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jules41

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  1. Hi My son had a sudden onset of tics, slight dystonia, mood liability and night fears. No frequent urination or any of these other symptoms that you mentioned. WIth anitibiotics he gets 90% resolution and there are only very mild tics left. He does however seem to get increases in tics about every 3 months along with some of these other symptoms and again they resolve about 90 - 95% when he is put onto antibiotics. We have never tried anything else yet as this regimen is working for us currently but it is usually about 5 days before I see a symptom resolution. There is no other neurological diagnosis and my specialist said that in all the years of treating PANDAS, tics and TS my son's symptoms are one of only about 4 or 5 children that he believes are truly PANDAS. It is difficult to know if this is the case as this is just his perspective. He does work in PANDAS research and his specialist area is movement disorders with a focus on infection exacerbation. I am curious if our PANDAS children are a small subset of children with tic disorders or if it is just easier to diagnose if the traditional onset is recognised with positive strep diagnosis at the first symptom exacerbation. It did take 3 months of different doctors though before a strep test was done which came out positive and then when ds was put onto antibiotics that was when we started to see symptoms resolve. I am worried about long term use of antibiotics though. Pandas 16 - were you on antibiotics long term and are there any residual problems associated with your long term treatment?
  2. Swim Thank you for your response. My son is almost 10 and weighs about the same as your ds so I am wondering if the 250 mg is too low a dose for prophylaxis. He hasn't always been on Keflex prophylactically - initially he was on 250mg abocillin daily with the 1000mg Keflex reserved for increased symptoms due to strep exposure. Our specialist felt we should keep the Keflex as treatment as we knew it worked and not use it prophylactically as he didn't want son to build up resistance to it. When he however built up resistance to the penicillin my GP suggested the prophylaxis of Keflex. Part of me is wondering if I should take the route you have taken and keep him off the antibiotics altogether and only use when he gets a symptom flare. I am worried whichever decision I make it might be the wrong one though. I think I will keep him on the prophylaxis for another 12 months and then take him off altogether. Have your son's symptoms got worse or are they reasonably stable? My son's have never been as bad as they were at the first outbreak and he really has only had about 4 outbreaks since but the tics have never fully resolved. When he first went onto the antibiotics there was a 6 month period where everything was so mild had I not known he had tics I don't think I would have picked it up. At that time I thought everything was going to go, but then he got another strep infection and we got a flare. It's a constant worry isn't it. Best of luck to you and your son for the future. Jules
  3. Hi all For those whose children have been on Keflex can you please tell me what dose you use as a treatment dose and also the dose that has been used prophylactically? My son has been great with Keflex 1000mg being prescribed when he has a breakthrough but he is on 250mg a day prophylactically and seems to get a breakthrough on average every 2 months. When he does he goes on to the full dose and things usually clear up in about 10 days. He does always have low grade tics though. I am concerned that this cycle is not ideal and wonder if we should be using a higher dose as a prophylaxis. Feedback from others would be appreciated. It was 2 years ago now that he got his first big breakthrough and although it is being managed I am wondering if this will ever go away. It is hard to know how other children have fared as it seems that people just stop posting after a while. Does anyone know of children who have had this and it has resolved after puberty as I have been advised is often the case? Jules
  4. Yes. My son's gait changes when he gets a symptoms flare up. He twists slightly to the side, bends over and his foot turns in also. I don't think he has ever walked quite the way he did before the onset of PANDAS at 8 years old. Before he was really sporty and had great posture. Now he always looks a little awkward and is less sporty. It is markedly different though when he gets a flare up of tics.
  5. My son had them when he was 6 years old. Both sons got them but only the one who now has PANDAS had them badly. They took about a year to go away. My other non-PANDAS son had about 3 spots and they went away in a few weeks.
  6. My son was diagnosed as having PANDAS July 2009. This is now 18months into treatment and he takes Keflex 1000mg dails (500 x 2) every time he has a flare up and is on 250mg daily erithromycin for prophylaxis. I am not sure that the prophylactic treatment works though as he keeps getting breakthroughs although never as bad as the first onset. My son's most troublesome symptoms are the tics but he also gets tummy pains, rash, anxiety and night fears when he has a flare up. His gait changes also and he walks very stiffly with his foot turning in slightly and his body slighly tilted. Usually when he gets a flare up after 1 week of full dose Keflex things are mostly gone (always low lying tics since this started though) but this time he has taken Keflex for 9 days and tics are still there. I hope we all have a day when we look at our children and this is all over but I am not sure how many children truly do grow out of this. My doctor said most will be relatively tic free after puberty but from reading on here I am not sure that this is true. On a positive note however, my son was top of the year academically this year and is being awarded a prize for his academic achievements so maybe all the supplements, healthy diet etc is working on aiding with focus and concentration. Good luck to all.
