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  1. That's awesome! Thanks for getting the word out. Can't wait to see it
  2. My son who is 7 freaked out the first time he had blood drawn. Turned out to be a great strategy for him, he said afterward since he was so busy freaking out, he didn't even feel the pinch...LOL. I was also soooooo worried since it was his first time, he could probably smell my fear. But....the next time we went we talked about being calm, that he would feel a pinch, and brought our IPOD. He sat on my lap, put his head (forehead) on my right arm to watch the video (had earplugs in), and they were able to take blood from his left arm. I think bringing something else for them to focus on really helps. So far we've done it the same way every time (about 8 times since march) and he's done great. We use the same strategy for my daughter who's 6. But she also found it really interesting to talk about and check out all the tubes. It took a while longer her first time, but we just made it all about the facts...blood cells, tubes, bacteria, lab etc. It kind of took the emotion out of it. She likes to know what's going on I should also say that that 1st time with my son he was in a flare, so that just makes everything worse. We ended up going out for a hot wheels car as an incentive each time too. Good luck! I always feel so bad for them. I don't think the pinch is too bad, but just being in a closed in area, near needles is such a stressor. Hollis
  3. Hi Julie~ The book that I seem to use the most is "The Anti-Inflammation Diet and Recipe Book". I like it because it has a chart that's easy for me to flip thru and see what's ok and whats not. It also has some good tidbits here and there that are totally doable. We are pretty strick when the kids are in a flare, but just follow it loosly when they're doing ok. Hollis
  4. Hi Cynthia~ When our kids were first diagnosed with PANDAS, our ped. recommended the anti-inflammatory diet. I do think it helped. We still follow the diet, loosly at the moment, but we get strict with it when the kids are sick, or having a flare in symptoms. Dr. T recommended the ibuprofen for us too, and they seemed to do well on that also. Hollis
  5. I am so sorry that you have to go through this! Your post actually brought tears to my eyes. My son started with PANDAS in Feb. of this year. He is also 7. I am assuming the last med. was Clindamycin. It's super gross tasting. I would definatly start keeping good track of all of the behaviors/tics etc. In the beginning I bought a big daily planner and would write what was going on each day with each child (I have 2 w/PANDAS). But that helps because you can have it in hand and show the Dr. I would also chart the behaviors w/numbers. So if my daughter had an ouburst/rage, I could write that down, describe it, and then give it a 1-10 scale rating. That seemed to help a ton. Also, put the meds. in there. That helped especially for us when trying to explain the rages to the Dr. I could specifically pinpoint when they would get better after abx. So when they tried to tell me I was overreacting, or it was just a "fit", I could show them how the behavior improvment correlated with the timing of abx. I have actually had a doctor tell me that my kids needed psychiatric help, and there was nothing else wrong....grrrrr. We know our kids better that anyone, and also have the "mama gut instinct", so I would say trust your gut....especially on the behaviors. Regarding your ped. that's tricky. Our ped. is actually the one that told me about the PANDAS, but said she will have to learn along the way with me because she's not familiar with it. She also has said that when she has called other specialists in the area to ask for help/opinions, that nobody really wants to touch it. She did recommend an anti-inflamitory diet in the beginning, and when they are sick to cut down on the inflammation. So far it has seemed to help. So we still see our ped. but have also had to seek out other PANDAS specialists. We consult with Dr. K in Chicago, and Dr. T in NJ (and we live outside of Chicago). They have been great especially with longer doses of abx to help clear infections. We weren't sure if strep was hiding somewhere, or just not being cleared and having it over and over. I would also definatly try to get in with a PANDAS specialist asap. That way you can figure out if you are dealing with PANDAS or not, and then have a plan of action. I am not familiar with the dr's in your area, but I'm sure someone will chime in with some recommendations. Otherwise, some of the PANDAS dr's do phone consults. I am hoping that my ped will consult with them through out the year if needed, so maybe that can be an option for your ped? This board is wonderful and you will find alot of information and support. Hang in there, you are a great Mom! Hollis
