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  1. Yeah, he's not big on motrin and neither am I so wwe haven't really done much but tomorrow he's going to get it around the clock and if that doesn't help back to the doc we go for urine tests I guess. He does have a spot on his wrist today that looks puss filled so I'm not sure if it's a start of a rash.
  2. I am so sorry. Does he have an all over body rash? The symptoms you mentioned can be from lyme and/or any of the co-infections, but I'm assuming they ran a blood test, or was it a clinical diagnosis? An acute infection of RMSF can be very dangerous so make sure he is being treated properly. What antibiotic was he given and for how long? I think there may be different strains of RMSF depending on where you are located. No rash but he had high fever, not anymore, but his joint and muscles are still hurting.. on a scal of 1-10 he's at a 9 and motrin doesn't help. They did blood work
  3. So my ds, 12, was dx Monday with RMSF from a tick bit that happened on Thursday. He is still in a huge amount of pain (joint, muscle and headaches). Does anyone know how long this pain will last before he is better? Thanks
  4. So when we were at the doctor the other day for joint pain I asked him to run ASO titers on my ds. He had a strep infection about 3 weeks ago, his results were 7. I expected them to be high, am I wrong? Since his titers are low after a confirmed strep infection what else should I be looking into? The doctor said the joint pain is from Osgood Disease, which is when the bones grow faster than is tendons. Should I try to find a doctor to run a full immune panel? Thanks
  5. My ds, 10, is having severe knee pain, to the point of he doesn't even want me to lightly touch him. I can't tell if they are swollen, they have always been big. Not sure if this is a PANDAS issue or if he needs to get to the ER now? I can't get anytime off work right now to get him in to the ortho, hoping next week. Anyone deal with this before? Thanks
  6. We are also on the GFCFSF Egg free diet along with Feingold. You would be surprised at how simple shampoo with a dye in it can affect children. At first it's alot of work but once you get used to it it's so much easier. I have a child that go to his fathers every other weekend and we just pack food for him to take. We keep a loaf of breadin the freezer at his fathers house for use and his father is willing to buy rice milk or almond milk for him to drink. We also avoid preseratives too. I have enjoyed the changed once we started FG in Nov of 2008. A lot of the problems we had took about 6 week
  7. So I finally got the records from our vist with the neuro. As he told me she has a dx of OCD, anxiety and possible ADHD but he also thinks she has Sydenham's Chorea. From what I've read that is just like PANDAS so is there really any difference and if he thinks she has that why wouldn't he dx PANDAS? I guess I just need reassurance that we are dealing with PANDAS no matter what the doc calls it. thanks
  8. I am in the same place as you. My dd is on the PITAND side of things and I'm sick of going to doctors only to hear well she needs this and she needs that but not abx even after I tell them that abx works. PITAND covers not only viruses but other bacteria other than strep (or so I'm gathering and want to believe ) SO instead of going to differnt doctors and getting no answers and wasting money I have started faxing and emailing doctors, giving them the whole story and asking if they think they can help and if they think they can I will call the office an make an appointment. As of right now I'
  9. When I came home tonight my dd had a slight fever of 99, now it's gone. She is having severe burning in her eyes and she is very sensitive to light, even the TV is to bright. She is not on abx right now so it's not a side effect to that but what is it? Has anyone dealt with this? Thanks
  10. I would def by a ribbon to wear and would love to display one on all my cars (magnet)!!! I might even make people here at work put them on their cars too. Everyone here at work knows what I'm going through with my 2 PANDAS kids and would love to help.
  11. QVAR comes in an inhaler and breathed in, not shot up the nose. If that makes any difference. Thanks
  12. I know that oral steriods can help some kids so I'm wondering if inhaled steriods (QVAR) would work also. When my dd's asthma is really bad we do a 5 day course of oral and switch to QVAR after that. Right now I'm having a hard time finding a doc to help me so I'm wondering if I start giving the QVAR if it will have the same effect as an oral steriod on her PANDAS. Anyone have any thought? Thanks
  13. So I finally got my dd's medical records yesterday. Last night I went through all of them and wrote down all illnesses. I found out she never tested positive to strep but looking through she should have been tested a couple of time and wasn't. I compared hers to her borthers records and I found something very interesting. Oh also I have two dx with PANDAS/PITANDS. At 3 months old she was dx with pneumonia along with the oldest ds and middle ds as sick too but dx as URI. Now comparing everything, she would get sick within a few days of both boys getting strep, bronchitis, sinusitis or what ever
  14. We are looking to get together this coming Tuesday for a quick hello. We will be meeting the 4th Tuesday of every month if you would like to join. Please email for more information. Thanks
  15. The doctor that dx my 2 kids is not really in any hurry to treat their PANDAS/PITANDS even though one of them has gamma strep in his stomach, confirmed by a stool sample. He's a 4 out of 4 on the scale. I really need to find someone that will help me. If you know of anyone please let me know. thanks
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