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TraceyB

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  1. His IgG numbers are very low, so yes he has a compromised immune system. I was thinking of trying a new therapist. Should we consider changing antibiotics again?
  2. My son still seems to be deteriorating (intrusive thoughts, terrified to be outside, rages, seems psychotic at times). His regular lab blood work came back showing negative for bartonella. Could he still have bartonella? Coudl this be from the steroids? Could IVIG get him out of this state or should we wait it out until he stabilizes? We did swab his nose to test for MRSA and are waiting for the results.
  3. One more update: I just got a call from the pediatrician that my daughter's sore was MRSA. The doctor said my son couldn't be affected unless he touched it, but I'm not so sure.
  4. We also stopped the steroids a few days ago (5 days early).
  5. He seems a little better the past couple of days. Our naturopath said to give the Rifampin more time because she would expect to start seeing improvement around this time (day 7). It could have been a herx or that it just needed time. She also suggested L-theanine for the anxiety and I think we will try it today (trying to slow things down so we can see what is working and what might cause more flaring). I'll have to look at GABA too. My daughter has also been on antibiotics for her skin rash (staph?) since Monday and I really wonder how much exposure to her infection affected him as well as the wasp bites from last week. This whole thing is overwhelming at times. I am thankful for a bit of peace the past couple of days. Thank you for your suggestions!
  6. Thank you so much for your thoughts! Now that you bring up steroids being contraindicated with Lyme, I realize I did know that at one point. I think we were so desperate to stop his decline that I ignored it. That is a really good point about IVIG. He obviously still has something going on, and it is going to be a lot of money. He takes curcumin and Aleve 220 mg twice a day as well as Copaiba essential oil for inflammation. Maybe we should up the Aleve? The only thing he takes for detox is NAC and I sneak epsom salt in his baths. What do you do? We do see a LLND and Dr. P. Good point about the pool. I think we need to slow things down, finish the steroids, stay home and see if he can stabilize. I wonder if the Rifampin is enough to also cover the Lyme in addition to bartonella. Ugh. I think us moms should earn honorary PhD's in PANS/PANDAS!
  7. I am hoping to get some help making sense of our current flare. My son got PANS when he was three, but he really fell off a cliff two summers ago at age 7. It wasn't until last summer that we began treating it as PANS with Dr. P, and by October had determined mycoplasma and HHV-6 as triggers. Two steroid tapers and 6 months on azithromycin and his infection numbers were down to nothing and he was doing well (making new friends, laughing, his personality back). However, his IgG numbers, which were very low in October, continued to drop. We planned on doing IVIG this summer. In early June he had a tick bite with a bulls-eye rash and began treatment that day for Lyme. Unfortunately, he has been declining as the summer has gone on. He did two weeks on doxy, a week and a half off before we realized he was still being affected then two weeks on Ceftin. Last week he became very aggressive which had not happened since two years ago so we started a prednisolone taper. We were also just denied IVIG coverage by our insurance and are planning on paying for it ourselves. He just switched from Ceftin to Rifampin three days ago in case he has bartonella. On top of all that, he was stung four times by wasps last week (can that cause flaring?) which has restarted a major bee/hornet phobia and has him scared of being outside. He also just started saying he hates the feel of water which takes away our only activity this summer of swimming. He is scared of everything, says he "doesn't feel right" and has started saying he wants to "go home" which in the past has meant heaven. His sister also has an open sore on her bottom which could be staph (we are having it looked at today). Can this be causing the flare? I am a wreck trying to trouble shoot and keep my own mental health strong. I am anxious to do IVIG as soon as possible to alleviate his suffering and give him time at home before school starts, but I wonder if we have all the possible infections covered. Any thoughts? I would also love advice about preparing for IVIG. Did it help? How did you keep your child calm? Do they need other medications at the same time to make it more effective? Any questions I should be asking of his doctor? Thank you for your advice!
  8. He tested negative for lyme using the western blot. We have an appointment with a lyme literate naturopath in a couple of weeks. It really seems like the steroid taper made a difference which it seems it would not have with lyme - is that correct? We have not looked into mold.
  9. Hi, I am new here. We think my 8 year old son has had PANDAS/PANS for 5 years. I found out about PANDAS/PANS a year ago but was talked out of it by providers until earlier this summer when he flared again. He is finally being treated at MGH. So my question is what to expect now. So far this summer, he has been on amoxicillin (1.5 weeks, no effect and came down with bronchitis), ceftin (1 week no effect), ceflex (15 days no effect), and augmentin for the past 4-5 weeks (some improvement at first especially with appetite, but not sure). Because we wanted to do everything we could to improve things before school, we tried a 25 day steroid taper. we have seen really wonderful results from it up until the past couple of days. We only have 6 days left on the taper. Also, since the steroids were really interfering with his sleep we broke down and started melatonin again 4 nights ago (I had read it lowers the effectiveness of steroids). The last two days we have seen his anxiety ramping up. Any thoughts? Have we lowered the effects of the steroids with melatonin? What does it mean if he did great on steroids, but we see things creep back as he tapers off? Thanks!
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