bev

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

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 list of 'clean' foods available on here I could look at? I nearly bought some ham today at the deli - but then thought it may contain preservatives and other things - but i do need these sorts of things for sandwiches for school lunch - any ideas? I noticed also that bacon has preservatives in! I was of the impression that age 12 was the peak 'tic' age and that things mostly started to get better rather than worse around this age group. So are you saying that things are likely to get worse as my son goes into puberty? Thankyou for your reply - very helpful. Bev x

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 turned 12 x 2 weeks ago so wondering if his age is something to do with it? Thanks. x

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 not - at least i have tried and maybe can rule some things out. So thankyou forum members - i would be lost without this place. And thankyou Jewels - your amazing. Bev x

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 for a different abx - what do i say is the reason? Many thanks. Bev x

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 it first and gave me some topical antibiotic cream instead. She did offer an appointment, but as my son spends so much time at clinics and hospitals i knew he wouldnt be keen to go and would rather be out for the day. Over here they dont like giving antibiotics routinely as they take the view that if you can fight it yourself then this helps to strengthen the immune system. Did you have any thoughts on the homeopathy? Thanks. Bev x

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 changes etc. I will let you know if i see any results. Thankyou again Cheri - your very kind. Bev x

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

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 sure if he has any new triggers because we are on half term from school - i suppose it could be that he is spending more time at home and there may be a trigger in the house? He did tell me 2 days ago that he feels 'odd' and he found it hard to describe. He said that he felt like crying and felt very emotional about something but not sure what it was. I am wondering whether he is a bit depressed. He has needed lots of hugs and cuddles and although he always says he loves me - he has been saying it over and over for the past week. He even held my hand today at the shops - in public! He normally would not do this - he is 11 and worries about what people will say! His friends had a get-together this week and he wasnt invited - i think its because of the diabetes - people seem very scared of it. I played it down a lot and told him we could have a sleep-over in the next couple of weeks so he didnt feel bad - so not sure if this has upset him more than i have realised. The only other thing i can think of is we had soot falling from out chimney and had to have the chimney sweep out to clean it all out this morning - can soot be a trigger do you think? Thanks. Bev x

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.

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 star and you too. Well done to your son from me. Keep those elephants at bay! Bev x

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 their living room. Ok, to be honest, Im afraid of it, I dont know if I can take care of it properly. What if I screw it up? what if I fail? Can I run away from it for awhile and think about things? Oh, there's others with elephants in their living rooms too? So they would understand right? Even when others dont. And there's books on elephant care? Thats good I like to read Ok then all right, I'll do my best to take good care of it. When will it leave? What do you mean you dont know?! Ok so I have to take real good care of it and you dont know when it will leave? Dr Faustman? Whos she? Will she be able to make it leave my living room? Well at least someones working on that, thats a comfort. Today: The elephant is still there in the living room. Most days it stays over in the corner, quiet, leaving us plenty of room to live our lives around it. Some days it will try to lumber out in the middle of the room and get in the way. I just give it some extra attention and then gently shove it back there where it belongs. Elephant, I may have to accept your being in my living room but I dont have to like it or you. Just stay out of my boys way, he has lots of plans and dreams and you will never be allowed to get in the way of them.

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 his weight really. I am sure you do the best by your son - and if you have let things slip a little - dont feel guilty about it - family life can be exhausting and i think its ok to have times when things arent so intense. The fact that you recognise this is a plus! I have only been dealing with this for a few months - it must be draining if you have dealt with it for longer. I also have to deal with diabetes - which is a whole other world! But i just tell myself that my son needs a childhood and memories of things that other children do and we shouldnt let the tics or the diabetes rule us! Take care. Bev x

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 as opposed to tourettes. I started son on supplements 2 weeks ago and have seen a big improvement, also cleaned up his diet considerably - mostly 'free from' foods and organic and no msg. So, my question is - Can transient tics benefit from supplements and diet changes - or is it just tourettes that benefits from these changes? I am giving him magnesium,taurate,vit b, and probiotic at the moment. He did have a head jerk - but since taking these things and eating better food it has improved considerably. I would say that his neck jerk rated as a 10 before and now its about a 2 or 3. His tummy tics have also reduced from about an 8 to a 2. He is 11 and has had tics since august last year. Previous to this he only had throat clearing since he was approx 7 or 8. I am wondering if he has reached the peak of tics because of his age and they are starting to decrease - or whether its the change in diet and supplements that has brought this about. Any advice welcomed. Thanks. Bev x

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