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jenann

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Everything posted by jenann

  1. A firestorm of comments have gone up on the show's Facebook page. Please join them. https://www.facebook.com/ChicagoMed/ And here is a link to complain directly to NBC. https://www.nbc.com/contact-us
  2. I forgot to mention that my son LOVES the taste of it. I never had any problems getting him to drink it. He was 6 years old.
  3. Yes, I have! With no PANS problems. gave it to my son for a year while he was on Augmentin. The only problem we had was that we had a hard time getting our hands on it, as there is only one store in MN that carries it! If anything I'm guessing it helped my son, but I can't say for certain. We buy knock off Yakuts at Sam's Club now and then. I don't think it's as good but it doesn't cause him any issues! I'm a believer in YAKULT!!
  4. Yes, Keep us posted. Thanks for sharing. How brave of you both to try this. I understand wanting to do anything to help your son. Honestly...The idea of using it for PANS/PANDAS was in the back of my mind after watching the documentary "WEED" with SANJAY GUPTA re: Charlottes Web (LOW THC -HIGH CBD plant.) Hope the healing continues….
  5. Interesting Read: It's a long way out…but could this be promising for our kiddos? http://www.latimes.com/science/sciencenow/la-sci-sn-immune-system-resistant-infection-20140324,0,1442724.story
  6. airial95-Thanks- Great advice, I am starting antibiotic taper with DS5 and I like your idea of rating the symptoms. I have been keeping a daily journal since this whole thing started for us. And yes, when I look back I can see how much improvement there has been. But I've just recorded the symptoms and I use descriptives like "horrible, many tics, etc" and not used a rating scale. I will try this because when flipping through months of pages it will be easier to look at number ratings with symptoms rather than reading it all. It's also useful info. to bring to Dr. appt's. Thanks for the remind
  7. Hello, I was thinking that a link to each other might be helpful. I am also curious...? DS 5 had "Live" Flumist at age 4 in October of 2013. Diagnosed with PANS December 2013. Thank you.
  8. Hello Again, My DS 5 has been doing better on antibiotics (Augmentin for 11 1/2 weeks now), we had the same symptoms after the flumist. I really don't know if it was the antibiotics or not, but it's taken a LONG time. I don't know that anyone could tell me for certain that he would have gotten better without antibiotics "on his own." I've asked myself that same question. But…my mommy gut tells me otherwise. I believe he has been helped by them. FYI-His flumist was late in October 2013, and I still see a tic from time to time. My DS also had the restless leg symptom as well, and I'm seeing that
  9. Hello Meridith, Email this address: medicalinfo@tbdalliance.org asking for LLMD professionals in your area. -it's through a website @ http://www.tbdalliance.org It WORKED for me! I got a response after a couple of days. Good Luck!
  10. May I what SSRI was used? My sons Dr. is considering trying one in the future. Thanks in advance...
  11. Saw Dr. B on Friday & hopeful...m patti- Read the full post…its very informative. Especially her experience with Dr.'s…and her recent exploration of Lyme. "4) Lyme - testing is in the works. Ds5 had a bulls eye that I thought was ring worm. Is it possible that Lyme & co infections are a part of our story? Lesson - in the beginning of our journey, a mom on this forum asked had we explored Lyme? Ah...yes... almost 2 years later."
  12. We are just beginning this journey with PANS/PANDAS, but I want you to know that I appreciate your post and will probably need to reference it again, and again in the near future. I am going to school here on this forum. THANK YOU! I have replied with our story in "Need Advice- New Here"s topic heading, if you are curious. BTW- I am especially interested in what you find out about Lyme, and your experience with this Dr. B, Not sure but Is this the Dr. that diagnosed the Sneezing Girl? Sending positive thoughts your way…
  13. mpatti- I am by no means experienced at this and am not 100% positive this is peer researched paper information, but I've read in a few Lyme forums that if LYME is part of the equation to "stay AWAY from steroids." Please research & look for yourself? The reason I am sharing this is because I have considered Lyme as being our underlying infection as ds didn't test positive for Strep. We have a cabin in the Northwoods of Minnesota that ds has been going to since he was 6 months old. I was worried about chemicals so I can tell you I haven't used a lot of DEET to prevent tick bites. He has ha
  14. Thank you missmom! Unfortunately our pediatrician isn't on board with this PANS/PANDAS diagnosis (yet?!) But I have called the Psychiatry Clinic where he was diagnosed and left a message for the Dr. sharing my concerns, (she's on vacation) I referenced the research in this area and asked if we could taper to a prophylactic dose and for them to consider consulting with Dr. Murphy. Also, ds did have 2 "mini flares" while on this full dose 1000MG augmentin/clav a day, after he seemed to have some type of viral infection, (fever & sore throat.) I would think given that he had those "flares" I
  15. Dr. M had our DD on a pretty hefty dose of Augmentin 600 ES at 55 lb., but I can't tell you what would be right for your kiddo. As far as the taper would go, Dr. M's advice was to stay on the abx until symptoms remitted and then wait until summer break to begin scaling back on the dose. Dr. M has written a ton of medical papers. Have your doctor read those. There's also more info on PANDAS Network you can arm yourself with. http://pandasnetwork.org/treatments/antibiotics/ Was the 600 ES an oral suspension? Did you give it 2x's daily? Sorry for asking more questions... I am SO concerned abo
  16. Thanks Agnes 26! I greatly appreciate your response. "She is wrong. Dr. M tapers. Our ped has had my daughter on Augmentin for more than a year per Dr. M's counsel. I would fight like crazy to keep your kiddo on antibiotics and at a minimum run myco titers." Given this information, I will call the office today to request that our Dr. consults with Dr. Murphy re: Augmentin, dosage length, and discontinuation. I wasn't confident the the Dr. was certain that stopping abruptly is what is done, as she had to go get her notes from the conference to find information. Another question
  17. By the way -I forgot to mention that keeping a daily journal is extremely helpful to see if progress is being made. Since I have been in the midst of my DS's exacerbation, it's hard to see ANY improvement, but keeping a journal has definitely confirmed progress has been made for my DS. I highlight the positives and the negatives before Dr. appt's and bring it along for a reference. I am still on a high learning curve re: PANS/PANDAS, but I am also like you planning what to do next, or at least trying to since I've felt behind the 8 ball for the last 3 months!
  18. This is my first post here. I have been in the midst of my DS's (5) first PANS exacerbation myself (started Nov. 11th, 2013) and I feel a strong connection to your story. As well as others that have posted here that have had PANDAS/PANS children that were triggered by the FLUMIST. Hopefully my post/reply helps you and others to not feel so alone and help you to gleen some insight into the healing that I have I've seen so far. I also have a question, but want to give you all a little history on us first! My DS 5, had the FLUMIST on 10/30/13. 3 days post mist he came down with a fever nausea
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