I note that last night's seizure happened when he was ill and over-tyired: he should have been in bed and not made to go to church at midnight. > > > > Tracey, I used the time in A & E to try and coax his dad into taking us to the Scotson Centre, but he was not persuaded. I said that there was some evidence that improving breathing would reduce vulnerability to seizures. > > > > Margaret > > (off to bed now) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 25, 2009 Report Share Posted December 25, 2009 Vit E and Taurine is said to help some people with seizures Margaret but your probably using those already. Vicky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 25, 2009 Report Share Posted December 25, 2009 Margaret, hopefully 2010 will bring good news for you and Henry Love Vicky > > > > > > Sadly he had a seizure at Midnight Mass. This is the first definite seizure for over 5 1/2 years and it served to confirm that the episode his dad saw during the night a couple of months ago was also a seizure. Henry is (probably) suffering fron two viruses at the moment: the first, an upper respitory tract infection he has had since Sunday; the second, the winter vomiting bug which came on last night. > > > We go to Papworth on 4 January for a first appointment to investigate sleep problems, possibly finding nocturnal epilepsy. I note that last night's seizure happened when he was ill and over-tyired: he should have been in bed and not made to go to church at midnight. > > > > > > Tracey, I used the time in A & E to try and coax his dad into taking us to the Scotson Centre, but he was not persuaded. I said that there was some evidence that improving breathing would reduce vulnerability to seizures. > > > > > > Margaret > > > (off to bed now) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 25, 2009 Report Share Posted December 25, 2009 lets hope his dad WILL accept the idea of the scotson centre, linda is giving a talk on the 12 th jan at my local TA support group please try to come along isobelwiza@... in battersea...ps anti virals seem your best step... > > > > > > > > Sadly he had a seizure at Midnight Mass. This is the first definite seizure for over 5 1/2 years and it served to confirm that the episode his dad saw during the night a couple of months ago was also a seizure. Henry is (probably) suffering fron two viruses at the moment: the first, an upper respitory tract infection he has had since Sunday; the second, the winter vomiting bug which came on last night. > > > > We go to Papworth on 4 January for a first appointment to investigate sleep problems, possibly finding nocturnal epilepsy. I note that last night's seizure happened when he was ill and over-tyired: he should have been in bed and not made to go to church at midnight. > > > > > > > > Tracey, I used the time in A & E to try and coax his dad into taking us to the Scotson Centre, but he was not persuaded. I said that there was some evidence that improving breathing would reduce vulnerability to seizures. > > > > > > > > Margaret > > > > (off to bed now) > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 25, 2009 Report Share Posted December 25, 2009 Isobel, I hope so too. Thank you everyone for your kind posts. Henry is a lot better now but he will be going back on the B6 which knocked the seizure disorder which he had as a baby (infantile spasms)on the head. I shall also be looking into neurological support through biomed _ I haven't been focusing on it at all for years as he has been seizure free and progressing well. If there is someone on the list who is knowledgeable about biomed and seizures it would be good if we could have a chat. Margaret > > > > > > > > > > Sadly he had a seizure at Midnight Mass. This is the first definite seizure for over 5 1/2 years and it served to confirm that the episode his dad saw during the night a couple of months ago was also a seizure. Henry is (probably) suffering fron two viruses at the moment: the first, an upper respitory tract infection he has had since Sunday; the second, the winter vomiting bug which came on last night. > > > > > We go to Papworth on 4 January for a first appointment to investigate sleep problems, possibly finding nocturnal epilepsy. I note that last night's seizure happened when he was ill and over-tyired: he should have been in bed and not made to go to church at midnight. > > > > > > > > > > Tracey, I used the time in A & E to try and coax his dad into taking us to the Scotson Centre, but he was not persuaded. I said that there was some evidence that improving breathing would reduce vulnerability to seizures. > > > > > > > > > > Margaret > > > > > (off to bed now) > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 25, 2009 Report Share Posted December 25, 2009 PS which anti-virals, please? I have in the cupboard VitC, echinacea, colloidal silver, olive leaf extract, Mandi's elderberry extract and