HaylesJohnson

Oh wow!! No wonder so many people have it along with other things, it's far too common! I might just get myself checked also to ensure I am not reinfecting DS also. SOOOO much to learn about all of this stuff!

Do you know whether the Myco is like Step in that someone else infected in the house could upset the antibodies, the way a PANDAS sufferer reacts with someone else having strep? I have just been very unwell myself, with a nasty chest infection etc and was wondering whether its worth my while now getting tested for Myco also now that DS has had this positive test?

Thank you. I think it might be time to request testing for Lyme also then. I don't know how much luck I will have with this in Australia however, as there is a HUGE health debate here on whether Lyme even exists here!! I am sure I came across a Lab here who sends out their test kits and processes them in the US, might have to find that one again.

I have been reading quite a lot of literature online about the possible link between Strep and Mycoplasma - is anyone here more familiar with this or understand how this might work?

As someone very new to the world of POSSIBLE PANDAS/PANS - I must say, I have remained VERY conscious of this throughout these past couple of months. I have worried so much that people might think I am doctor shopping, or that I am simply unwilling to accept diagnoses made thus far. For me, I have continued to seek out someone who will just LISTEN to what I have to say about the symptoms and the way this has presented, and be happy to make the connections. Unfortunately though the Pediatrician agrees there is an organic reason (post infection) for SOME of the symptoms, but he still feels there is a need for a Tourettes diagnosis separately - which to me is not common sense, this point alone would make me want to push on and find someone more knowledgeable about these types of conditions simply to ensure my son's health is in good hands. If it turns out to be Tourettes, along with something else, so be it, but I would want to be 100% certain. But let me say this, it is a sad state of affairs when we as parents are worried that seeking out a second opinion and advocating for our child will look to others as though we WANT a certain diagnosis for our children and are unable to stop until we have it - because we all know, that is simply not the case. I do hope this "doctor shopping" attitude from outsiders does not sway some parents to stop searching for answers and following their instincts!!

WE FINALLY GOT ANTIBIOTICS!!!! Poor DS got off to a rough start this morning, severe head pain, very sleepy and almost passed out while walking through the house - I was able to make an urgent appointment with the GP, who told me she had spent all night worrying about the fact that she hadn't just given antibiotics, she tried to get hold of the Pediatrician, however as he is on holidays, the calls went to voicemail - she then phoned a Microbiologist she knows well to discuss DS's case with her. She was going to phone me this morning to pick up the prescription anyway. She also sent him for some more bloods this morning, including one for Systemic Lupus (as it is in two generations of my maternal family), just on the off-chance. She has definitely given this a lot of thought overnight and now I feel a lot more confident with my son's health in her hands! In the meantime, I have given DS Ibuprofen today, but we are under instruction that if he does indeed black out at all to get him straight to the ED, which is obviously common sense anyway - as for the severe head pain, she said just continue giving him the Ibuprofen in the meantime. He explains it as all of a sudden, its as though someone grips his brain and squeezes and then everything starts to go black, from the outside in, so he just sits down wherever he is at the time to stop from blacking out!!! This MRI next week cannot come quickly enough! I thank you ALL so much for your amazing support to our little family throughout all of this, it definitely helps us get through our days knowing we are not alone, there are other people with advice, answers and experience to help us along our way

