cloudy

Hi Kevin Thats great news! Long may it continue. Thankyou for keeping us updated - its wonderful to hear good news and the improvements you've seen! Cloudy

Hi Just want to pass my best wishes onto you. As you know it waxes and it wanes - it will get better! JDmom - I so know what you were going through - I too had to go onto the Anxiety medication just to help me get through the day! Happily, I too am off then now and just taking each day as it comes. They are still our perfect children.

Hi Thanks for your response. Yes, DAN is a good way to go - I havn't thought of that. My DS has no other problems except the tics. I just thought it strange that his bloods had tested for strep a couple of months ago - after a cold. And a week after Shingles his tics have come back which made me think of PITANDS. Is it right that PITANDS could be a cause after any infection not just strep? Are there any Mums out there whose children have PITANDS rather than PANDAS? Cloudy

Hi, I posted quite a while ago on the TICS forums. But I am wondering if now my son's tics could be caused by PANDAS or PITANDS. He has never had a really sore throat or any throat swabs to confirm. My DS 9 had quite a few tics starting August last year with eye blinking, throat clearing. Things did improve and we had a good few months from April till about June this year when the eye blinking came back for a couple of weeks. He had just got over a cold - no sore throat. Our doctor ( we are in the UK - no PANDAS specialists here!) did a blood test and his ASO titres were 400 IU/ml and his anti-DNase titres were 383 U/ml. His serum ferritin (Iron) was low at 20 ug/L. Our doctor mentioned that although he didn't believe the tics were caused by strep they could have aggrevated his tics. This is the first time I thought about PANDAS. The tics lasted 2 weeks in June then cleared up. Our doctor prescribed Penicillin (250mg 4 times a day for 7 days then 250mg once a day for 3 months). However, after 6 days of the Penicillin my son came out in a rash which I thought was a reaction to the drugs but the DR said it was shingles!! Shingles didn't bother him overly, but 7 days after the Shingles his eye blinking tic has come back, he is now only taking 250mg Pencillin per day. The DR didn't think the Singles had anything to do with the Pencillin but I was wondering if he has really low immunity. The DR believes that my DS has had a very stressful week and that could be why the tics came back. They came back suddenly, on Saturday morning. He has just got over shingles, had 2 dental appointments (he hates the dentist and has quite bad teeth and may need fillings), an orthodontist appointment and school is starting in just under 2 weeks. My son has also always suffered with aching legs and arms at night since he was about 3 years old. We have seen various doctors and they have all said growing pains. Any advice would be welcome. He has no OCD or other symptoms, just the tics. They came back suddenly. I just hope they go awaya again as we had a bad year last year and I don't want to go through it all again.

Hi there You don't mention whether you have ever suffered from tics before? Before you start worrying too much I would visit the opticians to get your eyes checked out. Also, the fact you are feeling discomfort in your eyes could indicate allergies. Good luck

Hi There was a news story here in the UK a few weeks ago to say that Zinc could help cure / prevent the common cold. I don't know what dosage you would have to use but it might be worth putting it in a search engine. Good luck Sal

There are also stories of the full moon in the UK papers - supposedly the moon doesn't get as clear as this very often. When I read the article I thought of this website as I had read that it can affect tic severity. I hope not.

Hi Patty Whats CST? Thanks

Hi Kim I presume the meds worked? What ones did he take? I have to say meds scare me especially as the doctors seems quite reluctant to put kids on them due to side effects. However, if I need to I will also resort to them. We have to do the best for our children. Sal

Thats great news Megan. What a relief! I would love to try the no TV but just can't see it happening. My DS loves TV - he doesn't watch it too much but is an avid soccer fan and likes to watch the matches. Best wishes. Sal

Hi All I have been reading these posts with interest. I tried dairy free with my DS but it didn't make much difference. We are on organic as much as possible, omega 3, Natural calm and do Epsom bath salts. I had though my DS tics ( sniffing, grunting) and eye blinking were calming down slightly as I sometimes saw him eye blink only once or twice a day. However, in the last couple of days we have seen an increase and change in the eye blink so it is now more exagerated and with a slight head nod at the same time. I really don't know what else to try! My DS is 9. Have you seen a peak yet in the tics yet relating to age? Speaking to numerous doctors they all say that tics decrease with age. Just hoping we will be there soon. Sal

Hi I have switched to Rapeseed oil. That is naturally high in Omega 3,6 and 9. It tastes okay.

