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Everything posted by airial95

  1. I have heard from our immunologist that BCBS isn't the only insurance company pushing for this, others have too across the board. They are trying to fight it as best they can, but it's an uphill battle. And absolutely ridiculous.
  2. My daughter takes Cefdinir (generic omnicef) because she has a penicillin allergy - she does okay on it.
  3. The surgery can release bacteria directly into the bloodstream, especially if the tonsils are harboring infection. Many PANDAS docs insist on strong abx prior to, IV abx during, and continuing a strong course of abx for sometime after to combat any bacteria released. If you have access to stronger abx, I would definitely get back on them.
  4. My daughter for the first 2 years was very mild, didn't need long term prophylactic abx, and whenever she got strep we always did a 30 day course of abx minimum. We always did 20 days minimum when she would get strep prior to her PANDAS onset b/c her brother had PANDAS, and our ped didn't want to take any chances (it's the reason I think she stayed mild for so long...until a particularly nasty strain last year.)
  5. My daughter always gets the red, flushed cheeks when she has strep. Sometimes it's her only physical symptom but typcially means a + throat culture.
  6. I wholeheartedly believe they will outgrow it, like Swedo said. But the question is - what are the lasting effects? I had strep triggered PANDAS as a child growing up in the 70's 80's, complete with the well documented chronic strep history and all. Dr. Murphy and Bouboulis both confirmed that I had it as a child. (No Lyme - negative Igenix, like my son). While I outgrew the improper immune response (I no longer have any sort of neurological/psych issues related to any illness), I do have clinical OCD as an adult. I firmly believe that the OCD is a direct result of the untreated PANDAS gr
  7. Thanks, I wrote the first one just for me and shared it with a few close friends. They were the ones that encouraged me to share it, and I've been doing it ever since. Every year presents a different set of challenges, and I think we forget sometimes that everyone is at a different stage in this journey, but ultimately, we are all experiencing similar struggles and emotions. I have always found that it helps me to look back and see how far we have come!
  8. Year 4 – a look back Every year I have posted a list of reflections, things I have learned through the previous year’s fight and struggles. I have found that each year it has helped me to be able to reflect on how far we have come, as well as to revisit the previous year’s reflections to keep perspective on where we have been. I have found it helpful to even look back at each year's post to see just how far we've come - Our First year: http://latitudes.org/forums/index.php?showtopic=12108&hl= Second: http://latitudes.org/forums/index.php?showtopic=16245&hl= Third:
  9. On the Omega 3 - be careful what supplements you give, check to see if they also have Omega 6 (many do). Omega 6 can actually CAUSE inflammation, which can be a problem in our kids which could be the reason for increased tics.
  10. That comment was from a post on one of the many Facbook groups. It spurred a lot of discussion. Had my pediatrician not correlated my son's massive regression and personality change to an impetigo infection, or had we been at a large practice where you see who ever is in that day - he would've absolutely been dx autistic. He wasn't, however, because our ped suspected PANDAS first and foremost (although he prepared us for potential aspberger's dx down the road if PANDAS didn't fit). With PANDAS treatments, you would never think that my son was anything other than perfectly normal.
  11. Most experts also subscribe to both theories - that's why I didn't want to say they were "competing" exactly. The fact that there is a strong documented genetic connection only can explain about half of it. It can't explain the clusters that they find from time to time.