We are back from the GP and have some results... as well as more new tests sent off to the Lab. DS has tested positive to Mycoplasma titres in his blood from last month! Therefore, the diagnosis at this stage is Mycoplasma Encephalitis. I requested the throat swab, which was easy as she commented that he seems to have had a persistent mildly red throat throughout this whole process. I am concerned this was not an adequate swab however, being that DS did not protest, gag or feel any discomfort which Dr. K told me was imperative in ensuring you've done it correctly! I am not the doctor though, so I just need to wait and see what comes of that - I did ask for the 72 hour culture. She also did a nasal swab. She would like his bloods done again early next week, given that DS still has the Petechial rash. As far as that goes, she wonders if that and the low white cell count are due to a current viral infection. I enquired as to whether abx woiuld be worthwhile with the Mycoplasma, she said no, given the infection was obviously some time ago - I asked then, how could it currently be causing symptoms - she explained the affects can stay in the body, but still said antibiotics wouldn't help! Again, I don't know enough about this, so will do some reading now and see what I can find. I thank you all so much for your advice and support thus far, I truly, truly appreciate it and will keep you updated If anyone else has any personal experience with Mycoplasma, I would love to hear about it - I am assuming then, if the throat culture comes back negative for Strep, we are ONLY dealing with Mycoplasma and then it would not be any form of PANS?

Thank you - I will request the 72 hour culture today. This is what is so frustrating - SO many doctors have agreed that ALL of this is indicative of Strep or perhaps EBV, yet the doctors who can actually help us, are not willing to. I wish I were able to see the hospital doctors privately as they have been so incredibly supportive! I will also request the test for EBV while we are there. Dr K is willing to work with us via phone or Skype if I am able to organise certain tests he would need for diagnosis, I will push for these from the GP too, and try to get that appointment ASAP. I am NOT leaving that office without SOMETHING! My Mum even said this morning, "If you have to come out of these without an answer, an antibiotic or a referral, I do NOT want to be here when you get home!" lol, I guess I am looking very desperate and determined at this stage!

His rash came up as tiny little purple dots under the skin - about 1-2mm each. Some of them make lines around any body creases (near armpits etc) and some are just spread all over his torso, there are thousands of tiny dots, some spread apart, some more clustered, they are very severe inside his elbows. The doctor described this as Petechia. It did not change colour when pressed and is not raised. He has never ever had a throat culture, I even asked for one, but was told there was no need (by the doctors who feel low ASO titer means NO to previous strep!) I am going to request one today at the GP. I just want this sorted out. We know SOMETHING is wrong, I just want to know what that something is!

Thank you all so very much, I appreciate that you have taken the time to reply and offer me your advice. At this appointment this morning I will bring along my list of questions (that you have helped me with) and I will request that we receive a referral to an Immunologist ASAP. I am quite sure there are some only a matter of 4-5 hours drive from where we live. I will ask for the rest of the tests that you have recommended (My poor DS will be upset, he is getting very tired of the blood tests!) I will not be leaving that office today without antibiotics or some sense of direction! And I will update when I know more! Thank you again

