momof3inTN

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.

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 and he did have Lyme last year. He's on doxycycline for 14 days. He did get the tick out fairly quickly and as soon as he showed symptoms I took him to the doctor for treatment. He's a PANDAS kid so I don't play around with stuff. He's still real tired and painful and he just wants to get back to normal. Oh yeah, we are in Tennessee.

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

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

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

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 weeks to clear and once I added GFCF it was SOOO much better. Now I know when they get stuff they shouldn't and most of the time my kids are great about not eating food that they know is bad. Feel free to e-mail me if you want more info.

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

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've written to 3 doctors and still looking for more. I will let you know how it goes.

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

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.

QVAR comes in an inhaler and breathed in, not shot up the nose. If that makes any difference. Thanks

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

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 but they alwasy said it was URI or sinisitis. In June of 04 which would make her almost 3, when I world came crashing down, she got sick with "something". High fever, red throat, congestion, you know the works. Started her on Amox with negative rapid strep but they cultured it and it was negative. the next day she was back to the dr with fever of 104.6, they gave her a shot of abx and did another rapid and it was negative and the culture was negative. I have in MY noted that a few days later the fever was down but she was still real sick, red swollen tonsils and white patches. (I don't know why I didn't take her back) Looking through all of this she has bouts of frequent urination, bet wetting when she was 5 yrs old and behavior problems all right after one of the boys got sick. In Nov of 08, she was 7, we started the Feingold Diet and our world was better. In Aug of this year she got sick again with what we thought was EBV but we still are positive about that cause blood work didn't show an immediate exposure but had elevated numbers for past exposure. All lymph nodes in her body were swollen and about 3-4 days after getting off Omnicef for whatever infection she had she became the Crazy Kylie that we all know now. Body twitching, rage, eyes dialating, overly emotional, throws things the works and then my son also started in with being overly emotional, OCD flaring, ADHD flaring. So with all that said, I do understand that strep can live other places in the body besides the throat so I guess she could have had strep somewhere else. I'm wondering if a doctor is going to listen to me when I tell them that I don't have a confirmed case of strep in her but I do have confirmed strep in her brothers (one of which is PANDAS). When she was dx it was with PITANDS since we couldn't confirm that her problem in August was strep. Would all you still consider this PANDAS/PITANDS? Thanks

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

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

I wanted to try Acycovir but it doesn't cross the blood-brain barrier. The Valtrex that I cant' afford is the generic.... we have REALLY bad insurance whenit comes to scripts. They have been on OLE but it's not helping at all. Thanks

The doctor wanted to start my dd on Valtrex for her PITANDS but I soooo can not afford that medication. Does anyone else know of a good antiviral what has or will work? Thanks

Yes we were going to test for Lyme since she's 9 yo and has been bitten by probably 50 ticks. I will rethink this now. Thanks

We are just starting this journey, well sorta. My question is, when this last episode with my dd flared she had contracted EBV and her Strep titers are low so I'm wondering if the EBV can make PANDAS flare? Thanks

go to www.feingold.org this site can explain everything for you. I have 2 children tat can not have any dyes at all.

I have two wonderful kiddos with PANDAS, maybe. My son, 10 yo, has OCD and his stool sample has Gamma Strep, 4 out of 4 on their scale. My daughter, 9 yo, started throwing major temper tantrums in August after being sick. She has been dx with Tourette's and her dr thinks she has PANDAS also. We did the blood work and it came back negative but as I understand that can happen and she could still have it. She has several major meltdowns (Very angry) a day and I'm afraid she is going to hurt herself or others. We started them on OLE a week ago, 500mg 3x day. Now she is having daily headaches and he is very tired. Not sure if they are reacting to the OLE. My daughter is and has been on GSE to control her yeast, which is getting better. I would love to know if there is something else that we can give her. We go back to the dr on the 9th to talk about the results and possible antibiotics but I would love to start getting this under control with natural cures. She is very out of control and his OCD is taking over his day. Thanks for your help.