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About HaylesJohnson

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  1. 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!
  2. 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?
  3. 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.
  4. 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?
  5. 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
  6. 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 hi
  7. 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 docto
  8. 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 NO
  9. 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 tod
  10. 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!
  11. 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 t
  12. 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!
  13. 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
  14. 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
  15. 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
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