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JJMom39

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Everything posted by JJMom39

  1. I posted this on the Lyme forum also, but since many here see LLMD's in addition to PANDAS docs I thought I should post here too. We are looking for an LLMD. We are in OH, and there are only 2 in the state, one of whom is not taking new pediatric patients. I am open to traveling, so any names of docs in surrounding states (IN, MI, PA, KY) AND beyond are appreciated. I would like to keep travel to 12 hours or less if possible. That would include the mid-west, some of the north east (NY, CT, NJ), south through the Carolinas and Georgia. I am aware of Dr. L in Indiana and Dr. T in Michigan. E
  2. S&S--thank you for the cyber support. We are only 4 days into dealing with probable Lyme diagnosis and it's a lonely place to be. After 11 months of dealing with ds's PANDAS diagnosis I was just starting to feel like I had a handle on things. This is a whole new world.
  3. DS9 recently tested positive IgM for Lyme via Igenex so now I am looking for an LLMD. We are in central Ohio, but I am willing to travel. I have a few names to pursue that I received through ILADS, LDA, Lymenet and a couple of forum members here. If you have any names or leads I would really appreciate them or you can PM me. Thank you for any direction. It seems as though it's like looking for a needle in a haystack.
  4. We recently rec'd DS9's Igenex results. I have not yet spoken with our PANDAS doc who ordered the tests, but I did speak with his nurse and I have a copy of the results. I have spent a lot of time looking at information online about how to interpret the western blot, but it's all still a bit like a foreign language to me. His results were: Single + on bands 41 and 31 and IND for band 83-93 for IgM. His IgM was considered positive. He was IND for band 31, IND for band 39, double ++ for band 41, and single + for band 58 for IgG. His IgG was considered negative. He was also negative for al
  5. My DS9 is taking Augmentin 2000 mg BID and azith 500 mg once per day. For several months last year he took azith as prophylaxis. He took 500 mg twice per week. There is no standard protocol for prophylactic use. I have seen mention here that some kids take it once per week, twice per week or three times per week, and there might be still other approaches. Different doctors have different approaches with dose and frequency.
  6. I am wondering how those who have kids on daily azithromycin for PANDAS get their insurance companies to pay for a 30-day supply of the medication. Ds9 was taking prophylactic azith (two 250 mg tablets twice per week), and our insurance would only pay for 6 pills at a time. Although it was annoying, it was manageable because we used our allotted 6 pills every 10 days so refills were doable. But now, he will be taking 500 mg per day (one 500 mg tablet). Our insurance will pay for three 500 mg tablets at a time, so that means I will have to order a refill and pick it up every 3 days!! It seems t
  7. Thanks for all the responses. I called our children's hospital lab and they said they will do outside test kits for a draw fee so I will start there. If we have issues I will move on to LabCorp or Quest. The papers included with the test kit say you can ship the blood Mon, Tues or Weds. This kind of thing causes me extra anxiety! Fortunately ds handles blood draws well, but I think about all the things that could go wrong with the collection or the shipping or the whatever. I've about convinced myself we won't be able to find anyone to do the collection. I have impetigo right now and my OCD/an
  8. Getting ready to do Igenex testing for ds9. The holiday really slowed down our receipt of the test kit so I have to have the blood drawn tomorrow if at all possible. For those who have done the testing, where did you have the blood drawn? Did you go to a lab like Lab Corp or Quest? We have done all of our standard blood work through the lab that the children's hospital here runs, but I don't know if they will do this type of draw or not. It's way too late to call tonight so I am trying to come up with a plan for tomorrow. Thanks.
  9. Ds9 has been taking Biaxin 500 mg bid for the last week, and is also on Augmentin XR 1000 mg bid. He has been having mood swings and is and angry and irritable since starting the Biaxin. We do not know if he is herxing or if he is having an adverse response to the Biaxin. We started Ibuprofen last night and it seems to be helping, but I want to add in some charcoal to see if that will help also. I have never used charcoal so I am not sure what is the best dosing schedule when one is also giving abx and probiotics. He takes both antibiotics at breakfast and dinner, and he takes probiotics right
  10. Ds9 has been on Biaxin for 5 days. He is taking 500 mg bid. He is also taking Augmentin XR 1000 mg bid. He has been on the Augmentin for over 2 months. Dr. B. added in the Biaxin to see if we could gain further improvement and reduce the number of exposure flares. About 3 days into the Biaxin ds started showing increased defiance and sassiness and some emotional lability. This has not been constant, but rather comes and goes. He was better yesterday, but today these symptoms have increased again and it's not pretty. I can't say for sure if this is related to the Biaxin, but nothing else has ch
  11. When we were there he did not have lab services in his office yet so we took the lab orders home with us and had labs drawn here so it was not necessary for all family members to be at the appointment. He told us at our appt that his office would be getting lab services in 2 weeks (that time has passed now) so I am assuming that you will be able to have blood drawn while there. But, that doesn't mean you couldn't have some family members' labs drawn at home. You could call the office and ask how they prefer to do it now just to be safe.
