Jump to content
ACN Latitudes Forums


  • Posts

  • Joined

  • Last visited

Everything posted by adkmom

  1. He's diagnosed with Pandas, all the classic symptoms, tested positive for Lyme through Igenex, at least had it for a year. but we're also dealing with bursts of agression and rage!, irritablity, inability to focus, more neuro symptoms that one doc thought be more Bartonella related. He's on 200 of Azithro and 500 of omnicef. Are your daughter's? doses higher? He's 45 lbs. He's only been on the Lyme treatment for 3 weeks though. His aggression is so unpreditable. Just took him to PreK to drop off his brother and he got angry over nothing and threw a snow boot at the wall (in front of 3 teachers). i was mortified! 2 minutes later he was chatting nicely with all of them and laughing!
  2. Was it a clear case of Bartonella? Doc is wondering about Bartonella with our 4 yr old but I'm told it's hard to diagnose. He was negative on Igenex test. But has more behavioral, neurosymptoms going on than physical ones. Wendy - didn't realize your twins were so young, 1 year behind us
  3. Just wondering if there's anyone on the forum that have toddlers with Lyme? My son is 4. Has had it at least since 3. darlene
  4. Just wondering. Dr. B had said if aggression continues into say May, we may be looking more at Lyme or Bartonella as the cause, not necessarily PANDAS. I guess the cause doesn't matter much...just fixin it!!
  5. Thanks for posting. would love to read.
  6. Can anyone please remind me, I've been over on the Lyme board. Can you get bursts of aggression with PANDAS? Is that not a typical symptom? My ds4 has bursts of aggression (although not always with anger), may just play really rough with toys, crashing and smashing them. thanks.
  7. SF Mom suggested I share this link on the Pandas forum. (it's posted on Lyme as well). It's a great tv news segment (from Canada) about Lyme and includes children's stories. Click on the links on the right side of page. (out of the wild) 2 part video series. http://www.ctv.ca/CT...w5_lyme_091114/ darlene
  8. Glad it was helpful. I thought it was so well done and fair. Look forward to working with Josh.
  9. Just wanted to share.... A great news video (2 parts) to watch produced by Canadian TV. Wish they had something like this in the US. Have yet to see something comparable. First video covers 2 children with Lyme. Worth watching for everyone. http://www.ctv.ca/CTVNews/WFive/20091113/w5_lyme_091114/ Out of the wild: part 1 and 2 darlene
  10. Kara, So sorry to hear how rough things are now. Igenex takes about 10 days for results. The LLMDs typically have a wait. Maybe Dr. B would add a 2nd antibiotic while your waiting for the results. It couldn't hurt to see if she responds. I believe that would be the LLMDs next step anyways if she tested positive. Once Colin came back with positive Lyme, he started zithro. that alone didn't seem to help and the LLMD added in Omnicef, which seems to be helping. He too was having rages and aggression along with other behavioral symptoms. It decreased substantially with the 2nd antibiotic. Just a thought. Hang in there. darlene
  11. Hi there, If there's any graphic designers out there interested in helping our awareness campaign could you please PM me? We're looking for someone able to design a logo for Children's Lyme Disease Association. (a new group). It would be printed on media releases. thanks, thanks much. darlene
  12. Mati'sMom - your box is full. Hi Matismom, Just wondering if your son presented with Lyme with neuropsych/behavioral symptoms? How long has he had it do you believe? And is he seeing an LLMD in VA? How is the treatment going? Whenever you're free, can you respond to darlenemcmahon@frontiernet.net ?? Thanks and glad you seem to be on the right path now! darlene
  13. Tami, My son complained of itchiness all over, no redness, after starting combo abx. went away after a few days. he could function though. didn't seem to bother him too much. Can't recall your situation, did your son present with OCD as Lyme symptoms or did he have physical symptojs as well? what state are you in? darlene
  14. anyone around that day? would love to meet some others in our situation. we'll be at the doubletree. darlene
  15. Kristie, Did you get the email from my personal account? was having trouble with it. Did Beals say anything about the voice issue? vickie, He takes the liquid. But the raspiness seems to be disappearing, right along with the blinking/grunting tic. Maybe it was herxing. By the way, are you dealing with Lyme as well...I thought just Pandas? darlene
  16. Dr. B's office thought it could be from all the grunting/throat clearing tic that he's had for the past 2 weeks. He's stopped that tic (for now), so we're going to see if his voice clears up as well. Such a guessing game!!
  17. Not sure what they can offer. But there's LymeAid4kids. I believe it's through the LDA website.
  18. I read in Dr. Burrascano's paper about Life Pack multivitamins. Available through Pharmanex. But not sure if they have them for children.
  19. Our ds4 had was herxing on the plane ride back from Florida. Once we made it into the airport, I literally went to the corner and cried! I was exhausted. 3 hours on the plane with non-stop movement, over chairs, under chairs, talking loud, yelling about the noise of the engines, kicking anyone who would try to calm him down...it was interesting! AND, the pilot invited him to the cockpit. God, was I a wreck. He didn't know who he was dealing with. My advice: NEVER change meds while on vacation.
  20. Tami, I'm over on the Lyme board mostly now. But my ds4 diagnosed Pandas initially then to my surprise and Dr. B's he tested positive at Igenex for Lyme. Basically, if you have positive 31 that's Lyme specific, so he definetly has it AND he's had it for at least one year. 41 is another band that indicates a definete LD. You may want to post on the Lyme board and you'll get a lot more experienced mom's giving you advice. darlene
  21. Can you please PM me if you'e had any experience with Dr. Horowitz in Hyde Park, NY? thanks.
  22. We order vitamins (liquid) from Youngevity.com The vits are excellent and have heard the owner speak a couple of times. The site is a bit flashy and somewhat difficult to navigate but the products are all really good. Thanks. I'll check it out.
  23. Has anyone experienced a raspy voice (sounds like he's getting laryingitis) with their child? ds is on azithro and cedfnir. Can't imagine him having strep with all those antibiotics? Symptoms also appear a bit worse, along with the voice change. thanks for sharing. darlene
  24. Our LLMD suggested adding ds4 vitamins. Anyone suggest where to get them or brands? He's only 4, so I'm looking for liquids and they seem pretty high doses. Vitamin D, 1800 IU Magnesium, 130 mg Omega 3 (400-1000 mg) CoQ10 - 100 mg. He takes Culturelle but not sure if it's enough dosage. thanks for any guidance!
  25. Kristy, Can't give any advice but hope you feel better soon.
  • Create New...