heaven knows what else. Have no cod liver oil, sadly. Margaret > > > > > > > > > > Sadly he had a seizure at Midnight Mass. This is the first definite seizure for over 5 1/2 years and it served to confirm that the episode his dad saw during the night a couple of months ago was also a seizure. Henry is (probably) suffering fron two viruses at the moment: the first, an upper respitory tract infection he has had since Sunday; the second, the winter vomiting bug which came on last night. > > > > > We go to Papworth on 4 January for a first appointment to investigate sleep problems, possibly finding nocturnal epilepsy. I note that last night's seizure happened when he was ill and over-tyired: he should have been in bed and not made to go to church at midnight. > > > > > > > > > > Tracey, I used the time in A & E to try and coax his dad into taking us to the Scotson Centre, but he was not persuaded. I said that there was some evidence that improving breathing would reduce vulnerability to seizures. > > > > > > > > > > Margaret > > > > > (off to bed now) > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 25, 2009 Report Share Posted December 25, 2009 Yes, Margaret, we are thinking of you and Henry too. I hope that things settle down and you find the right way forward. Darla x 2009/12/25 Margaret <m.collins9@...>  PS which anti-virals, please? I have in the cupboard VitC, echinacea, colloidal silver, olive leaf extract, Mandi's elderberry extract and heaven knows what else. Have no cod liver oil, sadly.Margaret > > > > >> > > > > Sadly he had a seizure at Midnight Mass. This is the first definite seizure for over 5 1/2 years and it served to confirm that the episode his dad saw during the night a couple of months ago was also a seizure. Henry is (probably) suffering fron two viruses at the moment: the first, an upper respitory tract infection he has had since Sunday; the second, the winter vomiting bug which came on last night. > > > > > We go to Papworth on 4 January for a first appointment to investigate sleep problems, possibly finding nocturnal epilepsy. I note that last night's seizure happened when he was ill and over-tyired: he should have been in bed and not made to go to church at midnight. > > > > > > > > > > Tracey, I used the time in A & E to try and coax his dad into taking us to the Scotson Centre, but he was not persuaded. I said that there was some evidence that improving breathing would reduce vulnerability to seizures. > > > > > > > > > > Margaret> > > > > (off to bed now)> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 25, 2009 Report Share Posted December 25, 2009 Dear Margaret  The best anti viral protocol we have found is bicarb of soda under the tongue and echinacea tablets taken in between times.. Amount under tongue is a small pinch of bicarb... use it regularly during the day...  We have just returned from 's ( Tuesday) Tash was really blue on Monday and suggested we do a deep dive in HBOT.. did the 24 foot 90 minute dive and her colour and her circulation have improved already- Although she is having a lot more seizures at the moment, these are linking in with her growing and her jaw expanding and her breathing becoming stronger... was reassuring saying that increased seizures are not necessarily a bad thing... as the circulation improves with better breathing, the brain and body detoxify and there comes a time when toxins and viruses in the brain begin to be cleared... and the brain reacts to this positive change via seizure activity.  She mentioned something that I was not aware of.. and that is that AEDs actually slow down the blood flow to stop seizure activity... and although there may not be any seizures, the body is not functioning effectively enough to keep body alkaline and reduce risk of toxins and viruses building up in the brain... This is HUGE for us as Neurologist wanted to start adding additional meds to see if she could control seizures... With this new knowledge the answer will always be NO.  Margaret.. I know that you will find a way to get Henry to Scotson is this is the right next step for him.. You will only need to have Henry there for the inital 2 hour assessment... after that you can learn the therapy there without him.. Perhaps his Dad could look after him so that you could have the two days with to perfect the massage technique.  We continue to see gains in Tatijana.. it is a slow and powerful reconfiguration process.. We had someone around at our house today who has not seen Tash for a few months.. and she commented on how relaxed Tash is and more importantly how fluidly she is speaking and how much more comfortable she looks within her skin.  The road to Scotson starts with the two hour visit.. and is very flexible about the time you arrive.. We got caught up with a major incident on the roads the first visit.. and got there about an hour late... and rearranged her day to accommodate us.  