  7. Hi Did you ever find out what was causing your son's pains? My son had these for 6 months and was then diagnosed with strep and PANDAS. 1 week after starting antibiotics his pains stopped. That was 2 months ago and he has never had them since. Still has tics though but all other symptoms cleared up really quickly.
  8. Hi everyone I have not been posting on this site for a long time as we have moved country and been extremely busy setting up home overseas. My son started ticcing very suddenly on the 31st March this year along with a cough, severe tummy pains and a rash on his body. I took him along to the doctor panicking as I was convinced that these symptoms were all related. I was told that they were not related, he had transient simple childhood tics brought on by stress, a cough with sore tummy probably linked to the cough and a fungal skin rash which I was given an antifungal cream for. 2 weeks later I was still not happy so took him along to a neurologist who also diagnosed him with transient childhood tics and said not to worry that they would disappear when we moved to Australia from Belgium and he settled into his new school. He felt that these were relatively common in childhood and should disappear relatively quickly. At the time he only had facial tics. Everything did seem to be settling down and I felt that the tics were going away - really mild and infrequent although still happening every day so I stopped worrying quite so much. I moved out to Australia and about 2 weeks later they got much worse again and his walking posture changed. He was walking with a slightly twisted torso and hen toed. His tummy pains were worse and he was scared to sleep at night in case aliens came to get him. This is from a boy who was in gifted classes all through school, played excellent sports, has loads of friends, never had a tic prior to that and was, if anything, told that he was overly confident. My son has changed so much. When I came to Australia I managed to get an appointment with a paediatrician who tested him and found that he was positive for strep on the throat swab she did as she felt it sounded like PANDAS and also the blood tests showed elevated titres in all counts. He was put onto antibiotics - cephalexin - for 10 days and improved considerably. He has not had another sore tummy since and they were severe and constant for 5 months and he can now sleep easily at night. He came into contact with strep again 3 weeks ago when friends came to visit with a daughter who had strep at the time and his symptoms flared up 3 days later so he was put onto a 9 day course of Azithromycin 500mg and now Azith 250mg for 18 days. The problem is that his tics are not going away and I heard that if it was PANDAS they should go within a few days of being on the medication. He has been on Azith for 14 days now. He now has a throat clearing tic and an eye rolling tic although he is walking properly again and his body discomfort seems to have gone totally. Does this sound more like tourettes now or is it just going to be harder to treat as we were not diagnosed for the first 5 months. I am unsure what to do next and feel so unhappy. We have eliminated rubbish from his diet - although we did eat very healthily anyway. Trying to follow Failsafe as much as possible. Along with the antibiotics he is taking probiotics, magnesium, taurine and I did try L-Carnitine but have now taken him off it. I have been advised against Calcium as it can interact with the Azithromycin. Please, any suggestions would be appreciated. Hopefully one day I can help someone else. This is now 6 months on and his tics change constantly although never go away. He usually has 2 - 3 at the same time but 1 is dominant and the other 2 are very infrequent. The dominant tic changes every few days. it is starting to sound like tourettes. No-one in the family has any history of tics as far as I am aware - certainly not in the immediate family. Sorry this is so long winded. Thanks
  9. Thank you Shy. I hope it all works out for both of us. They are still young so hopefully it is something that their bodies will adjust to as they mature and one day it will just be a memory. J
  10. Thank you Carolyn I really appreciate the time you put into putting together your response. I am not too keen on the idea of using collodial silver - I did buy it once when my son had molluscum contagiousum as I had read that it was effective for that but I then read so many negative reports that I threw everything in the bin. I will try the grapefruit seed extract although I have no idea where I would get it here. I live in Belgium and find it extremely difficult to buy natural remedies anywhere - if they are around I usually cannot understand what to do with them. I am moving to Australia next month so hopefully it will be much easier to get everything I need to look at treating this disorder if it persists. My son did seem to be much better at the beginning of the week but then yesterday and today he has been really agitated, his tics are stronger again and he seems to be displaying different behaviours. That is the part I am finding really difficult to deal with. He seemed to change overnight in his personality. He was the most easy going, laid back, intelligent and articulate boy and now he seems agitated, twitchy, cannot concentrate, moody, overly sensitive and does not pay attention or understand what is being asked of him. Really concerning. One day I feel positive and the next day I just want to cry for the boy he was. It sounds terrible I know but I am really struggling to deal with these changes. All the feedback is very helpful and I hope it is just a matter of time before I put things into perspective and together we deal with the changes and he has a happy childhood and adulthood. J
  11. The rash was shiny, lasted for 4 months and the doctor said that it was a fungal infection and gave him an antifungal cream which has more or less cleared it up. He had the rash around his neck and a tiny little bit on his face, also on his chest and on his tummy. Thank you so much for all your advice. It is amazing how helpful people are.