  12. We went to see Dr. B. for the first time a few weeks ago. We had a wait of 6 weeks. I was expecting a longer wait. I do think he is running longer now because of the holidays. If you think you might want to see him, make an appointment now, and if you change your mind you can cancel later. Our first appt. was very much about Dr. B. going through my ds's history--onset, symptoms, response to the abx we have tried, other illnesses he has had, his recent flare up's and his response to meds tried, his response to steroids. We also discussed some family history; my other ds and his possible sy
  13. I too am beyond thankful for this forum and everyone who posts here--those who have been here for some time who help inform and guide those who are new; those who are making their way through diagnoses and treatment options and all that these things bring; and those who are new and looking for answers, information, and support. There is such an amazing range of knowledge, experience, and compassion here. My son would not be where he is now without what I have learned from this forum. And I can't imagine having made it through the last 9 months without the support here. I am so grateful my
  14. My non-PANDAS Ds had a constant dry cough for weeks and weeks. The ped's office kept telling me that as long as there were no other symptoms to just keep an eye on it and it would go away eventually. At the time they were seeing a lot of coughing going around from various viruses. I continued to check in with the office and they kept telling me to wait. After vomiting at school because he was coughing so hard they finally paid more attention to his cough. It turned out that he was having silent or wheezing asthma that was induced by allergies. That dry cough was his only symptom. Very frustrat
  15. I too want to extend my immense gratitude to Vickie, Tammy and Sarah for all of their hard work putting the P's Parents Meeting together. The time and energy spent organizing the event was obvious on every front! Thank you for giving us a venue to make connections, share information and gather inspiration. And a big thank you to the presenters and sponsors, and all the parents who attended. It was so helpful to meet other families facing the same challenges and to gather wisdom and encouragement from all who attended. It was very beneficial for my husband to meet other dads as well. In the pas
  16. Our ped neurologist initially suggested 500 mg of azith one time per week as a prophylactic dose, but our ped didn't think that sounded like quite enough so we are on 500 mg two times per week (Mon and Thurs). If ds has a known exposure or there is a lot of strep floating around the school we go to 5 days, giving 500 mg the first day and 250 mg for the next 4 days. Ds weighs 80 lbs.
  17. Bees, I am so happy for your son's continued progress. Sending good thoughts for continued health and healing!!
  18. I have to ask something that may sound odd. I am fairly new to this all.....are you saying that PANDAS did not start until after the blistering treatment at the Derms office? Is there a connection there? Curious because my ds had the same thing done (blistering agent) in Dec and January the PANDAS stuff started for the 1st time just out of the blue it seemes, not that we knew at the time what was going on though. I am curious about this also. Nicklemama you said your ds had an ear infection and then PANDAS, a couple of months after the blistering agent treatment. Do you think there is any
  19. Thank you all again for the many thoughts and ideas. I am feeling much more positive that we can get rid of ds's warts without the squaric acid or the other more invasive procedures. We had been using duct tape since the beginning of the summer and it had helped some, but ds will not keep it on all the time. It gets in his way when he is writing, and he will also remove the tape so that he can pick his finger! That is why we abandoned that method. Last night I decided to try apple cider vinegar since we had it on hand and I wanted to start something since his warts are getting big again. I had
  20. Thanks for the input, everyone! My ds has been taking Olive Leaf for several months, not for the warts but as part of his general supplement regimen. I have not noticed any change in the warts since he started taking it. I am going to look into Zymaderm and/or thuja.I don't know if he will be able to tolerate the 5-6 freezing treatments the dr said it would take if we go that route, and the idea of the squaric acid is not sitting well me with. Nickelmamma, you asked if the squaric acid is a blistering agent. I'm not certain--in the information I read it's called a "contact sensitizer." When
  21. My ds9 is a compulsive skin picker. He picks the skin around one of his fingernails, and this has resulted in some nasty warts. We went to the dermatologist today to have them frozen off, but the dr. recommended that we consider another form of treatment. Because the warts are right next to the fingernail he said freezing would not be as effective because there is no way to get into the skin fold. Most of the warts will be affected, but they could return because of the areas not exposed to the freezing. Instead he recommended using a substance called squaric acid. This is method of removing wa
  22. That's great!! It's wonderful that PANDAS is getting more local and national press these days. I am in central OH, and the health reporter for one of the stations here is in the midst of putting together a story on PANDAS. The reporter is my neighbor. We are not being interviewed because it's a conflict of interest for her, but through a local dr to whom I referred her she found two families whom she will be interviewing for the story. She also interviewed the dr. It looks like this story will run at the beginning of Nov also. She became interested in PANDAS when the sister station in Indianap
  23. Thanks for the input, Nancy! We decided to keep ds home for the week. He is on a prophylactic dose of azith, but I bumped him up to treatment dose, which is the plan we have in place when there has been an exposure. But even with that we decided to err on the side of caution and keep him home. His school is very understanding of the situation so we are working from home and trying to stay caught up. There were a few other kids in his class out sick yesterday but we don't know why at this point. His teacher sent an email to all the parents asking that they watch for strep symptoms and have them
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