Henry's seizures may not be a bad thing.. at his age he may be going through a developmental/ puberty / teething issue which reduces the effective oxygen levels in his body... and these changes only take place when the body is feeling healthy enough to make the changes.  If it is helpful and Henry's Dad is willing to learn a little more about Scotson, I am more than happy for him to contact me... So many people are so programmed to believe in conventional medicine that the alternate therapies lie outside of their comfort Zone.. I know that anyone who sees the pictures of the changes that have been documented in LInda's patients will begin to believe that their children's problems can be overcome too.   There is a way Margaret   Best wishes    Tracey    On Fri, Dec 25, 2009 at 8:28 PM, <MaddiganV@...> wrote:  Vit E and Taurine is said to help some people with seizures Margaret but your probably using those already. Vicky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 25, 2009 Report Share Posted December 25, 2009 Hi Margaret Sorry to hear about Henry's seizure. We don't have any experience of seizures but the first thought that came to my mind was that Eddie is not at all good in church services with lots of candles. We had to leave the candle-lit carol service after just a few minutes last year and decided not to go this year. I am slightly sensitive to candle-fumes as well although they don't seem to bother Sandy at all. Best wishes for the new year! Tim > > Sadly he had a seizure at Midnight Mass. This is the first definite seizure for over 5 1/2 years and it served to confirm that the episode his dad saw during the night a couple of months ago was also a seizure. Henry is (probably) suffering fron two viruses at the moment: the first, an upper respitory tract infection he has had since Sunday; the second, the winter vomiting bug which came on last night. > We go to Papworth on 4 January for a first appointment to investigate sleep problems, possibly finding nocturnal epilepsy. I note that last night's seizure happened when he was ill and over-tyired: he should have been in bed and not made to go to church at midnight. > > Tracey, I used the time in A & E to try and coax his dad into taking us to the Scotson Centre, but he was not persuaded. I said that there was some evidence that improving breathing would reduce vulnerability to seizures. > > Margaret > (off to bed now) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 25, 2009 Report Share Posted December 25, 2009 Dear Margaret, Sorry to hear your child's seizure.My son recently had the first convulsion,the neurologist didn't call it epileptic seizure yet.He is sixteen.Possible cause for his seizure may be related with his condition which is hyperventilation.He is going to have a special blood test for that..But our dr recommended to keep taking Taurine and B6.When he had the seizure I also taught that it may be a viral problem, his body was cold,his temperature was low just one day before the incidence. Sensory factors,environment could be a trigger factor.I agree with Tim. Hope Henry will get better soon. Nevin --- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 25, 2009 Report Share Posted December 25, 2009 Yes, not a great Christmas present for either of you. Hope you get some good ideas here to help him nad some pleasure out of the rest of the xmas hols. Sara x wrote: > > Poor Henry and poor you Margaret. Hope you get some kip today and some > news at Papworth. xxx > > > > > > Sadly he had a seizure at Midnight Mass. This is the first definite > seizure for over 5 1/2 years and it served to confirm that the episode > his dad saw during the night a couple of months ago was also a > seizure. Henry is (probably) suffering fron two viruses at the moment: > the first, an upper respitory tract infection he has had since Sunday; > the second, the winter vomiting bug which came on last night. > > We go to Papworth on 4 January for a first appointment to > investigate sleep problems, possibly finding nocturnal epilepsy. I > note that last night's seizure happened when he was ill and > over-tyired: he should have been in bed and not made to go to church > at midnight. > > > > Tracey, I used the time in A & E to try and coax his dad into taking > us to the Scotson Centre, but he was not persuaded. I said that there > was some evidence that improving breathing would reduce vulnerability > to seizures. > > > > Margaret > > (off to bed now) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2009 Report Share Posted December 26, 2009 Penny, Was the doctor who recommended the B6 and taurine a neurologist? I know they can recommend B6 but I didn't know tney might now be using taurine as well. Would you mind telling me what dose was recommended and for what body weight, please, just so I an have a rough idea of what might help. I won't construe this as being medical advice. (Henry was put on 100mg/day of B6 for seizures by the NHS neuro when he was 7 months old and weighed about 10 kg.