lola

Hi there, I think we are at the same stage with the whole acceptance thing. My son was diagnosed a few weeks ago, we knew he had little "habits" for a couple of years now but they didnt seem that bad until a recent holiday to the US,they went crazy, this had led to his diagnosis. I couldnt accept it at all and I can honestly say its only this week it has sunk in. I spent the last 2 weeks crying, I stupidly went on to youtube to see if i could find a documentary about tourettes i had read about, this was the worst thing i could have done because i ended up watching loads of clips of people with really severe tics and it absolutely terrifed me, i was histerical and my partner had to come home from work. that was the lowest point for me. I'm sorry i cant answer any of your questions because it is all so new to me, but some people on ths forum have given me some fantastic information, they have lots of experience on the condition. I met with a family friend the other night, she is a head mistress of a local school,she advised me that the condition is more common that people think and that she has 4 kids in school with the condition, mostly it goes un noticed the kids function the same as the other kids. We have to remember that our sons are the same little boys they were before we knew what their diagnosis was. I keep reading that 50% of kids can grow out of it, so i keep focusing on that, if he doesnt grow out of it then we will hopefully know by then all the major triggers and he will be old enough to know what he can and cannot do. my little boy gets really excited too and this is when he tics the most, he can be fine and then he starts talking about our holiday to florida and all the different rides he went on, he tics like mad. i thought he was doing this because his tics were bad on holiday and when he talks about it he remembers how bad he was on holiday. however i think it is just excitement. If you read my thread "my little boy diagnosed with TS" posted earlier this week you can see all the replies and the suggestions for supplements etc. we have had our son on supplements for 3 weeks now and have made big changes to his diet and the change has been quite remarkable. I know exactly how you are feeling, but you will get better, i didnt cry yesterday so that was a step forward for me. Lola x

Faith, I'm sorry you're seeing an increase again. Sounds like you're onto something with the corn. To the OP: I have been where you are, just 2 years ago. We ruled out PANDAs, then I start thinking about it again, then I rule it out again. Sigh, it's been a tough 2 years. You've gotten great information from Carolyn and the others and I just want to add 1 thing. When you start trying supplements, try 1 at a time. Let his body get used to it, observe the results, and keep it in your journal. So, starting with B6, magnesium, or mag taurate are all good places to start. My son's biggest problem is anxiety and stress. So, the tics increase for him in stressful(both good and bad) situations. So, he'll tic more near the end of the day as he gets tired, or when he's getting in trouble for something, or when he has a tennis tournament that day, etc. You may want to keep these things noted in your journal, as well. Good luck! Just know that you're not alone. This place has given me hope and I've made some great friends along the way. I've even been lucky enough to meet with Carolyn and CSP in real life! Bonnie Hi Bonnie, i think i feel the same way you did, i cant quite accept he has tourettes until the PANDAS route has been ruled out but its very difficult here in the UK to find people who even know wht it is. This forum is where I have been getting all my information from. It is so tempting to give him loads of supplements and have him on a vegetable and water diet,lol! i just want the tics to go away overnight. I think my sons tics sound similar to your sons, when he is trying to tell me something exciting he starts with the vocal tic, its like he cant get the words out quick enough. everytime he talks about our recent holiday to florida he starts to tic, he is so excited talking about the rides. i thought that only bad stress would make him tic. the strange thing is if he is upset or crying his tics stop, he was being naughty the other night and the whole time I was angry at him he didnt tic at all, then when he was crying afterwards he didnt tic. i find this strange. My partner keeps reminding me of all the success stories on this forum, this gives us hope. Compared to 4 weeks ago our son has improved so much its unbelievable, when we came back our holiday he couldnt string a sentence together without ticcing constantly, now his tics have calmed right down. I had a meeting with the school to tell them about his diagnosis and the teacher said she hasn't noticed a thing. she said nothing has changed, she hasnt heard him tic and his school work is just the same. Again, I found this very strange, either they are not paying attention to him or he only does it when he leaves school. trying to do homework with him at night is hard work!! thanks again. Lola x