  12. Thank you. I may ask the doctor to check for any possibility for strep throat. If it is strep throat it would mean he has probably had it for a few months. Would it still be detected or do you think it would be too late now?
  13. Thank you Faith. He did seem to get it suddenly - and things seem to change alomost daily. I notice that the tics are worse after collecting him from school. Although he had a sore tummy and the fungal infection he did not seem sick at the time or I would have taken him along to the doctor. I did think about PANDAS after reading the posts but he didn't have a sore throat. I do remember once when he was about 1 1/2 years old he had a funny thing that he did where he seemed to go into a little trance. At that stage I took him along to the hospital thinking it may have been petit mal seizures but they checked him and the neurologist felt that this was his way of processing memory and information of the day as it always happened at night. He said not to worry and it did go away after about 4 weeks. There has been nothing since - for 5 years - and now this. I really do feel worried. Is it possible for transient tics to have come on so suddenly and with changing tics. That sounds more like tourettes. I really do appreciate everyone's support on here. It is an incredibly useful site. I guess I would like to hear about people who have been in this situation where their children got tics and then 3 months later it is gone but everything points to multiple tics being longer lasting. J
  14. Hi all I have been reading this site for the past 2 weeks and have found some of the information really useful. I am wondering if any of you could help by providing some feedback on queries that I have regarding my son. In January this year my son was complaing of a really sore tummy and was crying going to bed at night because of the pain. He is generally a really healthy active boy - has had about 2 days off of school sick in 4 years so this was unlike him. I was a little concerned about it but he seemed fine during the days and didn't want to go to the doctors so I let it go. A couple of weeks later a rash appeared around his neck and on his tummy but we were travelling out to Australia to have a look at houses and schools as we are moving there from Belgium so I didn't bother taking him to the doctor as it didn't seem to be bothering him and I felt it didn't look serious. Whilst in Australia for a 3 week visit he had interviews at 5 schools - pretty stressful - and we looked at houses, had medicals carried out etc. We returned to Belgium on Friday at the end of March and he went back to his current school on the Monday. He is 7 years old - due to turn 8 next week. When I went to meet him from school - he was playing hockey - he was having neck tics. I had never seen this before and didn't recognise it but was really worried and concerned. I kept telling him to stop it but within a week the tics had progressed to include facial grimaces so I took him along to our doctor. He felt that it was nothing to worry aboutand was probably the stress of moving so I should just ignore them. I was not happy though and made an appointment to see a Professor of neurology. I took him there and they ran tests but he also feels that they are transient and should go. There is no history of tics in either my husbands or my family and my son has had no previous behavioural issues. He is actually very bright and is in a gifted and talented class. My worry is that the tics have now progressed and he is also displaying vocal tics - he is doing a mouh pouting and sniffing tic also. My son hates them and I notice that in the last month his confidence and behaviour has changed considerably. I asked the doctor if he felt that there could be a link between the tummy pains, rash (it was diagnosed as a fungal infection and he has been given an anti fungal cream to treat it) and the tics starting. They all came at the same time. Jet lag and stress may also have triggered things. He felt that it was not related at all and that this is simply transient childhood tics. I am worried that it is now looking like tourettes. Please, any advice would be really appreciated. I am so upset and like all of you feel physically sick every day. I am so worried that this is going to get worse and it could be lifelong. He has had nothing before. I have started him on Magnesium, multivitamins, Omega 3 and reducing dairy and additives etc. We always eat reasonably healthy anyway and he is usually very active playing so many sports daily. Since then he has not wanted to go to any of his clubs and I have not forced hime. I feel that my son is changing. Sorry that this post is so long but I really do need to talk and get some feedback. (My husband has already left to start his new job and the boys and I move out next month so that is also stressful. We are moving to the other side of the world, new school, friends, home etc and they don't have their Dad at the moment). Could it be stress related. I know that most information suggests that stress can't cause it only exacerbate symptoms. Thanks
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