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SEAMom last won the day on January 5 2016

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  1. My DS15 has had a rash that comes and goes. It always shows up during IVIG but it is kind of like a hot flash.and in that it only stays for 1-10 minutes and then goes away. It is not raised - just red and has presented two ways. It is on his chest, shoulders and neck. It is is large red splotches or it is a weird non uniform outline (kind like the grout in a walk way flagstone. The rash also shows up occasionally in between monthly IVIGs. It showed up yesterday and it is 28 days post his last IVIG. My son's immunologist and neurologist do not have an answer for the rash. My son has had some great success with IVIG and steroids but nothing is holding. I feel like this rash has to be a clue but I don't know for what so I thought I would ask if anyone else's child has experienced this rash and know what is means? Thanks for your help. Also - he has been tested by IGenix for Lyme and co-infections and was negative.
  2. My DS15 had his 7th IVIG on Tuesday & Wednesday this week. He woke up yesterday (Saturday) with a migraine like headache which he gets about every other infusion. We got the headache manageable and then in the afternoon he started to complain about his body hurting. Then he was complaining about being hot and cold. I checked his temperature and it was 100.8. I called the immunologist on call. He thought it was a "sub-clinical latent infection/virus" that was triggered/irritated/awoken by the IVIG. My DS was already on tylenol and aleve. The aleve was just about out so I switched to Advil. It did nothing. His fever conintued to climb to 101.5. Finally gave him 2 extra strength tylenol a little early and that seemed to stop the climb and his temp slowly started to decline. When I was able to get his fever back to normal he was really struggling and had one of his worst flares I have seen in months. Some of the most dramatic chorea movements I have seen in the past year since he went on his first antibiotics a year ago I continued to wake him every 5 hours through the night and give him more tylenol to keep the fever down. He is ok this morning. Just extremely tired and wiped out. Has any of your children experienced this post IVIG?
  3. Hey would love some help from seasoned mold experts. We have a cabin that we purchased last year. After purchase we suspected mold or mildew in the bathroom because of the smell. We finally got a contractor to look into in. Sure enough the toilet was leaking and there was black mold everywhere underneath the carpet. Another reason to never put carpet in a bathroom!! Gross! The contractor says he is going to treat the mold properly to irradicate it and make sure it has not gone into the drywall. Is this enough? My DS15 who has PANDAS was tested for mold and has a sensitivity but really has no exposure at our home so it has not been an issue. We don't go to the cabin except in the summer. I can get an air purifier set up in the cabin after the clean up to rid the air of any spores. Is this enough or do I need to hire in a professional mold team? Thoughts?
  4. DS is one year on Augmentin 875mg x 2day. Monthly IVIG. but my boy is 132 lbs - Dr. says he has to stay on this dose until symptom free for a year and then she will decrease. The Dr. also ants to also put my dd on abx. My dd does not have PANDAS but catches Strep all the time which is a huge problem for my PANDAS son. She has brought strep home 4 times in the last 11 months! Dr first talked about a weekly Zirthromax but then was talking about a weekly Amoxicillian since that was used to treat her strep. It was my understanding that Amoxicilin stays in your body for such a short time that it would not be effective as a one dose weekly. Is anyone doing this? Thanks!
  5. What prophylactic antibiotics are your doctors prescribing for STREP and at what dosage and frequency? Any advice as to when was a good time to switch from a full dose to a prophylactic dose? Thanks!
  6. My DS15 who has had PANDAS since March 2015 has used the screen as his coping mechanism. When he is most symptomatic he had used screen time - video games/tv and building LEGOS as his escape from his frightening reality. Paralyzing anxiety being his worst symptom. The screen or a lego at times have been the only thing that have helped pull him out of terrifying episode. I too have worried that he spent way TOO much time on a screen. What has helped is that during his periods of healing following IVIG his screen time decreased. I also listened to a lecture from a PANS conference on YouTube. The speaker was a pediatrician who specializes in PANS. Her daughter also had PANS. She said all our patients for the most part are addicted to screens as a coping mechanism, her daughter included. The reality they face without it at times is too scary. As our kids heal this attachment will lessen. This gave me some comfort and less worry. I know that some of my extended family members think that if I just take away the video games my son will get better. Or if they take him away on a trip he will get better - like our house and the screens are the problem. Of course I know better and ignore these requests. The IVIG is slowly working and he is back in school part time. The only thing I had to cut out was some of the violent more mature video games - they tended to provoke anxiety. This Is probably not an issue for most of you with younger kids.
