KelC

Thankyou all so much for your replies. I have taken all suggestions on board. Thanks for helping me to put things into perspective...sometimes that is just so hard... I am constantly questioning my objectivity and that is exhasuting! Ptcgirl thanks so much for your advice....it's so nice to hear someone say they get it...This whole thing has been heartbreaking for us and it's so much more difficult when no one has any idea what you are going through...try as you might to explain it. I will try again to have the doctor check for other infections, however this in itself is an uphill battle....it was hard enough just to get his nose reswabbed..the dr thinks I am clutching at straws (or mad - or both) My problem is that the dr doesn't have time to do all of the reading that I have done so he knows nothing about this stuff...however when I tell him about it he frowns upon my collecting (what is often anecdotal) evidence off the "dreaded Internet". I print out studies for him to read and I know he doesn't read them. I am grateful that he is investigating the ivig and because of this I can't push too hard on the other stuff. He has said that we might be able to get one or two rounds of ivig but because the results will not be easily measurable that we shouldn't expect that if we do get it that it will be ongoing. When you say ivig's how many are you talking? Do you do them regularly? Thanks again to everyone for your input...it's very much appreciated.

I apologise in advance for the length of this post.... I would really appreciate any input at all. My DS10 has been in a severe flare up of his pandas since late December. He had been on prophylactic azithromycin and doing well since early September (about 80%). Just before Christmas my other two kids contracted pertussis. Being as DS was on the azith he was covered against the whooping cough. However he started to become symptomatic (severe anxiety and ocd among other things) a couple of weeks after they became ill. The summer holidays (I'm in Australia) have been a nighmare... DS was worse during January than we have ever seen him. We were close to hospitalizing him. GP changed from Azith to augmentin fearing that he had become resistant to the azith. We also had three weeks worth of prednisolone. Nothing worked. The prednisolone has ALWAYS brough him back to us but not this time. Test showed that antidnase had risen again 450 to 570, asot stayed normal at high 100's . But negative strep swab. IGG was low. All else normal. We became desperate and after flying to Sydney to consult a pediatric neurologist we agreed that Lovan (SSRI) was our only option as he was suffering too much. I have resisted this for the past 2 1/2 years and have always found a combo of abx/pred gets us out of trouble. (never more than 80-90% but not enough to want to go for what I personally feel is a bandaid measure of an SSRI) The Lovan is doing its job and the OCD and anxiety have eased. (I'd say we are traveling at around 60%) but there are still many issues going on and I feel as though the SSRI is masking the problem. Which seems to make the drs happy.... DS has had a blocked nose on and off for weeks with lots of bloody mucous. I keep asking the drs why they think this is but because the bloods are all normal (ie show no active infection) they keep glossing over it. So...back in 2011 a nose swab showed moderate staph growth and he was in a flare at the time (it was ignored as lots of people have staph in their nose) . He also recently got a strange rash on his thighs like petechiae ( the one you look for in meningitis etc...scary!!) so at the visit re this rash - as the paed ordered bloods to try to figure out what was causing the rash - I suggested to the him that we swab for staph again. Results: Bloods are all normal and show no reason for the rash except....The swab has come back as heavy growth of erythromicin and penicillin resistant staph. (both of the antibiotics that he has been taking) So paed has given us 10 days of cephalexin. (250mg 3 x daily) We are also in the process of trying to get ivig with some support (although he is skeptical) from the paed and the neurologist in Sydney. My dilemma is now that as he is on the Lovan and showing improvement how will we know how well the cephalexin works?? Or even the ivig if we get it for that matter. Im too scared to take him off the SSRI but really want him off it! I would appreciate any and all thoughts/opinions on any of the issues I have written about here...sorry I know there are a few different topics.... The use of the SSRI, ivig or not ivig, staph as a cause of symptoms? Thanks in advance

Hi, my DS10 has had pandas for the last 2 1/2 years with several ups and downs over that time. We have just recently found a doctor willing to prescribe azithromycin and he hs been on a treatment dose (500mg daily) for the past 2 1/2 months. Initially we had a miracle turnaround, my husband and I were ecstatic with the change. Two of of our other kids were diagnosed with whooping cough about 6 weeks ago and we noticed symptoms starting to fluctuate. Whooping cough has gone and we are now on holidays. A coupe of days into our holiday (about 10 days ago ) symptoms came back with a vengeance..we tried a five day prednisolone burst wifh no change. This usuually works a treat. Giving him ibuprofen like lollies..it's working for a couple of hours at a stretch..tried Pepcid it worked for a few hours. Last couple of days symptoms are out of control. OCD is horrendous. He's in a really bad state (worse than ever before) and I'm not sure what to do next. Stopped the azithromycin two days ago as he was complaining of feeling funny in the chest and this gave me a scare...and it certainly isn't working my more... Won't have access to a Doctor for another 5 days and feeling very frightened right now...and even when we do get to the doc he is being led by us! I have no idea what to do now. Can anyone offer some advice.

Hi, I am wondering if anyone might be able to provide links to recent, well researched papers that discuss the benefits of IVIG for treating children with primarily OCD as opposed to tics. Our Paed.Neurologist here believes that the treatment wont benefit OCD symptoms and I need some credible information to take back to him. Also, I would like our DS to take a prophylactic dose of ABX but doctors wont prescribe more than ten days worth, believing that the abx are only required to treat an active infection. If you know of any recent credible research/paper that discusses the benefits of proph. Abx particularly in relation to their immune modulating effect you please point me in the right direction. Thanks so much!

