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  1. Hi everyone, My 9 year old DS has been treated for the past 2+ years at Stanford Children's Hospital for CVID and PANS, and by another local MD for congenital tick-borne infections (ehrlichia, babesia, and borrelia - aka Lyme). After monthly rounds of IVIG 'maintenance' doses for the past 2+ years to treat CVID and 5+ years of antibiotics to treat the tick infections, he's improved overall but had new symptoms appear that led me to ask Dr Theinemman at Stanford to consider plasmapheresis for my son during our appointment today. Those symptoms include: - self injurious behavior and aggression towards me (jumping on me and pulling me by my hair when upset/raging) - severe OCD to the point of being life threatening (obsession with public restrooms and flushing toilets - he'll race across busy streets if he sees a Starbucks where he knows there's an easily accessible bathroom, run into strangers' houses to get into their bathrooms, etc.) - severely restricted eating (no protein since sometime in late 2015) Dr Theinneman is 'on the fence' about plasmapheresis for him due to some of his underlying infections potentially still being active and causing inflammation. She is going to discuss with Dr. Frankovich and call me in a couple of days with a decision. My questions for you are this: - if your child has undergone plasmapheresis, did s/he have an active/underlying infection at the time? Did s/he also have CVID? - what was your child's response to the pheresis? If s/he improved, how long did it take to notice improvement? - if your child got worse, what symptoms got worse, and did s/he return to baseline after a period of time? - if your child got worse after the pheresis, did you pursue any other treatment options? What were they? What was the outcome? Lastly, a huge thank you for all of the prior postings on this topic! They have been very helpful :-) And, thanks in advance to those who will (hopefully) respond to this post of mine; my appreciation of the dedicated, exhausted parents and concern for their precious children cannot be adequately expressed in a post
  2. Hi Deborah, I'm hoping that you were able to get some definitive answers, or at least good guidance from the PANS clinic yesterday! How did it go? What did they recommend for your child? We just got our referral to see Dr F, so I'm really curious to what she recommended and what her attitude is towards patients with Lyme (my son has congenital Lyme and has been on antibiotics since it was discovered at age 2). Thanks! Vanessa
  3. My son's DAN doctor determined that Namenda should be tried based upon my child's lab results (and my agreeing to give it a try). We used a low dose for the entire duration of the year or so he was on it (1.25mg/day). It helped my son 'come into our world' more and be more present. His teachers noticed and commented to me that he "has had an emergence". We stopped it after a year because that's when other medical issues started cropping up, and I was also worried about the long-term use of a new drug used "off label" in a 4 year old for so long. I'd consider putting him back on it at some point, as it definitely seemed to help him.
  4. Ok, this explains why my 6 year old has been constipated since his first IVIG 10 days ago. I thought it was because of a slight change in the composition of what he wanted to eat, but it wasn't substantial enough to make him so constipated. Do magnesium supplements help? Anything else that you've tried? I've used slippery elm, extra Vit C, digestive enzymes, and of course, lots of water post-IVIG. He's miserable, though :-(.
  5. Thank you for sharing your DD's experiences; that helps immensely! My son had his CVID diagnosed right around his 2nd birthday, as he was constantly ill and had just received his Autism diagnosis. His first IVIG was a few weeks after that, and the effects were immediate and profound - in a positive way. However, it was short lived. We didn't know yet about the Lyme infections. He was subsequently diagnosed with Lyme and Ehrlichia (positive Western Blot for Borrelia and Ehrlichia) at 2 1/2 years old. He has been on combination antibiotics ever since, except for a 4 month break when we attempted to take him off abx when we thought he was stable - huge mistake! He regressed physically to the point of rubbing his joints raw because they hurt so much, and he stopped being able to talk and couldn't stand on his left leg. Treating the Lyme and confections has enabled huge breakthroughs for him. He has had 2 strep infections over the past 2 or so years, but I think it's the Lyme that has triggered the majority of the issues driving the immune deficiencies and other problems. Protocol-wise, we are doing combo antibiotics, an herbal detox protocol, gfcfsf and no processed food diet (I cook all of his foods and do green juicing), probiotics, adrenal support, standard vitamin supplements. From what you said, it seems like low-dose IVIG is the best option for kids in this situation. Makes sense regarding not overstimulating the immune system, particularly when it's already malfunctioning. Another question for you - you mention that your DS has high functioning Aspergers. Does he have any medical issues that you're aware of, and if so, what are they? I have a son 2 years older than my youngest, and his medical issues are similar to my youngest, but much less severe. Always curious to hear others' experiences - I think mine got Lyme in utero from me as I've been in treatment for it since we all got diagnosed at the same time.
  6. Hi there, My 6 year old has recently seen a pedi immunologist, who diagnosed him with PANS (and wrote that on his exam follow up appt sheet). My son has had Common Variable Immune Deficiency (CVID) since he was 2 yrs old, and has had 13 rounds of lower dose IVIG in the past to bring his antibody levels into normal range. Unfortunately, they're back down to abnormally low ranges again, but given the new PANS diagnosis, I'm wondering what the best course of treatment dose of IVIG would be for him this time. Are any of you in this situation with your kids, or have been in the past? Did insurance only cover 'low dose' for the immune deficiency, but not a 'high dose' IVIG for the PANS diagnosis? What did the doctor recommend? What dose/frequency did you go with? Most important, how did you child respond to this treatment? We have our follow up appt in 2 weeks to discuss next steps with the pedi immunologist. Any info you can share would help me so much!! Thanks! Vanessa
  7. For those of you who have live (or non-artificial Christmas trees) in your house, WATCH OUT FOR TICKS! On our baseboard and near the ceiling next to our Christmas tree, I saw what I thought were weird looking baby spiders this morning, so I killed them both. Then, just now, my husband spotted a large adult tick on the baseboard crawling slowly away from the tree! My theory is, as the tree is 4 weeks old now and drying out, the ticks are leaving the tree and looking for a more lush, greener tree to reside in. Scary! We are taking this tree down now and telling our kids that we just can't have it in the house. They're still get their presents, and that's all they care about at this point anyway ;-) I've stayed away from artificial trees because of the lead content, but I think I'd rather deal with that than ticks!
