HaylesJohnson

Master 10 has been having worsening headaches lately - Yesterday he had several attacks of severe, knee buckling stabbing or "Stinging in his brain" as he describes it. The pain itself lasts from 30 seconds to 2 minutes, and this can happen up to 3-4 times in half hour. There is no pain or discomfort in between at all, except if he is moving around within the first few minutes after a "Stab" - this will cause some less severe pain. He says the whole interior of his head stings, very sharp and suddenly. He has no warning signs, just the pain. He can be sitting, laying etc. Nothing makes a difference. His other symptoms were exacerbated all day also, he was irrational, opposition, and very "immature" for lack of a better term. He just went on and on and on about everything he spoke about, he was stammering through his speech, and his OCD symptoms were quite bad. Could this be a sign of inflammation? I have read so many times now that Ibuprofen is recommended during times of severe symptoms - considering we still do not have our diagnosis yet and can not be 100% sure PANDAS is what we are dealing with (though I am very certain in myself!), I don't know if these pains and worsening symptoms are linked to one another, or to the possible PANDAS. I obviously took him to the ED last night as he was in excruciating pain, and I wanted to ensure I wasn't just overlooking something else unrelated, he was quickly assessed and it was put down to "His OCD stuff", and we were told to just follow up with the GP and give him Paracetamol. So, I am wondering, with regards to Ibuprofen - IF we are dealing with PANDAS, do I just give him a dose when his symptoms are worse, or do you give your children regular small doses? What is the best way to handle this? Or only when he has these headache episodes? We have a telephone consult with a Neuro-Therapist from Victoria next Wednesday, who says he will be able to diagnose/offer us his opinion over the phone given the history and I am also awaiting a call from Dr Golic (a Biomed)in Brisbane when he manages to find some time. We also have the Psychiatrist appointment next Friday. I know the wheels are in motion, but now that he is suffering physical pain also, I am feeling as though everything is taking far too long. I have also made an appointment with the GP to discuss the headaches in the meantime, but can not get in for 4 days. She is not overly receptive of the possibility of a PANDAS diagnosis anyway, but unfortunately ,I am unable to find another GP as we are in a rural area and after phoning every clinic in town, I have been told repeatedly we need to stay with the GP we have as no one else is accepting new patients! I would appreciate any advice anyone can offer in regards to the headaches/pain. Thank You.

Hi! I am new here and don't know much about PANDAS yet, however I wanted to say that I am happy for you that you have found hope! As for handling blood tests, my son's recent tests caused him a lot of distress, at the mention he would have to come in the following day for them, he began to become extremely anxious and upset, and he is 10 years old! However, the doctor sent us home with a local anesthetic cream and a patch to put on one hour prior to the test, which numbed the area and helped calm his nerves as he knew the pain would not be as severe, perhaps you could inquire about this? Good luck with everything!

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Thank you to everyone for your detailed and resourceful responses, I truly appreciate it. I am now armed with a list of possible contacts for here in Australia thanks to Ozimum, and following another Mental Health appointment, feel I have even more support. The psychologist has not been able to identify any anxiety relating to the OCD, and feels that this is a supporting factor in a diagnosis of PANS/PANDAS also. I will start journalling as of now, and hopefully this will also help provide us with more answers. We have an appointment with a Psychiatrist in two days, who is apparently open to the possibility of PANDAS, which I hope will also help. I love that I have found somewhere to come, to read and learn about others' journeys. I feel for each and every one of you on this journey, and for your children who are at the hands of this condition. Obviously though, there is strength in numbers and this forum has definitely already given me more strength to continue in my fight to advocate for my son, knowing I am not alone in this! Thank you again!

i respectfully disagree with your thought -- if you are dealing with pandas, you very much should use mental health services for working through the OCD and any other mental health symptoms -- anxiety, defiance, etc AND you should use medical treatments to address the medical issues that are driving the symptoms. so, you very much do want and need to discover what, if any, medical situation could be driving the symptoms you are seeing. it sounds to me you have more than enough evidence of medical issues and timing of mental health symptoms for full investigation. Hello, thank you for your reply. I think perhaps I worded this paragraph wrong? I actually meant that I know we will still have to follow the same path we are already on in regards to the Mental Health treatment for OCD, age regression etc. Sorry, I didn't mean to confuse anyone!