Hi Stuart I live in the UK - a bit far to travel. I would be interested if you had any clinics you could recommend over here? Thanks

Thanks Chemar and Mythree I have spent the weekend trawling through old posts. It is quite humbling to see what other parents have been through in the past and hopefully are no longer experiencing now. I hope we will all be in a better place in the next couple of years. It is very disheartening to try diets ( in my sons case dairy free for the last 3 weeks) and the tics have got worse! I am now going to try gluten free. I am finding it quite hard at the moment. Sal

Hi I recently took my son for an allergy test (skin prick) and you are right - he was anxious and did tic. But I am glad we did as he showed up for dust mite allergy which he didn't 3 years ago. You just have to reassure your son. It doesn't hurt and doesn't take long. However, as you probably know it doesn't really test for a lot of the food intolerances which might be subtle. Good luck in reaching your decision. x

Hi Ladyd I know how you feel! I have been watching my son and some days I only see a couple of tics and think - hey, it might be going. Then the next day I see loads. We have been off dairy for nearly 3 weeks to see if it helps the vocal ( sniffing) but in the last couple of days we have had a little grunting ( like clearing the throat) so I don't believe eliminating dairy is making any difference. The next thing we are going to try is gluten free to see if that makes a difference. We are still doing Kids Calm, Epsom Salt baths and Omega 3. I have bought a stronger Omega 3 but can't get him to take this as it tastes horrible so we are still on the off the shelf kids one. Good luck and keep trying. We will get there in the end. As I said in a previous post - whatever happened to the old posters? This forum has been going since 2003. There must be a lot of success stories in here. Keep Positive

Hi Sorry to hear you and your son are having a bad time. Have your son's tics got progressively worse in the last year or do you find they have declined at all? I too am wondering about peak years. Some of the web sites I have looked at have said that tics peak between 10-12 and others say it is the teen years. I think the real answer is nobody knows and each person is different. Many experts say that some children "grow out" of TS or if not then it does get milder. Having read most of the threads on here from the last few years I was wondering if there are many happy endings or when things get better people just stop posting. Any ideas? With regard to your current troubles, perhaps keep your son away from facebook. I think horrible stuff gets written on there to all sorts of people. You are lucky in the fact you home school. You son might be tougher than you think - if he plays in tennis tournaments he must have confidence. Take care

Hi there Sorry to read your update. It could be transient and pass. We saw an Allergist at the weekend who confirmed that although my son wasn't allergic to milk products as such, it still might be worthwhile taking him off Dairy as it is a big mucas producer. He is a big milk and cheese fan. So far we are a week and a half into this and although no change as yet he is in the middle of a cold. Hang in there. At least you know all the right things to try. Sal Ps - Quick question - you said your daughter started to have OCD type tendancies, has she never had these before?

Hi Kevin Well done with your blog - don't give up. My DS sounds a little like yours - we just seem to have nose puffing (like a reverse sniff) and a bit of an eye roll or eye blinking. Some day we don't see much, others are a bit worse. Good idea about the hydration - like your son mine doesn't drink much either. I will give that a go also. Good luck with your efforts. Sal

Hi there We seem to have had quite a quiet Christmas on the tic front. I hardly saw my DS (9) tic at all. He still had the nose exhalation noises he was making but only saw the eye blinking perhaps once or twice a day or not at all. We went to an Allergy specialist on Saturday who confirmed my son was allergic to dustmites. However, we already try to keep the house as dust free as we can. The Allergy Specialist also suggested cutting dairy out which we have done since Sunday. However, both yesterday and today I have noticed a considerable increase in tics. He appears to be puffing out of his nose, nodding his head and blinking all at the same time. I feel very upset as I thought things were improving. I was wondering if cutting out the dairy could be causing the increase - he did drink a lot of milk and ate cheese most days in his school lunch. I have been giving him Kids Calm, Omega 3 and Epsom bath salts every day since about November. I thought they were helping. Wondering if this is just the wax and waning nature. I was also thinking of stopping the Kids Calm and moving onto a pure magnesium supplement - any good ones you can suggest as I know there are lots of different type of magnesium?

Hi I have been doing Natural Calm, Omega 3 capsules ( I have bought a higher strength syrup but the taste is awful and can't get DS to take it!) and Epsom Bath Salts. If you get a good multi it may also have extra magnesium in it.

Lots of MSG!

Hi there It is really good sometimes to revisit some of the older conversations to find out how certain children are doing. I really feel for you and so know what you are going through. I am trying hard to be cool and relax around my DS and not make it a big deal. We are only taking Omega 3, Kids Calm and Epsom Bath salts and I did think the eye blinking had eased but he started back at school and I noticed a bad bout after I picked him up. He has about 6 bad blinks and then nothing for the rest of the day. We are supposed to be holidaying in Orlando at Easter but I feel so down I don't want to go! Like you, I pray most nights and wake up in the morning wondering if today is the day it goes and I don't hear any sniffing or see any blinks. However, I don't think it helps when we actively look for tics - all kids twitch their noses, shrug their shoulders etc. I know for me I must learn to relax. Best wishes to you Sal

Hi there That sounds really positive. Just a couple of questions. What sort of tics does your son have? How do you manage to get your son to take the fish oil? My DS does take Omega 3 but it is a kids one so unfortunately does have sucrose in. Sal

Hi there and welcome I have looked into the gluten free diet but we live in the UK and it is not that easy here. I have cut out all E numbers and trying to cook all organic meat and veg. With regard to the gluten free - what about bread? I have seen in the supermarkets here some vacuum packed bread and rolls - havn't gone as far as buying them yet - is there much difference in taste? Best wishes Sal