Hi there, we are just back from a trip to the US so i doubt very much if we will be able to go back anytime soon, to be honest we are terrified to take our son back on an plane after our last experience. I do regret not taking him to hospital while we were in florida because maybe then somebody could have tested him for it, it certainly seems to be better known in the US. I had contacted Dr Cunningham a couple of weeks ago regarding our son, she said that her study was closing that week but if I could get his blood to her by the end of the week she would include him in the study, there was no way i could have organised for bloods to be taken and shipped to the US within 3 days. I wouldnt even know where to start doing that. My GP seems willing to help anyway she can so if i find somebody willing to test in the UK im sure she will know of a way to ship the blood to them. Ill email G Giovannoni just now. Thanks for all your help, I really appreciate everybody responding. Lol x

Hi there, thanks for the info i will look into this. I spoke to my GP yesterday, she has never heard of PANDAS but she said she could see what their lab would test for and get back to me. The problem is we have to wait months for our appointment with all the relevant consultants, its very frustrating because I dont know if they will help us investigate for PANDAS or if they will just fob us off. I need to follow up on some of the contacts people here have suggested. I had already emailed pandasnetwork and she gave me a contact but again it was in the US. Thanks for your help.

thanks vickie, we can try the ibruprofen and i will ask the gp tomorrow about testing his titer levels.

Hi Faith, OMG it is comforting to hear somebody say their son does the same things with clothes. he has wrecked so many shoes by pulling the velcro straps so tight that they snap. he will only wear 2 pairs of trousers over and over again and during the summer he only wanted to wear the same pair of shorts every day. it is about 8 degrees here in scotland and he would still go out in shorts. i have given up buying him the cool trendy clothes because they just lie in his wardrobe, elasticated waists from now on. he cant tie laces yet so god knows how that will go. im just laughing at the "too much hair on them" statement, i havent had that one yet, lol! Lola x

We live in Scotland but would travel anywhere within the UK to help him. We would travel anywhere in the world to help him but I would rather try and see if somebody closer to home first. He was on penicillin, that is what the doc usually gives him for his throat/ear infections. Its hard to say if the penicillin helped his tics over the past few years because he only had a very minor tic for a few years, it changed and im sure sometimes it stopped, we weren't overly concerned at that point because we thought he just had a bad habit. He has always had a major clothing sensitivity, and I mean major, some mornings i was lucky to get him to school because he was going crazy that his trousers were not tight enough, he used to wear a belt every day and pull it so tight round his waist it must have been uncomfortable. His shoes also had to be pulled really tight. He still has major issues with clothes and was particularly bad while we were in florida. when i said there was improvement i meant with his sore throat not the tics. I just feel as if while we were on holiday he totally changed, his tics were so loud that people were staring, he was getting distressed about them, he was really lashing out at us too. Now he wont go to bed without somebody with him, he has evening and morning rituals when saying goodnight and when going to school in the morning. I really feel that his personality has changed. He ran off in the wrong direction the other day, turned and said to me, "Mummy, that little noise that I make is making my brain do different things from what I want to do." This scared me as he has never done anything like that before. I havent tried ibruprofen yet but I can certainly give it a bash. Is this known to help kids with PANDAS? I could ask my GP about getting his titer levels checked, that is assuming they know what to look for? Is this quite a straightforward test? This big flare up of tics was a sudden onset but prior to that he had little habits (so we thought), nothing major though, just a little nose clearing noise initially which changed to various little noises but he only had one tic at a time. On holiday last month his arms were tensing, eyes flickering, tummy pulling, growling loudly. Things have calmed down now to a little gasp followed by a throat noise while pulling his tummy in and out. in the evening when he is tired i can see his mouth starting to twitch a little. We have made a lot of changes to his diet and supplements etc so I dont know if this is whats helping or if this would have happened anyway. Friends and family keep saying its probably just the excitement of being in Florida, surely excitement wouldnt cause his tics to go so crazy? Lola

