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About jules41

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    Sydney, Australia

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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 neurolo
  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 o
  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. Feedba
  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
  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
  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 Aus
  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
  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
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