  8. You mention that joint compressions are what gives him relief. This is what I use with my sons to calm their sensory issues (they both need a lot of sensory regulation as sensory processing issues are a big part of their autism and it was much worse when the Lyme was not yet treated). I also put couch pillows over their legs and press down to point of comfort and this helps calm them. There's a great book called "The Out of Synch Child" that goes into great detail about Sensory Processing Disorder and gives lots of practical advice for sensory activities you can do at home to help.
  9. In 2001 I had constant numbness and tingling in my right hand and right foot, and when my husband found out he made me go to my primary care doc to get it checked out. He had me do a brain MRI with contrast dye, which showed no demylination (read: no definitive signs of MS). So, my doctor said I was fine and told me to stop drinking coffee. Fast forward to 2009, when my son's pediatric specialist advised me to get tested for Lyme and co-infections, as she sees a lot of mothers of children with autism and Lyme also have Lyme (as their kids get it in utero). Turns out I was positive for Lyme and Ehrlichia. If only I'd known years before --- life would have been very different for me and my sons. My advice: - find and LLMD (the ILADS website is a good resource for getting you started for this) - get your son tested for Lyme (borrelia) and co-infection panel through Igenex - you may trust your doctor and he may be right, but then again, doctors are not perfect and medicine is full of unknowns. Hang in there! You're not alone in this.
  10. Definitely add Borrelia to the list, as this is the bacteria that causes Lyme disease. The others that you mention (ehrlichia, bartonella, babesia) are confections often accompanied by borrelia. Note: ask WHICH test the NIH will use for these tests (i.e. Western Blot, ELISA for Borrelia) as this will tell you how accurate the results may - or may not - be. Testing for Lyme and its confections doesn't always yield a definitive "yes' or 'no' answer, as it is highly dependent upon variables such as: status of the patients' immune response at time of testing, type of test used, strains of organism tested for, etc. Good luck!
  11. We have an Aquasana filter, which works well. It was easy to install, and relatively inexpensive. We used to have a reverse osmosis system, which is the gold standard for filtration, BUT it wastes a lot of water AND our system had a leak under the sink where it was installed which caused a mold problem :-(. Good luck!
  12. Hi everyone, We need to make our enrollment decision for 2014 and am wondering if we should stick with our current small business PPO plan (United Healthcare, which just raised our premium another 13%), or switch to BCBS or Aetna? We are a family of 4 and ALL of us are chronic Lyme patients on antibiotics. My youngest son also has CVID and has intermittent rounds of IVIG. Therefore, I'm nervous about potentially switching without knowing what we're getting into. My question for you: - what is your experience with getting antibiotics covered for a LYME diagnosis under either Aetna or BCBS? - what insurance companies would you stay away away from? Any insurance feedback would be really helpful!
  13. Thanks, this is awesone and ressuring to see this list! I have an appt. (and finished the gauntlet of paperwork) to see Dr. Chandra at Whole Family Wellness Dec 5 as my son has ASD and Lyme, and I think that his PITANDS is caused by gestationally acquired Lyme and coinfections. We also have our LLMD in the same office as Dr Patel, so perhaps I'll ask about a consult with him as well?
  14. Does anyone have any recommendations for doctors treating PANS/PITANDS in the San Francisco Bay Area? I've looked through the archives already and found a bunch of doctors in the East Coast and midwest, South, and one doctor in So.Cal, but no one in the Bay Area. Any recommendations would be greatly appreciated, as we're just starting down this road and desperately need to get our son seen and treated! Many thanks, Vanessa
  15. Hi there, Re: your question about why I flash boil the herbs before giving them to my son, it is because of the grape alcohol that they contain. I do a flash boil to get the alcohol out, which not only removes the alcohol, but also makes the herbal mix MUCH more palatable to my kids! They drink it without any problem. I would definitely flash boil it if you have any GI issues, as the alcohol could exacerbate it even in small amounts. Sorry I feel like a dummy but could you tell exactly me how you boil the tinctures? Do you pour it all in a pan, boil for a few seconds, and then pour back in the bottle? I use a few of these (samento, low alcohol milk thistle, burbur sometimes) and would love to get the alcohol out. My doctor mentioned boiling but I just wasn't sure exactly the best way to do it. all at once? in a pan? a bit at a time? thanks in advance I put a small amount of water in a small pot, and bring it to a boil. Then, I squeeze the 30 dropperfuls of tincture into the mixture (hence, the 'flash boiling' part). The alcohol is immediately boiled out, and then I let the mixture cool for approx. 1 hour. Once it's cooled down, I put it into a cup of pommegranate juice and give it to each of my sons to drink. They don't even kow it's in there :-)
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