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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 reminder to watch for patterns as well. Great Info.! Mpatti- Yes, we went to the Dr. to get our children vaccinated to prevent them from getting sick, with the best intentions. Unfortunately, for me and my DS it backfired with the "live flumist" My DD7 had it at the same time and is fine. No PANS/PANDAS for her. How could we have known? But.. Do I wish I could turn back time and not have gotten it for him? Yes. BUT... Maybe this is a warped way of looking at this…. Could it be that possibly the storm was already brewing and having this full blown PANS exacerbation was a blessing in disguise? To be able to catch it early on in his life???I don't know? nicklemama- Thanks for the post with your insight.. and I'm so sorry you, your family and your son has had to suffer so much….You are an awesome mom and thanks for helping us out with your experience and wisdom here on this forum. Praying for healing…and discoveries in research.
  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 at bedtime. He has missed a LOT of preschool due to separation anxiety, and is still showing some OCD. But he has improved. Maybe about 75% back to baseline. We are just starting his taper from Augmentin and will go to prophylactic PEN VK after. This frightens me. I'm worried it will all come back! I don't think this answers your question.. but I wanted to let you know that I struggle with that same concern as well and wanted to let you know our experience so far. I am also afraid he will have another exacerbation and the antibiotics won't work the next time.( I've read that that can happen.) I am also waiting on the results from the research being done on IVIG for PANDAS/PANS. Praying for us all….what a nightmare!
  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 had many, many insect and who knows what other type of bites. He swells up with even a gnat bite, so he has had many " odd rashes" so to speak! Our home is also in an area with a LOT of ticks as well. We also have two four legged friends as well, that could bring ticks into the house. (For you dog lovers~ A Boxer and a Golden) But.. I am still researching all of this and trying to figure out what my son's underlying infection is. I also am planning to test for Lyme in the future after speaking with Elizabeth Maloney, a Lyme expert, (Not the Saving Sammy Maloney) but was told (by her) to wait, as antibiotics would not help with test results. Possibly PANS can be triggered by Lyme, so don't be so sure it's not PANS? Maybe post again so the "Lyme experts" will chime in, as I am very inexperienced. It would be beneficial to me as well to get some advice in the Lyme area from these ANGELS on ACN Latitudes! For now, I am going to try to keep my ds on Augmentin at least until summer as per the much respected advice I have gotten here! My son as you may remember has not been given Steroids and is improving SLOWLY on the antibiotics alone. He is not the same as he was prior to the FLUMIST but has improved. He is maybe at 75% baseline. Agnes26-Thanks again, for the information~ I am forever grateful! I left a message with our Dr.'s nurse today, re: my concerns on the abrupt stopping of Augmentin this Friday. I cited research regarding prophylactic Antibiotics and mentioned a connection with a parent of a child with PANDAS, and your experience with Dr. Murphy's protocol. (Not to say it hasn't changed) and that perhaps she could consult Dr. M?
  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 have some evidence that a Prophylactic dose would be prudent. You are right about spring being a time for of all types of illnesses popping up, allergies, Croup, Strep, etc.! I will also use that concern to discuss with the Dr. as to why a prophylactic dose would be wise as well. It is so concerning to have our kiddos on these drugs so long, but the alternative, thinking about a worse exacerbation is frightening. This road seems so long : ( You all are amazing, to be so helpful! Thank you!
  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 about this issue, as we have seen much improvement and I don't want ds to backslide, or.. (as I have read) have a more serious exacerbation if it were to happen again. I am looking up information on this at the PANDAS Network site as well. Again, I am very grateful for your help!
  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: what would a maintenance dose of Augmentin be? (50 lb 5 year old) -and tapering dosage? I'd like to be informed prior to our next appt. Thanks!
  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, and slept a lot. At first I just thought it was viral infection. I gave him Ibuprofen, fluids and let him rest. A few days after his illness he started acting unusual. Stripping his clothes off, making growling noises and saying he felt like his skin was burning. He also was still complaining of nausea. For about a week he acted strange, very impulsive and regressing in his behavior. He started carrying his "tee tee"(baby blanket,) and mouthing everything in sight! I didn't make any connection at first with the flumist until on Nov. 12th, 2013 (his 5th b-day) the explosive exacerbation happened. He began full body tics, snorting, high pitched screaming, and having OCD "bad thoughts" and asking repetitive questions. Everything had to be his way, or he would have a complete melt down. He also had urinary frequency, aggressiveness, and could hardly get to sleep at night. He was completely off the wall in his behavior! I didn't sleep, or get out of my pajamas for 2 days. It was so very frightening to see my son become a completely different child overnight! In the middle of one of those sleepless nights, the"lightbulb" turned on, and I wondered if the flumist could have caused this? I searched the internet and made the connection here on ACN latitudes that yes, it could be an autoimmune/(inflammation in his basil ganglia) response to the mist and possibly PANDAS/PANS? I brought him to our pediatrician on Nov. 13th, explaining to her that I believed he was having a reaction to the flumist. To make a long story as short as I can, I sat there for 2 hours and still she couldn't explain to me what was happening. I was referred to a developmental pediatrician, then a psychiatrist who finally diagnosed him December 11th, 2013, with PANS, after 2 months of heartache! (In desperation, I live in MN, if I couldn't have gotten him help, I was very close to hopping on a plane to go to Chicago to see Dr. K.) My son has been on Augmentin chewables 1000 MG per day, since Dec. 11th. (400MG in the am, 200MG in afternoon, and 400MG at bedtime.) We have seen much improvement since going on the antibiotics. He is about 75% back to himself. We very much have been seeing the sawtooth pattern of healing, 2 steps forward one step back! Just when I feel he is doing better something will pop up again. He's also had two illnesses with fever and sore throat while on the antibiotics that caused "mini flares." He is on probiotics, and I am giving him Epsom salt baths. It's painfully SLOW! He has missed a lot of preschool. It feels like it will never end! Question for you all- I am very nervous and scared, his Dr. wants to discontinue his antibiotics this Friday (after about 9 weeks.) She wants to stop abruptly, no tapering of his antibiotics. Is this the way the "PANDAS Specialists"do it? She doesn't believe in long term antibiotics. My Dr. had also went to a conference in the fall of 2013 and thought that this was how Dr. Murphy does it. She hasn't made any mention of steroids, or IVIG. I doubt she will go beyond giving antibiotics? The only tests run were strep titers, which were normal, so she is calling this PANS. I have not ruled out going to see Dr. K., in the near future if need be, but don't really have a choice at this point but to follow her direction. I do feel very grateful that I got the antibiotics with out a positive connection to a STEP test/or titers, but I am very worried everything will go back to where it was in the beginning! Any advice? Thank you all very much for taking the time to read this and for all of the information posted on this website! It has been a source of comfort in a very weird and frightening time for me.
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