  12. sss - there are two distinct theories on PANDAS/PANS - one is obviously genetic. Dr. M has published research noting as high as a 60% incidence in siblings where there is family history of chronic strep or autoimmune disease (we fall into that category). But there is also another school of thought that indicates it may be a particular strain of strep/infection that causes the dysfunction - which explains why you see outbursts like what was seen in Leroy not too long ago, as well as similar outburst in CT and the Carolinas in recent history (all of those were attributed to "mass hysteria" - b
  13. Keep a daily journal for all of your kids documenting behavior, tics, and anything they may have caught or been exposed to. It will be invaluable in the long run. My daughter started out with very mild symptoms - basically increased moodiness - she would cry if you looked at her wrong. It would be around for a week or so, and go away on its own. It always coincided with a bad flare for her brother, so initially we thought it was attention seeking behavior (Her brother was 26 months at dx, she was only 3 1/2 at that time - so that was a real possibility). Eventually, we realized that when
  14. I do think that I was "lucky" in the respect that I at least did get sore throats and fevers with my strep, so my mom always got me in to the doctor and I never really had an untreated strep infection. But Dr. K is right, it was well over 20 years ago that I had these issues, and no one put two and two together. I also think it was a different time parenting wise as well. (My mother from Spain was told not to speak to us in Spanish as children because we would turn out "slow" - a lot has changed!!!). I should note, that it took almost 2 years into our journey before we even put 2 and 2
  15. In know it's not always an option, but a local pediatrician who is at least open to PANDAS and learning about it can be your best resource. We have consulted with multiple PANDAS docs, however, it's our pediatrician that we go to when we need something quick. Because he is privy to everything that happens between us and the specialists , a situation like yours where you were already given a next step but just need a script - he would step in for us. Both of our specialists (Drs. M and have both been thrilled with how proactive our ped has been. He was far more conservative at first, bu
  16. Yes, his initial symptoms at presentation (19 months old at onset 26 months old at dx) were OCD, ODD and ADHD. At the time, the NIH didn't acknowledge that kids that young could get PANDAS (age of onset was believed to be between 4-8, they have since removed that criteria), but my son's onset was staggering - overnight, immediately following and impetigo infection. (He went from being verbally advanced to practically non verbal in the 6 months between onset and dx). The other thing that was unclear at the time is whether ADHD was associated with PANDAS or not - this was 4 years ago, so the
  17. I absolutely had it as a child. Chronic strep (6-8x per year) - I would get sick with it though. Was hospitalized in Jr. High because I had strep for over 2 months and nothing was clearing it - had to go on IV abx (it was there that a random nurse asked my mother if my sister ever got checked - sure enough, she was a carrier!!!). I had what chronic UTI's (or at least that's what the dr thought at the time), and would have to go to the bathroom constantly. Again, in Jr. High I was put through a horrible battery of kidney and bladder tests trying to find out why I was getting so many UTI's
  18. My son takes a low dose of Vyvanse, which is also a stimulant. We opted to add it when his impulsivity got to be flat out dangerous (still running into the street, taking off in parking lots, etc...even at 5 when he knows better). The first dose we gave him was a disaster - it ramped him up so badly you would have sworn he was freebasing pixie sticks. He did not stop talking for several hours. However, after that first dose, he has done very well on it. We have been on it for just over a year and it has helped the ADHD a lot. His OCD and tics are managed by the abx and IVIG, but the
  19. We had no flare post T&A, it was wonderful. It was the first time we had seen our son at 100% since his onset 2 years prior. About 6 weeks post op, we saw the ADHD creep back up (which we chalked up to him being 4 and the excitement of the Christmas holidays combined with being cooped up in Grandma's small house in the cold weather). But unfortunately, it was the first signs of a flare, which ended up being caused by a new strep infection. It is still possible for them to get strep post T&A, so I wouldn't discount the possibility that this in not a post-op flare but could be a
  20. Having the results will also help the staff at the new school understand and relate to how he learns best. I would want the results.
  21. mommy2mcl - I'm confused by your statement " I would think that as you build immunity the flares should not be as bad." It is not the strep itself that causes problems, but the immune systems response that is the issue, so that statement confuses me. The basic function in PANDAS is that the body mistakes the brain as being strep - building an immunity to strep requires exposure - which triggers the attack on the basal ganglia, causing the flares. Flares can last long after the infection itself is gone because the bacteria itself is not the issue. There are some kids who have reported s
  22. pr40 - for us, we see a rise in rigidity when a flare is starting, refusal to eat foods, get dressed, brush teeth, difficulty switching from task to task. In isolation, a lot of this can be written off to a typical 5 year old having a bad day - but they are very early signs for us that he may have been exposed to something or coming down with something. That's not to say that we have not been hit with the total blindside exorcist tantrum rage straight out of the box with absolutely no warning from time to time too...
  23. We kept an extensive log of symptoms/behaviors/triggers when my son was first diagnosed, and it helped us create a very specific plan tailored to him when he starts to flare. If you're new to the diagnosis, and haven't considered keeping a daily log - I highly suggest it. We were able to see distinct patterns and differences in how flares begin for a new infection vs. exposure For example, wetting the bed = positive strep culture and full flare EVERY TIME. We no longer even wait for other symptoms to develop. Wetting the bed is the first thing we see with a new infection. Our logs were so
  24. I posted a link to it on my personal FB page - I grew up in Buffalo and have lots of friends and family still there- many of them would benefit from this presentation!!!
  25. My son had his onset in May 2009, diagnosis in January 2010, but did not receive his first IVIG until April 2013. We opted to treat with abx first, and have his tonsils and adenoids removed as well. We finally decided to pursue IVIG when abx would only recover him to about 85%. His first infusion was a 100% success. Immediately. We didn't see any regression at all. It was amazing. He has continued to do well with infusions every 8 weeks or so. He got his first strep infection in December - first in over 10 months - a new record for him. So we have seen success with IVIG even t
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