  6. I can totally relate to you and your feelings. It is just the realilty of how our lives are My kids recently spent the weekend at Grandmas. Before they left I went over all of the specific instructions. I have also been very verbal in the past about germs etc. My daughter called me the second day there and said she was sleeping in Grandma's bed with her. Grandma has not been tested to see if she is a strep/staph carrier. Of course I had a flush of panic, and my husband thinks I am worrying about nothing. He says you can't be worried over every person they come in contact with, but that's the thing....I can and I will. I did not say anything to her because I was kind-of in shock, and didn't know what/and how to say anything to her in that moment without hurting her feelings. She was trying so hard on all of the other issues...germs, diet, etc. But I will definatly bring it up in the future. I also feel so alone in the fact that no matter how much I tell them what we need to do, they don't understand the seriousness of it. But, I think unless they are really in the trenches with our kids while they are going through this, they don't really "get it" as much as they try. My one good friend finally got it when I told her when your kid gets sick they can get over it, when my kids get sick it starts an assault on thier body and brain. I have learned that I definatly need to speak up in the moment and not worry about hurting feelings, but that is sooo hard for me to do. I think that your aunt will just have to deal with it. It's a big fat bummer, but that's just the way it is. That is so great though that your son was on top of it! Hang in there
  7. What a great website! I will definatly check it out, and thanks for asking about adding PANDAS/PITAND!
  8. I had never really thought too much about it, but for a year or so before our 1st PANDAS episode for my DD6 she complained of "things in her eyes" that made it harder for her to see. They seemed to bother her, but never got too bad. She now is PANDAS and Lyme. They are not consistent, but seem to come and go for a few days at at time. The eye doctor was not able to see anything.
  9. This happened to my son too! I think it was also on day 7. I remember reading at the time about kids having a reaction the 2nd time around with it, and also on the 7th day. Not sure why though. My sons hives were rediculous. So, no more ammox. for us either.
  10. Hi Christianmom~ I don't have teenagers that we are dealing with, my kids are only 6 and 7. But I wanted to let you know I also read "Out of the Fog" and actually contacted Beth with questions. When I did, I left my number and she actually called me within 24hours. We spoke for almost an hour, and she was so helpful and informative. So I would recommend contacting her by email or phone, she is wonderful.
  11. Hi Stephanie, That is sooooooo great to hear! Thanks for posting and letting us know. We are also seeing Angelica and are having some amazing results. I will have to post an update too....my kids are PANDAS/Lyme. I am especially nervous though about the start of the school year. It makes me feel so much better knowing someone else using homeopathy is able to deal with strep/illness. Even the thought of it makes me freak out a bit. It's so hard for me to imagine them getting strep and being able to hold tight and trust in the process of homeopathy. But I'm working on it
  12. Hi Christina, We have not had good luck with an ID doctor. I'm not sure where you're located, so maybe you'll have better luck than we have. We saw someone at Childrens Memorial in Chicago. To make a really long story short...the Dr. actually said to me that my kids need psychiatric help.....and this is all in thier head. I of course had a hard time with that. I decided to set a good example for my kids that day and told him that we would have to agree to disagree. I would get the name of the ID dr. recommended and give them a call first. I also have to agree with WorriedDad about thier "expert opinion" making it harder to get help for my two PANDAS kids.
  13. My DS7 has had a very up and down summer in regards to PANDAS symptoms. I haven't been able to put my finger on it until just the other day. It's his teeth. He has lost 3 of them over the last 2 months. He just lost one a few days ago and already seems better. It's driving me crazy because I feel like we're just getting our heads into this PANDAS/Lyme mess, and then something like a wiggly tooth can cause a flare Most of the time I am just not really sure how to know what is causing what....it's driving me crazy. But....now hopefully we'll have a break from teeth, and let things get back to normal for a bit.
  14. Great news, and sooooo good to hear of kids getting better
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