Sorry for my multiple posts, I am trying to work out how to delete my topics and just put everything together in one? I really need some help from other parents on this one prior to an appointment tomorrow please! Brief history: DS is 10 years old, was diagnosed with Scarlet Fever by clinical presentation mid-August. Weeks after, he was experiencing a severe, sudden onset of OCD and minor tics - we got a referral from the GP to Mental Health, he underwent assessments. Over the coming weeks, symptoms ranged from OCD, tics to personality changes and "immaturity" for lack of a better term. Speech became affected, walking became odd, stiff, robotic movements. I was reading a book about OCD, came across a paragraph about PANDAS and made the POSSIBLE connection - phoned Mental Health, they had a quick meeting, all agreed PANDAS was the most likely cause of the symptoms. We were referred to a doctor. Doctors ran bloods, we were told they were negative for Strep, so Scarlet Fever could never have been an accurate diagnosis. My son began to develop severe head pain, I took him to the after hours clinic and was advised "It is all linked, you need to just follow up with a regular doctor" even though we wouldn't be able to see our GP for a week! After many weeks, we finally were able to secure an appointment with a Pediatrician in a nearby city - His opinion is that DS has Post Infection Neuro symptoms, as well as Tourettes, and is still toying with the idea of other possibilities also. He again stated that the ASO titer was too low, and DS could not have had Scarlet Fever. So, we left without any form of treatment. He did however order for extensions to be done on the existing blood sample from last month (the 2nd ASO titers) and also for an MRI to be done at the end of next week. Yesterday my son developed a Petechial rash on his torso, around his armpits and inside his elbows. I took him to Outpatients again as it was after hours. The doctor was very concerned this was indicative of low platelets and ordered for bloods to be done this morning. Upon receiving the results of these - the platelets are apparently OK, however his white cell count is very low. We have an appointment to discuss this and the results of the extensions arrange by the Pediatrician tomorrow morning. My question to you all is: Now that I am at this point, going around in circles and not getting anywhere, what questions do I need to ask the GP? What tests should I request? I want my son well and if there is something bacterial, he needs antibiotics! It has been suggested that my son might have a weak immune system and that perhaps his ASO titer WERE in fact elevated for him during the scarlet fever, given that since that time, they have descended. Should I request any specific tests to check his immune system? I will be arranging for another ASO/Atni DNase also to see if the level is still descending - perhaps this will indicate a low baseline. The doctor we spoke with last night said this is highly possible. Surely this current Petechial rash and low white cell count means SOMETHING? I would truly, truly appreciate any advice you are able to pass along to me Thank you in advance! Blood results thus far - I will get a copy of recent tests tomorrow while with the GP hopefully 2nd day of "possible" Scarlet Fever rash) - Antistreptolysin-O: <80 IU/mL - Anti-Streptoccal DNase: <100 IUmL 6 weeks after diagnosis of Scarlet Fever - Antistreptolysin-O: <59 IU/mL - Anti-Streptoccal DNase: <80 IUmL

We actually just received results over the phone - Platelets seem to be fine, however DS has a low white cell count. This teamed with the petechial rash is confusing - we were told just to follow up with our GP, who as always is IMPOSSIBLE to get in to see. I do have the opportunity to call the minute they open the clinic in the morning to see if I am able to get him a last minute urgent appointment. I just don't know what any of this means or if its all related, I feel like we are going around in circles!

Thank you for this advice, but no I am not using Melatonin, or anything else to aid in sleep. Thankfully my son manages to sleep well

Thank You very much. We had a good day yesterday, no pain and it was a good day in regards to the compulsions and behaviours also. This morning however he has woken with head pain, so I will begin the Ibuprofen immediately and keep a good detailed journal of any changes. Thank You Thank you for your response. My son actually had to go and have some tests done this morning as he has developed a Petechea rash - the doctor feels this is due to a low platelet count which could be the cause of everything - she actually mentioned if he was to get a headache in the meantime we are to seek immediate medical advice - I mentioned to her that he had been having headaches, but thankfully not for a few days now. I will update as I know more. Unfortunately though, if platelets are not the cause, we are STILL having much difficulty getting anyone to prescribe abx for him, its incredibly frustrating!! I hope things are better! I just wanted to say the stabbing head pain has alwayss been my son's first symptom before our pandas flare. Dr. Latimer explained that his immune system is trying to kill off brain proteins that mimick strep. Antibiotics to kill the true strep are needed. We also do ibprofin, but until strep is gone the pain continues.

You said the doctor thinks this is POST infection related. So does that mean he is unwilling to treat the symptoms because the infection is gone? What has he given you in regards to any medications. Is your son on any type of prophylactic abx. to prevent future infections? It just does not sound like he is willing to do much in the way of treatments so he is trying to fall back on the Tourette's dx. I hope you can piece together some more of the puzzle but without a willing doctor on board to treat this it is going to be a real battle. Sorry you are having to go through this. Yes, unfortunately at this point, the Ped is unwilling to treat anything at all! We walked out of that office with SO many possibilities in our hands, and still no form of treatment. I am hoping the extension on the blood work or the MRI will show SOMETHING that will help us get a step closer to actual treatment! I am so sorry you are not getting any treatment for any of this. For us, augmentin has been the thing that we have found to help the most. Still not at 100% yet but it seems right now that my son will be taking this for the long haul. We just had our follow up apt. Yesterday and I was surprised that our doctor was not even interested in doing any bloodwork at all. She basically wants to just treat the symptoms. I am not sure that my sons bloodwork would have shown anything out of the ordinary anyway. We are just glad to have a treatment plan and are hopeful that these next few months will bring him back to baseline. For you, I hope that you get some answers. Would they not even be willing to try a month of abx. to see how he responds? Especially given the scarlet fever connection. Thank you for your reply - My son has actually since developed a Patechea rash, and was sent for full blood count this morning, we should have results this afternoon. I am under the impression they are suspecting ITP, I don't know much about this however the doctor is feeling it is all definitely connected. Fingers crossed we will soon have some answers