(The RDA of this vitamin for him was under 1mg.) I stopped the B6 when he was coming up to 5 years of age. I think at that point he was on 350mg/day. I don't know whether there's any evidence of peripheral neuropathy at that dose and weight - must visit the B6 kids group again - the first group I ever joined.) Margaret > > > Dear Margaret, > > Sorry to hear your child's seizure.My son recently had the first convulsion,the neurologist didn't call it epileptic seizure yet.He is sixteen.Possible cause for his seizure may be related with his condition which is hyperventilation.He is going to have a special blood test for that..But our dr recommended to keep taking Taurine and B6.When he had the seizure I also taught that it may be a viral problem, his body was cold,his temperature was low just one day before the incidence. > Sensory factors,environment could be a trigger factor.I agree with Tim. > Hope Henry will get better soon. > Nevin > --- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2009 Report Share Posted December 26, 2009 Hi Margaret, sorry to hear what happened. I would look into rx antivirals as well as/in addition to seizure preventives like b6 etc Natasa Penny, Was the doctor who recommended the B6 and taurine a neurologist? I know they can recommend B6 but I didn't know tney might now be using taurine as well. Would you mind telling me what dose was recommended and for what body weight, please, just so I an have a rough idea of what might help. I won't construe this as being medical advice. (Henry was put on 100mg/day of B6 for seizures by the NHS neuro when he was 7 months old and weighed about 10 kg.(The RDA of this vitamin for him was under 1mg.) I stopped the B6 when he was coming up to 5 years of age. I think at that point he was on 350mg/day. I don't know whether there's any evidence of peripheral neuropathy at that dose and weight - must visit the B6 kids group again - the first group I ever joined.) Margaret > > > Dear Margaret, > > Sorry to hear your child's seizure.My son recently had the first convulsion,the neurologist didn't call it epileptic seizure yet.He is sixteen.Possible cause for his seizure may be related with his condition which is hyperventilation.He is going to have a special blood test for that..But our dr recommended to keep taking Taurine and B6.When he had the seizure I also taught that it may be a viral problem, his body was cold,his temperature was low just one day before the incidence. > Sensory factors,environment could be a trigger factor.I agree with Tim. > Hope Henry will get better soon. > Nevin > --- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2009 Report Share Posted December 26, 2009 Dear Margaret, Sorry for responding late.Our Dr from Breakspear put my son on B6 50mg and Taurine 500mg capsules twice a day.He has been on these since summer.We saw a neurologist at Royal Free Hospital.I particularly asked for any supplements which may be helpful preventing the seizures ,however they didn't recommend anything except good vitamin/mineral combinations,GF/CF diets...I had an impression that the dr wasn't making any links with seizures and supplements or any other reasoning like hyperventilation....MY son has managed to reach 46.5kg now.Perhaps his B6 is low..I am giving him P5P as B6 and BN complex with Co Enzymes.I am not sure B6 is the right level.If I am not wrong Dr Rimland gave the correct doses of B6 regarding to the body weight.I should check it as well.If I find the article I will share it. nevin > > > > > > Dear Margaret, > > > > Sorry to hear your child's seizure.My son recently had the first convulsion,the neurologist didn't call it epileptic seizure yet.He is sixteen.Possible cause for his seizure may be related with his condition which is hyperventilation.He is going to have a special blood test for that..But our dr recommended to keep taking Taurine and B6.When he had the seizure I also taught that it may be a viral problem, his body was cold,his temperature was low just one day before the incidence. > > Sensory factors,environment could be a trigger factor.I agree with Tim. > > Hope Henry will get better soon. > > Nevin > > --- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2009 Report Share Posted December 26, 2009 Try seeing a cranial osteopath or chiropractor, helped us a lot with seizures. look for someone with paediatric experience and preferably understanding of special needs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2009 Report Share Posted December 26, 2009 Dear Margaret, Sorry to hear that Henry had a seizure. It does seem like his seizure threshold has been lowered by the viruses and perhaps as has been mentioned the mass (flickering candles ...maybe also contributed)!!!! Here's hoping that it will all settle down and go no further. So far with my