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colleendonny

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Everything posted by colleendonny

  1. Does anyone use transfer factor? And if so, which brand? Have you noticed any improvements? Do you use it under the supervision of a PANDAS doctor or LLMD?
  2. Kara, so happy for you! And DD!! I love to read happy updates
  3. Thanks for the advice ladies. He is just so young, 3 1/2, that I have a hard time deciphering who he REALLY is, know what I mean? He started with slight symptoms at 29 months old, after DD's onset. But the tics I know aren't "normal". He was okay prior to starting abx. We put him on the Augmentin, due to a rash on his back, which Dr. B thinks could be impetigo. And for his emotional lability. I may see a slight change in his emotional lability, for the better. I really think we are dealing with Lyme here. I just need to send out the IgeneX test. I just did one for my youngest DD, and
  4. My DS 3 has just been put on Augmentin. It is 600mg, 1/2 tsp, 2x daily. It just started on Wednesday. Yesterday I noticed throat clearing, which he has never had. Today I still notice that, along with opening eyes wide, and sometimes opening his mouth while opening his eyes. I'm guessing it could be a herx. Lyme and Co were negative through Clinical Labratories. But, we still need to do IgeneX, which we hope to do in the next two weeks. If it is a herx, what should I be doing? I did give him some Children's Advil. And if it is him not detoxing from the meds quickly enough, what can I do? I
  5. I already am a fan! Is she still looking for children to be in the documentary? We are in the Boston area.
  6. I picked up some today for DD6 for detox reasons. She is currently on Clarity-K per our LLMD for detox help. I haven't really seen a difference in using it. She started with a flare over Christmas with flulike symptoms. We did add in zith, in addition to her Augmentin, at the first sign of the flare up. This time around, her flare up was very mild, but it is still not gone. I'm looking for detox help. Maybe it will help a little. I got the 365 brand from Whole Foods and the tablets are 100 mgs. What is the typical dosage? My DD6 is about 55 pounds.
  7. I would appreciate a PM as well. My three little ones have been seeing him for the last 13 months. Thank you.
  8. Hi, and welcome. I am sorry to hear of your daughter's struggles. I am not a patient of Dr. T, but I do think you should keep trying to get a hold of him. How about setting up a phone consult and paying for it? As for a LLMD, we see a wonderful one. Where do you live?
  9. Maybe Augmentin? See if they will check his titers too.
  10. Hi, I am not aware of any in Southborough, but I attend one, once per month in Whitman. There is also one that meets in Salem.
  11. I don't really know the answer, but I just wanted to chime in and say that I hope things get better soon. Hang in there.
  12. My son is homozygous A1298C, and PANS. I would never have known he had PANS it it were not from his sisters overnight onset. He also started a stutter overnight when he turned three. Like LLM, my son has rages and rigidity. He hates to be told no and will let you know. He is extremely impatient. While every one who has the MTHFR mutation likely does not have PANS, I am sure having the mutation is just another piece of the puzzle. There is an MTHFR support FB page. I plan on making a phone consult very soon with one of the doctors, Tim Jackson or Ben Lynch.
  13. It went good. The speaker was informative. OCD is tricky. Hard to imagine having it, even though our kids LIVE it.
  14. I got bloodwork back today for Lyme. My only reactive band was IgM for band 23. I am so paranoid. I have 2 PANS kids and our PANS doc suspects it in my 19 month old. She had some sort of eye blink tic when she was 7 months old. It has since not came back. She does walk on her tiptoes sometimes. She is currently on a 3 week rx of Augmentin now for sinister infection from our pandas doctor. My concern is that she is still breastfed. what are you thoughts on this while nursing? I am waiting for a call from our LLMD as well. Thanks for any input.
  15. In my house, we have 2 kids as diagnosed, and 1 who we think. She is 18 months. Moms ages at kids birth was 22, 24, and 26. Dad was 24, 26 and 28.
  16. My DD6, is doing well right now, and is in a flare. She had overnight onset back in October 2011, when she was 4. She stated abx 6 weeks later, so we caught it relatively early. (I knew what it was 5 days in, but waited for our appt. with Dr. B.). This is her 3rd flare. She became sick with what I think was the flu on Christmas Eve, and by the day after Christmas, she said that her PANDAS was coming back. (Intrusive thoughts and her brain repeats "bad words" repeatedly). We immediately added in azithromycin in addition to her treatment dosage of Augmentin. And now, 1 week later, her symptoms a
  17. I would say Dr. Trifiletti. You could see him in NJ or have a phone consult set up fast. Otherwise, set up an appt. with Dr. B in CT. But he has about a 6month wait. Best of luck to you.
  18. This is my daughters main PANDAS symptoms is the "bad thoughts". She has been on treatment dosage augmentin for the last year. She just started a flare, mostly bad thoughts, and we have added in a second antibiotic, azithromycin. This time around her flare is very mild. Her first exacerbation ever, in October 2011, it did seem as if her mind was CONSTANTLY racing.
  19. My daughter had almost double the normal B12. Dr. B isn't concerned, nor is her LLMD. Still worries me somewhat.
  20. I would say to maybe go to a minute clinic or something to check for an infection....How long has he been off abx? How long was the course or abx?
  21. Hi Kara, Just seeing this. Can't see the date. PM me if you can or send me an email. Colls23@aol.com Hope all is well.
  22. I am curious about this as well. My DD5 Complains often that her eyes are blurry.... We have an eye doc appt. next week.
  23. I am curious about this as well. I did nurse my son, who turned 3 in July. He is diagnosed PANS and was breastfed for 16 months. I am currently now nursing my daughter, who is 16 months. She had what I think was an eye blinking tic, that was on and off, for a few months, starting when she was 7 months old. I was nursing her the while time and there was no improvement with the eye blinks. If it can help, I will pump for years!
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