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Everything posted by ziva

  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
  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 wri
  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 t
  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 abo
  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 bac
  14. Great news, and sooooo good to hear of kids getting better
  15. I remember reading your original post and feeling so happy for you . Such a great feeling to see our little ones happy and enjoying life like they should! I agree with Lynn....NONE of our kids should have to go through this Sending you lots of happy thoughs and prayers for a better day tomorrow. Hugs~
  16. Hi Karen, I'm sorry that don't have any advice to offer I have two PANDAS kids (possibly three..my youngest is looking PANDAS like), and we are just starting down the Lyme road with my oldest. I was actually just going to post something similar, so I look forward to what everyone has to say. I just wanted to say how awesome and pro-active your doctor (and you as a mom) were to even check for Lyme. My ped is great with PANDAS, but not really wanting to even check for Lyme involvment. I know it will be a long/rough road for all of us, but at least you now know what your are
  17. I just called and made an apt. for bloodwork. I made it for all three just to check and see how everything is going since my DS7 seems to be in a slight flare. I just HATE having to take them in for bloodwork. Makes us all so sad. I wish they could have the laughing gas like they used to do at the dentist to take the edge off Thanks again for the help and info!
  18. Ok, I have two PANDAS kids...DS7, and DD6. They were both pretty easy to diagnose, as they both got strep and within 24 hours and then had HUGE behavior/pshyc changes. My pediatrician knew right away. My DS4 also had strep (back in march/april), but seemed to get it under control with 2 rounds of abx. We did two rounds just to be sure, since we didn't want to re-infect my other two. Since discovering PANDAS in my other two, he has been clingy, and more aggressive...but not too bad. He has always been a pretty mild mannered boy. Never really threw fits etc. But now when he gets
  19. Hi Tiffany, I definatly wouldn't wait to be referred to infectious disease. We just saw the head of infectious disease at Childrens Mem. in Chicago, and he told me my kids need psychiatric help. Even after I told him three other peds. diagnosed PANDAS, and showed him all the bloodwork. I might push for the specialists in Seattle (if he knows they understand PANDAS), or look for another PANDAS doc that you would be able to go to for abx./further testing. It will prob. take a while to get in anyway, so at least if you make the apt. you could try to get some other tests run in the mean ti
  20. Hi Kaviar~ We love our ped. and have a good relationship with her, but we still have not been able to get her on board with any type of prophalactic abx. Actually not just proph. abx., but we just even to try a longer dose (20-30days) when the symptoms ramped up to see if that would help. She suggested IVIG, but was not sure how to help us with that at this time. I have been printing out some suggested info. from this board. There have been some really great links to articles that seem like they would help sway in favor of the abx. I'm sure someone will chime in with those links.
  21. Hi Kari~ My two PANDAS kids don't seem to get strep often, but we are still having issues with behavioral symptoms/rages/defiance too. When I spoke to our PANDAS doc about considering IVIG he actually recommended getting the tonsils/adenoids out first. He thinks it would really help. I have heard that they can hide strep. We are in the process now of trying to figure out our next step. I have heard some stories of it really helping, but I have also heard some stories that it made things worse. I am glad you posted this. I look forward to what everyone has to say
  22. Hi Massmom~ I am so glad you have found this forum. They have really helped me sooooo much. Just reading Nancy's response was great...I had no idea about the valerian root.......we will have to try that. We are still new to this. I have two kids w/ PANDAS, diagnosed Feb/Mar when strep was going around like crazy here (Chicago area). My kids do not have strep at the moment, but still have lingering symptoms. The strep was definatly our trigger, but now I think any infection/virus/allergies can cause more symptoms. I know my DS7's symptoms ramp up even when he is losing a tooth. F
  23. I am scheduled to see Dr. P/LLMD in Elgin the beginning of July. I am wondering if anyone knows if he does ART, or can recommend someone out here that does. We are in the western suburbs of Chicago. I've contacted the Klinghardt offices and they are not offering any referrals at the moment. We recieved a recommenation for a Dr. in Denver, but.....we are getting so drained financially that I am trying to find someone closer. If we can't find any near us, I think we will be headed to Denver. Thanks!
  24. That's so great that your Dr. even ordered the tests! I've heard of so many Dr's that wont even do that. Hopefully your Dr's views will change once he sees the correlation between the behaviors and strep/abx. I'm so glad you found this forum. I have learned so much from everyone here Good luck, and keep us posted.
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