Well, I am glad that you shared - our journey has only just begun and we are still not yet certain exactly what we are dealing with, but I find hope in your story for all of us

Oh wow, what a wonderful milestone for you all!! It's so lovely to read stories of remission and good outcomes

For anyone who has not been following our story so far and would like to know in case it makes more sense of what I am writing now... here is my last post - http://www.latitudes.org/forums/index.php?showtopic=18712 This afternoon, my son came home from school with a rash, inside his skin folds is raised and bumpy and itchy, much like the Scarlet Fever, and on his torso, around the front and back of his armpits there are masses of tiny pin pricks like little blood clots, some of these are in lines, some are spread all over the place - this rash did appear throughout the Scarlet Fever diagnosis also and the GP said it was likely just that his skin was sensitive so any rubbing would cause this reaction. However, the doctor we saw this afternoon, is extremely confident that this rash is in fact indicative of a low platelet count. She also feels very strongly given the information on file from the last illness that is WAS in fact Scarlet Fever - and she is of the opinion that everyone here shares - the low ASO titer is irrelevant and the fact that it is descending would likely indicate that he has a weak immune system and his baseline is low! She has ordered for bloods to be taken in the morning - she wants full bloodworks to get to the bottom of this immediately - she was incredibly supportive and when I advised her that the Pediatrician mentioned "post infection Neuro symptoms", she actually wrote PANS/PANDAS on the file! Unfortunately however, these doctors ONLY work through our public hospital Outpatients clinic and all results are sent to the GP, so we will not be able to see her again. She actually did mention that Epstein-barr virus can cause this low platelet count, which Dr K did recommend in his email that we test for - I am wondering whether this could be a possibility!

Thank You - I actually did print some of this information and an email I had received from Dr. K both stating that the absence of ASO titer is not a diagnostic criteria - the GP accepted this, however the Pediatrician did not. He outright said, "Well, it sounds as though it did present like Scarlet Fever, however the test says negative, so that is that, it is impossible that is what he had". I am just thinking that perhaps, if we re-test again over the coming weeks, if we find more of a descent, perhaps we should continue testing to see if my son has a very low baseline, and that IN FACT, the first test may have been elevated for him. I am more than willing to accept that perhaps the scarlet fever was an incorrect diagnosis leading us to PANS as opposed to PANDAS - however as you all well know, without some idea of exacly WHICH virus we are dealing with, treatment is impossible!

You said the doctor thinks this is POST infection related. So does that mean he is unwilling to treat the symptoms because the infection is gone? What has he given you in regards to any medications. Is your son on any type of prophylactic abx. to prevent future infections? It just does not sound like he is willing to do much in the way of treatments so he is trying to fall back on the Tourette's dx. I hope you can piece together some more of the puzzle but without a willing doctor on board to treat this it is going to be a real battle. Sorry you are having to go through this. Yes, unfortunately at this point, the Ped is unwilling to treat anything at all! We walked out of that office with SO many possibilities in our hands, and still no form of treatment. I am hoping the extension on the blood work or the MRI will show SOMETHING that will help us get a step closer to actual treatment!

