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Everything posted by bev

  1. Hi, Sorry - I cant answer your question - but I just wanted to say I am thinking of you and that you are not boring anyone - you have very real concerns and I am hoping that someone with more experience can help you. Best wishes. Bev x
  2. Hi Cheri, The reasons I stopped the taurine were that my son is diabetic and i had read that it can lower BP and also lower blood glucose levels. I also read somewhere (cant remember where now) that for one child it actually made things worse. But after I posted the message I decided to put him back on it as things were quite bad after the macdonalds food etc. I have chatted with him today and explained that, for now, we need to keep his food 'clean' and he understands. I am guessing the macdonalds food contains msg and various other 'nasties' so will keep away from it for now. Is there a l
  3. Hi all, I havent been on for a while as things had seemed settled (still ticcing - but not too bad). Anyway, for various reasons I decided to take son off taurine 3 days ago. Today he has started with more tics (same tics just more of them) and I am wondering if its connected to the taurine? He also ate a Macdonalds meal tonight and am wondering if this could also have had an effect? He normally eats very healthy 'free from' food - but just gave him a treat. Would stopping the taurine show a marked difference? I am thinking I might start him back on it tomorrow - any advice? He also just t
  4. Hi all, I just wanted to thank the people on this forum for having a forum! I live in the UK and if it wasnt for this forum - I would not have 'met' with the lovely 'jewels' - also from the UK. We spoke on the phone today and she has helped me understand so much. My son had an infection and she told me which antibiotic would be good to try in case he has PANDAS - so I went armed with all the information (you wouldnt believe how little our docs know about pandas) and ready to beg for the antibiotic, however, he just gave it to me anyway - the right one! Hopefully it will be of benefit - but if
  5. HI JUles, Nice to hear from you again! I didnt know the doc would test for strep if i asked. What do i say my reasons are for testing because as far as i know they wouldnt give abx for a sore throat? If it is strep - what does this prove? What are the abx they use for PANDAS - i get so confused reading all the PANDAS things to be honest and i dont always recognise what is an antibiotic and what is a test! What is the difference between the 24 and 48 hour culture? Sorry for all the questions - as you know i am fairly new to all this - so need as much inforamtion as i can get. Also, if i ask fo
  6. Hi Cheri, I see what you mean - I thought you meant for PANDAS etc. The problem here is that if you ask for a strep test for a sore throat - the Doctor would laugh you out of the surgery! They dont normally give anything for things like sore throats so they take the view that if there is no treatment required - then there is no test required either. Yesterday I had to ring the GP for some antibiotics because my son had a slight infection from his canula (insulin pump) and I was worried that this may turn nasty and send his sugars high. The nurse said she wouldnt give me any without seeing
  7. Thankyou Cheri, I did think about a strep test - however as we are in the UK it is easier said than done! There is only one PANDAS doctor and you have to book an appointment months in advance! Today I went to see a homeopathist and she has given me a tincture for my son to take with water. It contains chamomile,Balm, and Scullcap. I will give this a try and see what happens. She also gave me a rub for his neck containing a few essential oils that should help to relieve the stiffness he is feeling. She did seem to know her stuff and wants me to go back and report if there are any change
  8. I think I may have found out why tics have increased. My son had slightly sore dry throat for the past 2 days, and this morning he has woken and his blood sugars are 15 which is very high and always indicates an infection or illness so needs more insulin. I think being ill has triggered more tics. Will the tics subside to previous levels when he is feeling better? Thanks for any advice. x
  9. Hi Cheri, Thankyou for you reply. I had sort of thought he was on a high dose. He is approx 39kg and he is a slim build - he is 11. We have only tried the epsom bath once but unfortunately he had a hypo whilst in the bath and then afterwards he couldnt sleep! But, i dont know if he had the hypo because of the bath or if he was going to have one anyway! Also, he was starting back at school the next day so this may have contributed to the lack of sleep problem! I did try the mag rub on his neck and he liked it - not sure if it stopped anything - but i will give it another go. Not s
  10. HI all, After having son on supplements for 3 weeks - he had shown a great improvement in his neck and facial tics. But over the last 2 days his neck jerk has got a lot worse and his neck is really sore. His facial gramace has also started again. He has been eating all organic and no rubbish in his foods for 3 weeks now. He is taking 500g magnesium, vit B, probiotic, and taurine 500g per day. Can I increase any of these - or is he on the maximum amount? Thanks.