Hi Deanna, he had a throat swab on 26th Oct when we returned from our holiday, the results were clear. His course of penicillin finished about a week before then, while we were on holiday. Lola x

My 7 year old son got diagnosed with TS 3 weeks ago, I have been reading this forum ever since and have made changes based on all of your suggestions, i keep thinking things are getting better and then he starts ticcing again. I noticed him making a nose clearing noise when he was 5, the docs reckoned it was just a habit, that then changed to him pulling his tummy in and out, that changed to fidgeting with his privates, that changed to him licking his fingers, that changed to a throat noise and on a recent family holiday to Florida his tics went crazy. he started making a loud growling noise alongside his throat noise, by the end of the 2 weeks he was stopping in his tracks to tic and his body was doubling over. the lastnight of our holiday we were at disney and he started complaining about his "habits" next thing i could see the whites of his eyes as his eyes flickered all over the place, it was terrifying. he was awful on the plane home too, the air hostesses were asking me what condition he had. we got him to the doctor straight away when we came home and got an emergency appt with a pediatrician who diagnosed him with TS. I can honestly say at that point we had a completely different child sitting in front of us, his behaviour was terrible, it had got so bad on holiday,he was hitting us and running around constantly. We have cut sugar and dairy from his diet, only let him watch tv at the weekends, the same for xbox. started him on magnesium, pro-biotic with multi vitamin, candida clear (somebody recommended it on this forum), he is taking a jan de vries essence too. I am trying to get him allergy tested but am failing miserably, we have a National Health Service here in the UK so its not easy to get appointments for things like that especially with a TS diagnosis. I took him for a VEGA food sensitivity test today which showed oranges, tomatos, sugar, caffeine, dust, chocolate, tatrazine. I dont know how accurate these tests are? I keep reading about PANDAS and wondering if it could be this, there is no family history of TS but we all have suffered from strep. my son had tonsilitis the week before we went to florida, he has had throat and ear infections every year for the past 4 or 5 years. I feel totally out of my depth, myself and my partner feel that we have nobody to turn to who will help us investigate all the things you guys suggest. our NHS probably wouldnt carry out all the different blood tests for heavy metals, minerals, deficiencies etc. We are devasted that our little boy has this condition and I am terrified where it is going, how bad it will get. To the people on this forum who have their kids tics under control, do your kids not tic at all now or are they just mild? Also are there any UK members who can recommend a specialist who can help us? any help or advice would be most appreciated, we are desperate to help him. thank you.

Hi EAMom I think the doctors here know even less about PANDAS than in the US, the only place that seems to test for it is the US. We found a place in the UK but is about a 7 hour drive from where we live in Scotland, that didnt matter we would still have done it. I found out yesterday that the stopped testing for it because the company they used in the US stopped carrying out the test, so it looks like the US is the only place testing for it. I will certainly ask the doc about testing all of us for strep, im not sure what the 72 hour culture is but Im sure our GP will. Thanks for all your help. Lola x

Hi Carolyn Thank you so much for all the information you have provided, I will certainly start him on the B6 and will ask his GP about the NAC. I was worred that maybe the VEGA test wasnt very accurate but from what you are saying these foods are all high in histamine, that would certainly make sense. Although he doesnt neccessarily eat an abundance of the foods he tested sensitive too, she also said to avoid anything red in colour, he eats a lot of raspberries and strawberries so I will certainly cut those out and see if i notice a difference. I have been keeping a diary of his food and tics for 3 weeks since he was diagnosed and so far I cant see any real patterns. some days he wakes up and his tics are worse than the day before and we dont know if it is something he ate the day before or if its because we let him play his xbox for an hour the day before, I feel as if we are looking for a needle in a haystack. maybe over time we will see more of a pattern emerging. the only thing I can see is that his tics have reduced since our holiday, when I ask him if anything makes his "habits" (as he calls them) worse, the only thing he says is "the sun". I dont know if this could be the case or if he is just associating his tics with the florida holiday. bearing in mind we live in scotland where we dont get a lot of sunshine. I will go and read all of your links now. Thanks again for spending so much time responding to my post. Lola x

