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tiffany_v

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  1. Thank you all for the answers. My youngest DD has been sick with a nasty cold, so maybe that could be contributing? Also, he does have a loose tooth right now, I did not realize that that could cause a flare up. I have Saving Sammy, but have not read it all the way through yet. One of my obstacles is, although we have a ped that is working with us, he does not know much about PANDAS, I have sent most of the information to him through email. We have done Augmentin before with not much improvement. Cephalaxin has worked well for him, but the dr did not want to do that for prophylaxis. Isaiah had
  2. I'd love some of your insight!! My 6 yo PANDAS son is on 100mg of Azithromycin daily for prophylaxis. He is about 6 weeks in. He has been doing very well up until about a week ago. A lot of his symptoms have returned. I'm not sure if it is normal for them to have ups and downs while on antibiotics or if I need to push getting his dosage upped? He's also been complaining of his legs being tired a lot, and last night I noticed quite a few bruises on his legs. I just spoke to his dr and he is ordering another ASO, cbc, sed rate and possibly some other tests. The dr is not wanting to up his dose a
  3. I'd love some of your insight!! My 6 yo PANDAS son is on 100mg of Azithromycin daily for prophylaxis. He is about 6 weeks in. He has been doing very well up until about a week ago. A lot of his symptoms have returned. I'm not sure if it is normal for them to have ups and downs while on antibiotics or if I need to push getting his dosage upped? He's also been complaining of his legs being tired a lot, and last night I noticed quite a few bruises on his legs. I just spoke to his dr and he is ordering another ASO, cbc, sed rate and possibly some other tests. The dr is not wanting to up his dose a
  4. Thank you all so much for your replies. After reading your posts on this thread I went into Infectious Disease in Seattle with the mind set of: "They aren't going to "believe" me, their going to blow me off and tell me PANDAS doesn't exist." I was ready! Imagine my surprise when none of that happened!!! They LISTENED to me, they asked me questions....the said "Isaiah's symptoms fit the diagnoses of PANDAS!!" This was a huge step in the right direction for me!! We now have a pediatrician, neurologist AND ID on board with us, and working to find the best treatment for Isaiah! I feel so blessed!!
  5. I agree!! And he was a jerk at first, but then was better toward the end of the appt. But after seeing this email I won't be returning to him!!
  6. Wow, I am shocked! We saw Dr. Ferri in November and he is the one that referred us to Infectious Disease and agreed that IVIG would be a good option, it will be done by our neurologist here in Spokane that does support PANDAS. Dr. Ferri wasn't 100% convinced I don't feel like, but he wasn't dismissive either. Your email from Dr. Ferri honestly made my jaw drop. Thank you for sharing that. I am hopeful that our appt. with infectious disease will provide some positive results, however if not...I won't give up! I'll keep you guys posted on how our experience is.
  7. Thank you both! We saw neurology in November, at that time the dr. called the infectious disease dr. that was on call and explained our "case." I don't believe they were 100% convinced of PANDAS, however they were concerned with his strep levels and said it would be a good idea for him to be seen. We saw inf. disease here in Spokane, and although he "believed" in PANDAS he said he did not know enough to feel comfortable treating my son. I appreciate you being upfront with me about your experience at Seattle Childrens. I feel like I can go in with open eyes and be better prepared if they t
  8. Hi all!! I haven't been very active lately, the holidays were so busy at my house!! Isaiah is doing well at the moment, we just finished a 2 week course of Cephalaxin and that has DEFINITELY helped SO much!! I have my little boy back during parts of the day! He was able to enjoy Christmas and his birthday ( <-- which is on Christmas day), which was awesome! We are traveling across the state to Seattle on Thursday to see Infectious Disease at Seattle Childrens Hospital, wondering if anyone can let me know what to expect, or questions to ask?? Isaiahs ASO titers aren't coming down, in fact a
  9. Thank you all so much for you thoughts and opinions. I truely appreciate it! I decided to go with my gut on this one and try antibiotics first. He's only ever been on Cephalaxin for 2 weeks since being diagnosed. So I asked for Augmentin and he is doing a month long course, THEN we will check his titers again and see if it helped the strep infection. If need be we will do IVIG at that time. He's never had any other testing besides ASO titer, CBC and CMP. I keep asking if they need to check anything else, but they say no, if anyone can tell me if there is anything that I should really push for
  10. I should add, that they've not done any other "testing." Just ASO titers, CBC and kidney function.
  11. My son Isaiah just got diagnosed with PANDAS in May. His pedi does not know much about it, but is willing to learn from the information I send to him and such. Isaiah had his first strep infection in Sept. 2009, he then had strep 6 or 7 times in a 7 month period and scarlet fever once. His tonsils were removed in June of 2010 and symptoms worsened, however, we didn't know that it was PANDAS at the time. He has anxiety, OCD, he is very emotional, has started developing a dry cough/clearing of the throat (vocal tic?!) and some aggression. Since May he has had 2 rounds of Cephalaxin for 2 weeks e
  12. Thank you all for your replies, you all mean so much to me already! I called to cancel the appt that I had with that dr. and the receptionist stated that the dr. would like to speak with me on the phone regarding my son and PANDAS. I spoke on the phone with him today and am considering seeing him, he focuses on detoxifying and natural remedies, which I think would be a good route, just financially it is hard to swallow, since I know we can find dr's that take insurance....but then do I have to get referrals, travel, ect?! I am considering rescheduling the appt. since he did say that he would w
  13. So since I've been looking for "the next step" for Isaiah, my in laws have decided to partake in the search for a doctor. They spoke with some friends in their church and a dr here in town came highly recommended (my in laws are in California, we are in Washington state). So I decided to call this dr. and schedule an appt., during the conversation with the receptionist (whom had never heard of PANDAS) she informs me they don't take insurance (of any kind) and that $300-600 would be required up front for the first visit. We are unable to do that at this time, so I've decided to continue my sear
  14. Thank you for posting this! I needed a laugh today!
  15. Hello!!! Quick update on Isaiah, he is doing very well since his round of ABX, however after the past couple of days I have noticed some of his behaviors returning, they appear to be more mild, but I am seeing them. We saw the pediatrician Tuesday for a follow up since his diagnosis and being on ABX. I was hoping for some more answers at that appt, but did not get any. The dr. told me that we will just wait for symptoms to return, and he would test for strep (he believes it is only strep that causes relapses) then IF he is positive for strep, he can treat with ABX again, if this continues to h
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