son, I've only found B6 (P5P) with magnesium to be the only helpful supplements biomedically, but we all know our children are different and respond differently, so the taurine is worth a trial..... What about Omega 3 and perhaps looking at increasing the levels of good fats in his diet ???? I also think a visit to Scotson is a good idea. We are also doing the TST exercises, we have not seen a reduction in seizures as yet but we have seen a few small changes (bearing in mind that ds has profound and complex difficulties). has a wealth of information and is the only person so far to be able to explain the mystery why my ds has more seizures following a good night sleep and fewer seizures when he doesn't sleep at all (yet it should be the other way round!) and it's all to do with breathing. Thinking of you and Henry. emily xx > > Sadly he had a seizure at Midnight Mass. This is the first definite seizure for over 5 1/2 years and it served to confirm that the episode his dad saw during the night a couple of months ago was also a seizure. Henry is (probably) suffering fron two viruses at the moment: the first, an upper respitory tract infection he has had since Sunday; the second, the winter vomiting bug which came on last night. > We go to Papworth on 4 January for a first appointment to investigate sleep problems, possibly finding nocturnal epilepsy. I note that last night's seizure happened when he was ill and over-tyired: he should have been in bed and not made to go to church at midnight. > > Tracey, I used the time in A & E to try and coax his dad into taking us to the Scotson Centre, but he was not persuaded. I said that there was some evidence that improving breathing would reduce vulnerability to seizures. > > Margaret > (off to bed now) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2009 Report Share Posted December 26, 2009 Hi , Is it very complicated to explain why your son's seizures are worse after a good night's sleep? Tom doesn't have epilepsy (although I used to suspect petit mals) but he is better, autism wise after a terrible night's sleep. Sara x emilyscorer wrote: > > > Dear Margaret, > > Sorry to hear that Henry had a seizure. It does seem like his seizure > threshold has been lowered by the viruses and perhaps as has been > mentioned the mass (flickering candles ...maybe also contributed)!!!! > Here's hoping that it will all settle down and go no further. So far > with my son, I've only found B6 (P5P) with magnesium to be the only > helpful supplements biomedically, but we all know our children are > different and respond differently, so the taurine is worth a trial..... > What about Omega 3 and perhaps looking at increasing the levels of good > fats in his diet ???? > > I also think a visit to Scotson is a good idea. We are also doing > the TST exercises, we have not seen a reduction in seizures as yet but > we have seen a few small changes (bearing in mind that ds has profound > and complex difficulties). has a wealth of information and is > the only person so far to be able to explain the mystery why my ds has > more seizures following a good night sleep and fewer seizures when he > doesn't sleep at all (yet it should be the other way round!) and it's > all to do with breathing. > > Thinking of you and Henry. > > emily xx > > > > > > Sadly he had a seizure at Midnight Mass. This is the first definite > seizure for over 5 1/2 years and it served to confirm that the episode > his dad saw during the night a couple of months ago was also a seizure. > Henry is (probably) suffering fron two viruses at the moment: the first, > an upper respitory tract infection he has had since Sunday; the second, > the winter vomiting bug which came on last night. > > We go to Papworth on 4 January for a first appointment to investigate > sleep problems, possibly finding nocturnal epilepsy. I note that last > night's seizure happened when he was ill and over-tyired: he should have > been in bed and not made to go to church at midnight. > > > > Tracey, I used the time in A & E to try and coax his dad into taking us > to the Scotson Centre, but he was not persuaded. I said that there was > some evidence that improving breathing would reduce vulnerability to > seizures. > > > > Margaret > > (off to bed now) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2009 Report Share Posted December 26, 2009 Thank you, . I haven't used taurine before. These are the supplements that people have suggested to me but I am not sure how to use them together or at what doses: it would be very helpful if I could be pointed towards guidelines about their use. (If someone is willing to share the doses they have been using I won't treat it as being medical advice.) So far I have had recommended: B6/P5P (we know this stopped his seizures in infancy but I think he became more relaxed and slept better when he stopped it. His dose was 10mg/kg per day, which is a