Hi everyone! My name is Hayley. I have come here to talk with others about PANDAS, and have detailed our personal experience below. I wold truly appreciate any input/advice, just general parental chat I have a 10 year old son, Alexander. Over the past 4-5 weeks he has developed severe OCD and various personality changes, including "age regression" as described by Mental Health team, in regards to saying inappropriate/immature things that are very out of character, handwriting changes (as noted by his teacher) and so on. His OCD is severe, he has to count EVERYTHING in sets of four, from breaths, to steps, to bites of food etc. It affected him so severaly he lost 2kg in a matter of days, we have since worked hard to get some weight back on him quickly. Obviously, I took him to a GP and requested he be referred to Mental Health for the OCD, given we are in a remote area of Qld and don't have fast access to a specialists in Psych. Mental Health Outreach have been seeing him for a couple of weeks, have assessed him for OCD and were also discussing the possibility of an ASD at one stage, which would have really shocked me, given the sudden, recent onset of the symptoms and the fact that I dont think he really satisfies any other diagnostic criteria. Last week, I was reading a book about OCD, trying to learn more about parenting a child with this condition, and I happened across a small paragraph detailing PANDAS. All of a sudden it hit me - My son was diagnosed just 6 weeks ago with Scarlet Fever!! It sort of all came together very quickly, I was overwhelmed with emotion, certain Mummy instincts telling me THIS is what we are dealing with! The literature described my son to a tee! I spoke with my mother, read her the literature and she agreed, it was UNCANNY! I called Mental Health and spoke with them, our usual psychologist was away, however, she presents his case to the whole team after each consult each week, so everyone is familiar with the situation, so I spoke with another psychologist there, she agreed this made complete sense, more sense than anythign else we had come up with thus far, and spoke with the clinical Nurse and the team leader who all agreed it was a big possibility and I should get him to a GP that day. We were unable to see our GP, and so went to the Outpatients clinic where we saw a student doctor, who also called in the Resident, both whom researched and discussed the possibility with us. They decided it was best to do blood tests, given the rarity of the condition, they felt better trying to find medical "proof" of the existence. We had blood results there from during the Scarlet Fever to use as a baseline for the new testing. The doctors at Outpatients seemed to be on board, however wanted to just clarify as much as possible through official diagnostics. Today I received a call from the regular GP, who told me the Strep tests were negative, the levels were too low to indicate a recent Strep infection - she went back over the baseline tests also - again, too low to indicate Strep. She told me he never had it and that the Scarlet Fever (clinically diagnosed at the Hospital) must have been misdiagnosed - I would be surprised, given it followed the EXACT pattern we were told it would, a rash on the torso, in the elbows, knees, armpits,groin, followed by a very dominant "sunburn" collar around his neck, up his face, leaving a white area around his mouth, strawberry tongue, red throat, the "collar" even peeled by day 5-6 as we were told it would!!! She then told me that his new tests showed lower levels of both group A and group B than the last ones! I don't even know what that means! If he didn't have Strep, how could his levels be dropping? I am somewhat lost now. My son was taken off his antibiotics early due to what the doctor said was a reaction. He developed what looked like a flare up of the torso rash, almost "measle" looking after a couple of days, by then, his collar was peeling etc so the doctor felt confident he was healing and could cease antibiotics. We did as we were told. Follow up urine samples were done 14 days later to ensure no kidney damage was done. That was the extent of the testing. I am more than happy to accept that we may not be dealing with PANDAS, if it's not, it's not, but it all just seems too much to be coincidence to me, my Maternal instincts are telling me that has to be it, and these instincts haven't steered me wrong yet! Until now, I have not found much literature or resources for PANDAS in Australia - I really feel strongly that I need to follow this up more, but I just feel the GP is not on board and isn't understanding what I am trying to achieve, she has not been our GP long, we have recently moved and she doesn't know me well which likely isn't helping the situation. Also, as we had gone to the Outpatients, she has missed some of what is currently happening - but I think at this point, I would feel so much more confident speaking with someone who is familiar with PANDAS, and would then be happy with whatever conclusion they come to regarding a diagnosis (or not). I simply want answers for my son, we already know something is wrong, I just want to know what it is so we can get the appropriate help. I am aware if we are dealing with PANDAS it will not change the direction of treatments for the symptoms (Mental Health for the OCD etc), but I would like to be more vigilant with colds/flus etc. if I know that is what we are dealing with, or be able to move forward from here if not Just any advice, support, words of wisdom etc would be so greatly appreciated. This passed 5-6 weeks has been so worrying and exhausting, the OCD has consumed my poor boy, our household, the worry is obviously the WORST of all. I just want him well, that's all. Thank you in advance!