I have successfully managed to request yet another blood sample, and will take my son to do this after school today! Fingers crossed it might help us in putting the pieces of this puzzle together

THANK YOU so very much for your response - I truly appreciate the time you have taken. And yes, You are correct in what you assumed from my post - that IS everything the Pediatrician is thinking!! And yes, I am quite confused now! I completely agree with you on the ASO titers, I have raised the issue of their descent numerous times now with both the GP and the Pediatrician, but noone will elaborate or take it on board, they just dismiss my question. And yet, to me, it's more than obvious, and simple - if they are descending, they MUST have been elevated for HIM! I am going to request that they are done again and see if they are still descending. It just makes no sense to me - I am not a doctor, but to me, it just seems as though SOMETHING must be causing this descent (or have caused the elevation more precisely) You have explained to me exactly what I have wondered myself - if his immune system is weak, it would make sense that his antibodies are low and therefore his titers won't be accurate according to the test criteria - it just makes complete sense that this is the case. I have the results here actually: 2nd day of "possible" Scarlet Fever rash) - Antistreptolysin-O: <80 IU/mL - Anti-Streptoccal DNase: <100 IUmL 6 weeks after diagnosis of Scarlet Fever - Antistreptolysin-O: <59 IU/mL - Anti-Streptoccal DNase: <80 IUmL I don't know if this helps at all? I am just worried - I want to ensure that we know exactly what is going on with my son in order to get him well as soon as possible. Some days are much worse than others, and those days are so heartbreaking. But I will call the GP now and ask for another set of tests to be done to see if it is still descending. Thank you again for your help.

I have been keeping in close contact with one particular member of the forum, however I wanted to add my update here also, for those of you who have kindly taken the time to offer us resources and advice so far. Master 10 had a visit with a Pediatrician this past week - he was able to fit us in at short notice given the GPs request for him to be seen urgently for possible PANDAS. The Ped was good, and was able to pick up on some movement issues and inability to follow simple instructions and complete simple tasks etc without my having to mention it. He disagrees that this is PANDAS, given that he disagrees that we could have had a negative (and descending) ASO titer, he feels Master 10 never had Scarlet Fever, despite the obvious clinical presentation - but rather, he had some other kind of infection/virus. He DOES however feel that SOME of the symptoms are post infection Neuro symptoms. But he also feels he has Tourettes. Given that my son only has very rare episodes of tics, I was surprised by this - to me, the more we look at this, the more it seems like it is definitely the autoimmune assault on the brain but that perhaps this is not the first time, this might in fact be the third time, it was just more obvious, severe and I was able to make the connection given the recent infection. I am assuming the doctor is thinking a PANS type diagnosis? If he is however, would he not be familiar with the relevant tics? Master 10 will be having an MRI in 2 weeks, and the Ped also ordered an extension of tests to be done on the existing blood samples. For now, the Ped will have all of the results sent back to the Psychiatrist who we will be seeing in a few weeks, and he will work with her on diagnosis of anything else involved. In some small way, I feel relief to know that I do have the doctors support in my suspicion that this is post infection related - I expected to hit a brick wall there. But, the wheels are in motion

Thank You very much. We had a good day yesterday, no pain and it was a good day in regards to the compulsions and behaviours also. This morning however he has woken with head pain, so I will begin the Ibuprofen immediately and keep a good detailed journal of any changes. Thank You

My son is 10, and although we are still awaiting an official diagnosis, he was asking all about PANDAS a few days ago after hearing me making calls etc. I began to explain it to him in my own terms, when suddenly he changed the game a little and said "So it's like a war - Alexander is the territory, Germany (Strep) comes in to attack, and Australia (Antibodies) begin to fight back, but somewhere along the lines, some of the Aussies get a little mixed up and start attacking some of the home territory?" And it all came together from there! I think it really depends on the child, but being able to related it to something they understand, most definitely helps! We continued on our Military version of PANDAS until such time as he was confident he understood everything he needed to about PANDAS! Good luck with it!