lot.) folinic acid (never used it, don't know which brand to use or how much) B complex EFAs (how to balance evening primrose oil with omega 3s from fish oil?) zinc (we used to supplement it at a very high level but he apparently failed to use/assimilate it, not sure what form to use and at what dose ) Manganese, magnesium (not sure how to dose these against the B6) biotin (how much - I couldn't find a brand with much in it? I remember people were also using carnitine and some thought it very effective at the time but I don't know whether people are still using it. Scotson - I have got to find someone who could give us a lift there. Public transport is about 4 to 6 hours each way. By car it is about half that. Margaret > > > > Sadly he had a seizure at Midnight Mass. This is the first definite > seizure for over 5 1/2 years and it served to confirm that the episode > his dad saw during the night a couple of months ago was also a seizure. > Henry is (probably) suffering fron two viruses at the moment: the first, > an upper respitory tract infection he has had since Sunday; the second, > the winter vomiting bug which came on last night. > > We go to Papworth on 4 January for a first appointment to investigate > sleep problems, possibly finding nocturnal epilepsy. I note that last > night's seizure happened when he was ill and over-tyired: he should have > been in bed and not made to go to church at midnight. > > > > Tracey, I used the time in A & E to try and coax his dad into taking us > to the Scotson Centre, but he was not persuaded. I said that there was > some evidence that improving breathing would reduce vulnerability to > seizures. > > > > Margaret > > (off to bed now) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2009 Report Share Posted December 28, 2009 Thanks , We see Marc Deora in Cambridge who has over 10 years experience as a paediatric (cranial) osteopath and only charges £29, which I think is a bargain. Henry goes every 5 weeks, more if he has an accident. He last went on 21 December. I think Marc is away this week. Margaret > > Try seeing a cranial osteopath or chiropractor, helped us a lot with seizures. look for someone with paediatric experience and preferably understanding of special needs. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2009 Report Share Posted December 28, 2009 Hi Margaret  We sometimes see seizure activity a few days after Cranial work.. we used to think it was a bad thing... however I am beginning to believe that this is a positive step to help uncrumple Tatijana's compressed hippocampus in her brain...  Best wishes    Tracey On Mon, Dec 28, 2009 at 8:27 AM, Margaret <m.collins9@...> wrote:  Thanks , We see Marc Deora in Cambridge who has over 10 years experience as a paediatric (cranial) osteopath and only charges £29, which I think is a bargain. Henry goes every 5 weeks, more if he has an accident. He last went on 21 December. I think Marc is away this week. Margaret >> Try seeing a cranial osteopath or chiropractor, helped us a lot with seizures. look for someone with paediatric experience and preferably understanding of special needs. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2009 Report Share Posted December 28, 2009 Margaret, Sorry to hear about your son's seizures. Very worrying seizures. My reply is late, but for anti-virals I would consider higher doses of C, the OLE, and elderberry. All three of these can be used long term. Echinacea, which will boost the immune system rather than attach viruses directly, should be used in bursts, so two weeks on, a few off, two weeks on again. I would use the silver only for bacterial issues and then only in a short burst of a few days. My son seemed to have seizures when we were treating viruses. I am sure they are closely related. Anita > > > > > > > > > > > > Sadly he had a seizure at Midnight Mass. This is the first definite seizure for over 5 1/2 years and it served to confirm that the episode his dad saw during the night a couple of months ago was also a seizure. Henry is (probably) suffering fron two viruses at the moment: the first, an upper respitory tract infection he has had since Sunday; the second, the winter vomiting bug which came on last night. > > > > > > We go to Papworth on 4 January for a first appointment to investigate sleep problems, possibly finding nocturnal epilepsy. I note that last night's seizure happened when he was ill and over-tyired: he should have been in bed and not made to go to church at midnight. > > > > > > > > > > > > Tracey, I used the time in A & E to try and coax his dad into taking us to the Scotson Centre, but he was not persuaded. I said that there was some evidence that improving breathing would reduce vulnerability to seizures. > > > > > > > > > > > > Margaret > > > > > > (off to bed now) > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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