  11. Hope, That story is just beautiful - thankyou for sharing with us all. I do think that all our children have a special *gift* - not in a way that people recognise as a *gift*. I mean that our children are all so strong and dynamic in the face of what they have to deal with on a daily basis. I know my son is the happiest, most cheerful child i have met (a bit biased maybe)- and he finds happiness in the most unusual things. He is the most thoughtful of all my three children and he is the youngest! Your son sounds wonderful and strong and you have every right to be a 'proud mommy' - he is a
  12. This poem was posted on another site - nothing to do with TS - but i thought it had a ring of truth about it and thought i would share. A while ago, an elephant moved into my living room. This is the story of my reaction then, and now: " Oh no! What the heck is that?!?!? Is that an elephant? What is it doing in my living room?! That doesnt belong here! I want it out! My living room isnt big enough for that thing. It's making an awful mess! Whats that? I have to take care of it? I don't know the first thing about elephant care. No one in my family has an elephant in thei
  13. HI Faith, The tics have been there since august last year, but he did have throat clearing since he was about 7ish - not sure if this was a habit or tics though! I am taking things slowly as i dont want to get confused with what is working and what isnt. Obviously i dont know how long he will be like this - so take the view that a healthier diet is best anyway as he is diabetic on a pump etc.. He is also slim, but i make sure he gets enough of the 'healthy' carbs' to help him grow etc. I think boys tend to be slim until they hit 14 or 15 and then start to bulk out - so not worried about hi
  14. Hi all, I am feeling confused today. I rang sons phsycologist to ask for a referral to a tourettes specialist (think there is only 1 in the UK) - and he asked why. I said I want to rule out PANDAS and dont want him labelled as he hasnt actually been diagnosed as tourettes etc.. Anyway, he said that he didnt think my son has tourettes - he just has tics! He said that my son would not be able to sit still at all and that he would have an obvious vocal tic if he had tourettes. Also my son doesnt display any of the other tourettes traits like OCD or ADHD etc.. He thinks its transient tics
  15. Hi, I have just got one of these messages from brickey - it tells me to do a virus check - am i right to just ignore it? Thanks. Bev
  16. Hi Jules, Thanks so much for all the information - I have sent a reply with more questions - sorry! Also thankyou Dr T! Bev x
  17. Hi Vickie, The GP's here do advise letting children and adults take ibuprofen, but they are very cautious about taking it for too long. I think they mean if your taking it without an end in site - this is when it becomes dangerous. I would think that giving it for a week or two would be fine - but anything longer and i think your risking stomach ulcers and all sorts of internal conditions. I only know this because i thought i had a stomach ulcer last month and had an endoscopy to check it - it turned out to be acid reflux. But the consultant told me i shouldnt take ibuprofen as i may now b
  18. HI all, I am giving my son (11) magnesium. taurate, vit B, and probiotic. He has taken these for 1 week now and i have seen a bit of improvement, he also says that he *feels* like ticcing less. So, what is the next step? What would be the next supplement to give to him - I want to do things slowly so i can tell if something is upsetting his system. Many thanks. Bev
  19. Hi Vickie, Thanks so much for that info. I have sent a message. Bev x
  20. Sorry to butt in - but i was told by our GP that taking ibuprofen for any length of time can be dangerous and even cause stomach ulcers! Are you certain that it is safe for children to take regularly? Bev
  21. Hi, This is a message for 'Jewels' from the UK. I am also in the UK and cant find anyone who understands even the smallest thing about tics - have been offered clonidine - but no diagnosis etc.. I was wondering where in the UK you have found the help for your child? Would it be possible for you to give me details of the Doctor you have found? Many thanks. Bev
  22. Hi all, Son has been taking taurine,magnesium, vit B and probiotic for 1 week now. There has been a small improvement in the neck jerk. He is still doing it - but its not as violent and he also said he doesnt *feel* the need to do it as much. I am keeping my fingers crossed that there will be more improvement over the next few weeks. How long did it take for others to see any improvements? Also, I realise we arent giving him the full list of supplements that you all give, I just wanted to start slowly just in case something reacted with him. He was taking flax oil - but he hates it and als
  23. Hi Jules, I am in the UK and would be interested to know about the doc your referring to? My son has tics - no diagnosis yet - but as you must know the UK are somewhat behind with treating TS etc - so i am interested in anyone who has knowledge of PANDAS etc. I understand if you dont want to give the doc's name. Bev x
  24. I use a tablespoon epsom for about 1/4 cup cream here is a more recent and very innovative method for just magnesium cream http://neurotalk.psychcentral.com/post608661-182.html however, mag sulfate as in the epsom salts has additional benefits to just mag alone, as the sulfates have their own effect in conjunction with the magnesium effect Thanks Cheri, Funnily enough when we were coming home in the car today my son asked me if there was anything i could rub on his neck as it felt stiff. I was wondering what would be the best product - so great timing - thanks again! Wil
  25. Hi all, I was having trouble trying to find taurine etc at our local health food shops so went into a little village and found a wonderful 'holistic' shop that sells everything you could ever want! Anyway, I told the owner what it was for and he said to also give my son a probiotic. He said the drinks you can buy in the supermarket werent any good because once you have drunk them they lose their effect by the time they hit the stomach etc - so he showed me a tablet form of a probiotic which i have bought which is slow release and works better. For those who use probiotics - do you use tabl
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