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trubiano

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Everything posted by trubiano

  1. I have gotten copies of my son's labs, MRI, and cardiology notes. Anything else you think would be helpful for the visit?
  2. My son has been on penicillin 250 mg twice a day for 4 years and has done well up until recently. When he had a flare up(ocd/tics/hallucinations) they gave us a 10 day dose of Augmentin 875 mg and everything went away.
  3. I would do the sleep study because of the bed wetting and hard to wake up issues. I am a sleep technician and there could be other issues going on other than pandas. Also, while the study is being performed we are doing a full night(6-8 hr) of EEG, so they might pick up something not seen in a regular EEG study.
  4. Ok.. I begged the ped last week to let us stop his PCN VK and give us Augmentin. She gave us 875 mg for 10 days and on day 7 his tic was basically gone!!!! Hallucinations.. gone! OCD.. slight! Emotional.. can't win them all! We have an appointment with Dr. Latimer in Oct and our ped said he needed to go back on his PCN until then. I'm scared to death! Is it just me or shouldn't we continue on Augmentin for a little while longer? He is down to a facial/neck tic maybe twice an hour. I still think he needs more time, but they won't budge! I'm afraid he will have to relapse into not bei
  5. Wow! My son has been getting nose bleeds too. We haven't done IVIG. Wonder if this is another pandas issue because of inflammation? They only thing that has worked for us is saline nasal spray. He uses it daily, but also when it starts to pour we flush it with the spray a few times and the salt makes it stop quickly.
  6. Thanks! I was doing a search for 504, should have thought about searching "schools"!!!
  7. Our meeting is next week and I just wanted to know what info you brought for everyone to read about PANDAS? I don't know if they will take the time to read it, but I'm bringing a copy of Saving Sammy in the hopes they will understand. They asked for me to put together some things for them to read before our meeting and I'm clueless on what will actually get their attention! What worked for you?
  8. Were they going to give him prozac for tics? What are his other symptoms? Ped said prozac for his OCD/emotional behaviors and I can't remember the name for the anti-tic meds, and then I think the other med was called clonadine. She acted like she was dying to say "told you so." She has never agreeded with our option to use more natural things. This is the 1st big flare up in 4 years, so I think the suppliments worked! We have all had negative throat cultures, but had a foster child staying with us back in April who had strep. I told the ped this, but she said it wasn't the cause.
  9. Lynn, I had to post! My son is having a huge relapse with PANDAS, so I have been back lurking trying to find out how to help him this time around and I noticed something you said. "eliminate a plague of warts that DS had" About a month ago we noticed my son has little warts growing. In is arm pits, shoulders,tops of feet, elbows, and knees. Is there a cause for these that you are aware of?
  10. He was given Augmentin for 10 days and then told to start back on his PCN. Should he continue on Augmentin daily? As long as the tics and hallucinations do not get worse he should be able to function some-what normal. Yesterday was the first day of school and although kid's told him to stop moving a few times he seemed to be ok. I need to look back at his medical records. I wonder if they give him the same antibiotic they did last time if his tic will go away as fast. It was a shot in the leg, but I can't remember the name!
  11. No sorry!! My son told his classmates this!
  12. Thank you! As a parent you just want to fix things. 4 years ago his tics stopped after just a few days on antibiotic and I was just hoping it would happen again. We did the T&A, but what is pex? He started school today and his teacher said when the kid's asked why his moving so much he told them he got an infection from the pandas! Did you see a specialist that was helpful?
  13. Ped agreed to give us Augmentin 875 mg and I was praying the tics would get better and I could take him back in and say "see he doesn't need prozac!" , but no such luck. Tics are getting worse. I'm waiting for a call from Dr. Murphy's office to see if she will see us, have an appointment with Dr. Latimer is October, and emailed Dr. K to see if I can pay for a phone consult with him and my ped. You get so happy thinking your child is "healed" because the the PANDAS symptoms come and go, but this time I am reminded my baby is not healed and it makes me sad. I feel like I should have seeked o
  14. It's not helping so far! She gave us 875 mg 2x daily and he weighs 140. I'm calling Dr. Latimer in AM and begging for an appointment and also begging for her to do a phone consult to my ped to tell us what to do until then. Do you think the dose is low for his weight?
  15. Thank you for that info on Dr. T's follow up. My PED basically said he needs more help than she can give and seemed angry I haven't followed her views on putting him on all the drugs the neuro wanted to give. Whatever!! I got Augmentin for 10 days and if the tic starts to go away I'm bringing him back to see her to let her see for herself how the antibiotic helps without other meds. Fingers crossed. She did agree to follow whatever treatment a "PANDAS expert" gave, so I'll cal MOnday and try and get a phone consult with Dr. K. Thank you!!!
  16. Why not call Dr. K or Dr. B and see who can get you in the soonest? (or one of the othe doctors willing to treat PANDAS) Angela Angela, can you tell me exactly who Dr. K and Dr. B are? I'm trying to get their contact info off the docotor list. Thank you!!
  17. Thank you guys! Got the augmentin script finally and waiting to get appt with dr. murphy in florida! I love all of you. 4 years and I still feel like this is the only place I can go where people understand. One day I hope every doctor will want to help us and not act as if we are crazy!
  18. Have you already gone through the patient intake on the phone with Muphy's office? When I first called in June they told me they weres scheduling out to the end of September, but after they did my phone intake, I got a call a week later getting an a ppt for the following week - it was 3 weeks from initial call to appointment. I have done the patient intake and we are just waiting for a reply. That makes me feel SO much better!
  19. Thank you Vickie! I have been giving him motrin and it does calm the tics so he can at least eat or watch tv. I'm afraid to go to urgent care because I tried it once and they said his case was more complex then what they could handle and I should take him to the children's hospital er, which I just might do! Maybe someone there can help!
  20. My son's tic is worse than ever. He is seeing things that aren't there, emotional, and asked me if he going to die. I took him to the PED today and she refused to change his antibiotic from PCN, which he has been on for 4 years. I told her everything that is happening right now is a repeat from 4 years ago when he first got sick. She said I need to stop using natural products and get him on meds for tics and OCD. According to her I have put it off for too long. I tried to explain to her three days after he got put on antibiotics his tic went away and never returned, so something medical
  21. I'm trying to find the thread that tells us what brand of probiotic is a good strep free one to give our children. Anyone have an idea or know the name? Thanks!
  22. My son was having a very long period where he was emotional, confused, and the OCD had come back. This comes and goes, but seemed to stay longer than normal. Today I noticed his head tic coming back just like it did when we first knew something was going on with him 4 years ago. I asked him why he keeps shaking his head and he says "it feels like somthing is crawling up there". I had to calmly walk away and lock myself in our room, so he wouldn't see me cry. Those were the exact words he said to us when he was five and we found out he had PANDAS. I feel so lost. What do I do?? Anyone e
  23. ] dschneider, what else does dr. murphy suggest? i have my son on probiotics, omega 3, and antibiotics. just wondered if there was something more that might help.
  24. Dedee! You and I found this forum around the same time and I am so happy to read things got better for you. I just read your post from Feb and wanted to ask why your son takes magnesium? Thanks for the update!
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