Thank you, It was the longest 9 hours of my life, the fact that we didnt know what was wrong with him made it worse. I suppose now that we have a diagnosis we at least know what we are dealing with. Although I dont think I have quite accepted that he has TS, I cant accept it until I have ruled everything else out. I will speak to his GP this week and see if she would prescribe some anti-biotic, although I doubt it as he isnt showing any symptoms of throat infections etc. Thanks again, Lola x

Hi Faith thank you for responding. The doctor who he sees is his GP (General Practicioner), the way our NHS service works is you see your GP and if the GP feels the patient needs to see a specialist then a referral would be made to the relevant specialist, this can take months. He has never seen an ENT consultant yet. when he has tonsilitis or ear infections the doctors dont usally take a throat swab they usually know because his tonsilts are all white spots and he runs a high temperature. with the ear infections they just look inside his ear. usually he gets prescribed penicillin and the infections clear up over the following week. when we returned from florida the doctor took a throat swab to test for strep and it came back clear, he had just finished a course of penicillin when we were on holiday so that probably cleared any infection. I have an appointment on Thursday to see his GP so I will ask about ASO and anti Dnase titiers, i dont have a clue what that means but maybe his doctor will. Our doctor wouldnt prescribe anti biotics unless there was an infection present but I'll certainly ask her again. Thanks again for your help. Lola x

My 7 year old son got diagnosed with TS 3 weeks ago, I have been reading this forum ever since and have made changes based on all of your suggestions, i keep thinking things are getting better and then he starts ticcing again. I noticed him making a nose clearing noise when he was 5, the docs reckoned it was just a habit, that then changed to him pulling his tummy in and out, that changed to fidgeting with his privates, that changed to him licking his fingers, that changed to a throat noise and on a recent family holiday to Florida his tics went crazy. he started making a loud growling noise alongside his throat noise, by the end of the 2 weeks he was stopping in his tracks to tic and his body was doubling over. the lastnight of our holiday we were at disney and he started complaining about his "habits" next thing i could see the whites of his eyes as his eyes flickered all over the place, it was terrifying. he was awful on the plane home too, the air hostesses were asking me what condition he had. we got him to the doctor straight away when we came home and got an emergency appt with a pediatrician who diagnosed him with TS. that was 3 weeks ago and we havent had any further appointments to see anybody, if it wasnt for ths forum i wouldnt know anything about it. We have cut sugar and dairy from his diet, only let him watch tv at the weekends, the same for xbox. started him on magnesium, pro-biotic with multi vitamin, candida clear (somebody recommended it on this forum), he is taking a jan de vries essence too. I am trying to get him allergy tested but am failing miserably, we have a National Health Service here in the UK so its not easy to get appointments for things like that especially with a TS diagnosis. I took him for a VEGA food sensitivity test today which showed oranges, tomatos, sugar, caffeine, dust, chocolate, tatrazine. I dont know how accurate these tests are? I keep reading about PANDAS and wondering if it could be this, there is no family history of TS but we all have suffered from strep. my son had tonsilitis the week before we went to florida, he has had throat and ear infections every year for the past 4 or 5 years. I feel totally out of my depth, myself and my partner feel that we have nobody to turn to who will help us investigate all the things you guys suggest. our NHS wouldnt carry out all the different blood tests for heavy metals, minerals, deficiencies etc. We are devasted that our little boy has this condition and I am terrified where it is going, how bad it will get. To the people on this forum who have their kids tics under control, do your kids not tic at all now or are they just mild? Also are there any UK members who can recommend a specialist who can help us? any help or advice would be most appreciated, we are desperate to help him.