Thankyou to everyone for your advice... I will take it all on board.... Ozimum - I have been in touch with Robyn Cosford and a DAN doctor and all feedback leads to diet etc. have already done the wheat free, sugar free etc etc. I just believe that the key to beating this thing is so much more than a change of diet. Just got to figure out what that is. And yes... more helpful doctors would be great. The trouble seems to be that because PANDAS is so little known here, they dont really have much info and dont seem prepared to take the time to do the research.. Its much easier to try to prescribe an SSRI.... Sometimes it seems so hard to be objective...about anything! How he is travelling, how effective medications are etc etc. Just spent the last 5 hours researching treatments, and still so confused. Now have lost a day and its time to go and pick up kids from school and hope all the way there that they are both okay when they hop in the car. So tired of worrying..... I guess its important to remember that there are far worse illnesses we could be fighting....just doesnt feel like it right now!! Thanks again for taking the time to reply

Hi, I have a couple of issues for which I would love some input/advice. Firstly - my son - almost 10 - was diagnosed with PANDAS almost two years ago and we have had a long battle with it. Over the last few days - his identical twin brother - who has never had any symptoms at all - has started sniffing his hands constantly - I have noticed it proabably three of four times an hour. He says he doesn't know why he's doing it - and he cant seem to control it. The son with PANDAS hasnt had much of a problem with tics - mostly OCD/Anxiety and Concentration/Attention issues - although there have been some vocal outbursts at times. Could this just be a one off or should I be racing off to the doctor for abx?? I'm so worried for him - he has watched his brother battle this thing - I cant stand to think that they both may have it... Secondly - I feel like we are taking one step forward and two back with my son who has been diagnosed. Our paediatrician - who initially was fantastic - if only for the fact that he diagnosed the PANDAS!! He did send us to a paediatric neurologist - who told us that IVIG would be of no use as it mostly assisted with kids whose primary symptoms are tics and would not likely help the OCD. HAs anyone heard that this is the case... His suggested treatment was abx (we use augmentin - no one will let us try the azithromycin - "its expensive and the Augmentin does the same job") for symptoms of sore throat etc - the most I can get docs to prescribe is for two weeks. And steroids (prednisone) for 5 days. I have been consulting with a pharmacist who is also a homeopath and we have developed a regime of the following in an effort to reduce inflammation and repair/care for the immune system etc. Omega 3, 6, 9 (1500mg fish oil/1000mg flaxseed oil) Multi containing B vitamins zinc etc Vitamin D Astragalus 8 Lysine (just because of its antiviral properties - to try to fight off viruses) Olive leaf extract - 5 mls daily St Johns Wort A supplement called Ultra Bioplex - which contains Cows colostrum - which I have read can have a similar effect as the IVIG on the immune system. Probiotic powder (does not contain strep strain) If we are religious with this stuff it can reduce symptoms by up to 60-70%. However is he has a flare up we are still going back to square one each time - and we are seeing him fall further behind at school and becoming more and more disconnected from his friends. I have been looking into Inositol, 5HTP and GABA and am wondering if anyone has had any success or otherwise with any of these and if so how have they been used/dosages etc. I would also like to try long term abx but I am having real trouble convincing our Docs to agree. They all say that as PANDAS isnt caused by the bacteria then antibiotics cant be of help once the infection has cleared. And of course if they think its viral then they dont want to prescribe abx at all. What I need are some links the recent and credible studies that show that the long term abx are beneficial. I also wonder if there is anything out there about the benefit of IVIG for OCD etc. Also - they dont want to re-check ASO and AntiDnase levels as they say once they are elevated in can take a couple of years to go down and any subsequent results/levels mean nothing. Should I be insisting on these being rechecked?? (they were checked once about 12 months after intitial diagnosis and had come down but were still very high compared to the norm) I know this is a lot... maybe I should have posted different topics for each of my questions?? Not a frequent user of forums so not sure of the correct procedure... Also - I am in Australia - and am keen to hear from anyone else from Australia on this forum! Thanks, Kellie

Thankyou so much to everyone who has replied. To clarify - the 5ml contains the 400mg of Amoxicillin so he's getting 800mg daily (weight around 33kg) I would have thoguht that this was a fairly decent dose. As the doctor was reluctant to try the use of the abx as a prophylactic I doubt that he will agree to an increase in the dose. My son has had therapy for the initial severe anxiety that he had and he has had enormous benefit from it. His therapist left the practice and it was felt that he had made enough progress. As the OCD is now the major symptom - along with the confusion, lack of concentration etc - I wasnt sure that the therapy could be of much further benefit and we felt it was also important to focus on addressing the underlying cause. Has anyone had success with therapy for these trypr of issues. I have told the doctor that I wanted to avoid the SSRI's for this very reason - I dont want a bandaid measure that covers up the problem and doesnt address it. And in particular - doesnt alter his personality any further - we already feel as though we have "lost" who he was. I dont believe that our doctor will consult with a US doctor - I will ask the question however Please dont get the impression that our Paed. is being unhelpful - he is a lovely guy who really wants to help but he has I guess a standard set of information regarding treatment and is understandably reluctant to move outside his comfort zone and take on board information that I have sourced online - particulary when it is not Australian research. Has anyone heard of any doctors in Australia who specialise? One more thing - has anyone not had success with the Augmentin and found success with the Azith.? I will take on board all of your suggestions - Thanks so much again! Off to the doctor in a couple of hours - not sure what time it is there but if anyone could offer anything further to this I would be grateful...

Okay - still working out how this all works - have found your reply Ozimum - thanks so much for your advice