  7. I just got the results back from our ND. She in not in the office and I don't have an appt until next week. The test was for the IgG31 kDa Epitope test. We did this specific test because IGeneX recommended this additional test because my DS's results for the Western blot were ++ 41, +58 and indeterminate for 31 and 39. The results are below: Non-specific antibody for B. burgdorferi - NEGATIVE Specific antibody for B. burgdorferi - POSITIVE So what does it mean? Does that mean he has lyme? Also his IgM Western Blot which was done with the first tests was 41- indeterminate. No other results. He tested negative for all co-infections except he tested positive for HME (Ehrlichiosis) IgM - 80 (anything <20 is considered negative) IgG <40 (anything <40 is considered negative) Would love your help and wisdom! Thanks!
  8. it sounds like the augmentin is not working and it would be worth trying a different antibiotic. You usually get some relief in about 48 hours. I would give the prescribing doc a call and see if they will write you a new Rx.
  9. Oh yes HPV for a boy. It is recommended for all boys now because the boys carry the HP virus. If the boys are not carrying it the girls won't catch it. My bottom line is to steer clear of that vaccination and teach your daughter's to get their regular PAP's and they should not get HPV or cervical cancer. I would have never given any of my children the HPV with what I learned about it after it was done and too late. It is not medically necessary nor required.
  10. Thanks for all the referrals. Nice to have so many options!
  11. Nickelmama - disregard my question about the plasmapheresis - not enough coffee this morning and I got my messages mixed up.
  12. Thanks for the info on the IVIG - that makes more sense to me now. I was reading some previous posts about lyme and I am starting to put the pieces together. The ND and me always clung onto the PANDAS diagnosis because my ds older sister kept getting strep and my ds kept flaring every time she did. His first onset was two weeks after my dd had strep the first time but it was also 4 days after my ds had his 2nd HPV vaccination. I called it the perfect storm. But he never had very elevated titers. The ND and I think the Lyme and the ehrlichia were dormant up until this point and then all broke loose. It makes sense why the IVIG won't stick. What treatment did you use that has been successful for ehrlichia and lyme? Did you do the plasmapheresis before the lyme diagnosis or after?
  13. he has been tested for the other co-infections and they all came back negative. Thanks for the video link! I will check it out.
  14. Hey has anyone's child been diagnosed with Lyme and/or Ehrlichiosis and only had neuropsychiatric symptoms only? My DS tested positive for Ehrlichiosis and we are waiting for a second test for Lyme as the first one was inconclusive. My DS has PANDAS for sure but his recovery has been slow and does not seem to stick. He had his 3rd IVIG at the beginning of December and he made about a 95% recovery that lasted about 28 days and now he is about down to 25%. He never had a known tick bite or rash. However he did have exposure to tick areas and outdoor activities and he did have really weird memory, auditory processing delay and vertigo after a camping trip in Montana. I blamed the symptoms on a fall the week before he left. We thought he had a concussion that we missed. But looking back at it now it so easily could have been something else... He has never had joint pain or muscle aches. What about false positives on these tests too? IGenix said that my DS just had to have 2 weeks since his last IVIG before the blood draw - we had one month in between. What is the chance that he received Lyme and Ehrlichiosis antibodies from the IVIG? What is weird is that he only tested positive for IgM (current infection) for Ehrlichiosis (HME) and negative for IgG. He should have some IgG (past infection antibodies) because he has not been outside at all the past 10 months since he got sick. The first possible tick exposure was 14 months ago. This maybe just a wild goose chase! Would love to hear some of your wisdom on the subject.
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