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KLW

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KLW last won the day on November 2 2016

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  1. COMT+/+ indicates over-methylation CBS+/+ may effect ability to process ammonia and taurine My source: Dr. Amy Yasko book available free as .pdf online here (you can do a word search. It doesn't cover all of the SNPs you listed in your post, but it does cover COMT, CBS, MAO, MTHFR, BHMT, and VDR): http://www.dramyyasko.com/wp-content/files_flutter/1327512160_9_1_1_8_pdf_02_file.pdf It provides description of what the SNPs are, what they effect, and ways you and your doctor can discuss to address them.
  2. Moderate positive response to IVIg. We've done high dose and monthly low dose (still do the monthly). His baseline Ig levels were very low. He is also on 2x/day Augmentin (was doing XR until they stopped making it). He can't function without antibiotics. The best intervention has been the high dose prednisone (via IV as SoluMedrol). That has prompted him to choose to sleep alone for the first time in 13 years (!) But it has done nothing for anxiety, OCD, attention, handwriting or speech (DS has severe apraxia). I do believe his symptoms and duration of illness warrants use of Rituxa
  3. Hello - I'm having to make a decision re: Rituxan infusions within the next couple of months and frankly, I'm scared. For anyone out there that has used it: Did you have any adverse effects? Did you do an overnight hospital stay to ensure no bad reaction within first 24 hours? Has anyone done it outside of Georgetown with success? Did you have to observe a period of time where your child was basically quarantined? (not real quarantine - but did you have to keep them home more than normal - away from stores, swimming pools, vacations, etc.) Are you happy with the result
  4. Hi - I see you listed melatonin, but have you tried 5HTP? In very general terms, it is a precursor to the production of serotonin, which is converted to melatonin when it is time to get sleepy (think tryptophan+B6 > 5HTP > Serotonin > Melatonin) . If 5HTP is low, then serotonin won't be made and there will be no bioavailability for conversion to melatonin. We battled going-to-sleep issues for years before we tried melatonin. He would normally not be able to fall asleep until 2 or 3am. I, too, would drive around for hours until I realized it took him the same amount of hours to
  5. Yes! This is a problem. I've already had to switch pharmacies twice and both times had to call around to find someone who had it in stock. Already have plans to begin calling next week in anticipation of the next refill. I'm so not happy about this and don't know what I'm going to do if I run out of options. My regular pharmacist said a compounding pharmacy may be able to compound the dosage of amox/clavulanate acid, but not the extended release mechanism. Right now I have no answers as to why there is such a shortage. All my pharmacist sees from her wholesale source is that it is on "in
  6. Re: the topic of autism and the autism-like characteristics some of our kids exhibit - Dr. Swedo said something near the end of the conference last month that made so much sense. I don't remember the context of the question (it did have something to do with a dual autism/PANDAS dx) but her answer included that she didn't so much see those similar characteristics in non-autistic PANDAS patients as "autistic-like" as much as she considers them to be "encephalitic". I nearly jumped out of my seat and yelled, "Yes! That's it!" I've struggled for so long with people assuming my child is aut
  7. I know that some have had good experiences with psych meds, but our experience was harmful (gabapentin and Risperdal). I so regret doing it even for the short period he was on it (10 weeks for Risperdal, more like 3 months with the gabapentin). We did this prior to our PANDAS dx - at that point I had been searching for a correct dx for 11 years so I was also at a breaking point and finally broke enough to consider psych meds. It was a nightmare - anger, aggression, raging and the absolute worse - dystonia. Every waking minute with uncontrollable muscle movements and spasms. I only thought
  8. My son was not a text book case, either, but Dr. L diagnosed PANDAS after seeing the results of his Cunningham panel that she ordered. At our first consult with her and before the results she honestly wasn't 100% convinced, but after his high CAMKII and his response to initial prednisone burst she was confident it is PANDAS. I feel she has been straight down the line of treatment options. My son was already on antibiotics for years when we began seeing her as well as subcutaneous Ig infusions (for hypogammaglobulimia), but when that was not producing adequate results she said it was time t
  9. Has anyone had experience with pulsing solumedrol at 5mg/kg? For my DS, that equals 300mg via IV along with his low dose IVIg he receives every two weeks. Ibuprofen does nothing for him. He needs some relief but I've no idea what to expect 300mg at one time will do. We had some gains on an oral pred burst at 60mg per day for a week last year and has only had 10mg solumedrol with his IVIg since then (mainly just to ward off immediate IVIg headaches, etc). This is beginning this week. I want to see great things from it but naturally am a little anxious about it.
  10. Kennedy Center Premier Wednesday, October 19, 2016 at 6pm
  11. I was thinking it was Oct 18 (that Tuesday after). Makes more sense to have it on Oct 16 as those that travel for the conference can still be in the area without having to stay extra nights just waiting on the premier. Dr. L's office is the one that told me. I think I'll follow up on Monday to find out exactly what date. I'll post if no one else has confirmed before then.
  12. Please someone correct me if I'm wrong, but I think the plan is to premier it at the Kennedy Center the week after the October PANDAS conference in DC.
  13. Hi, OK, I know this is an incredibly individual topic, but I would love to know if I'm seeing docs as often as I "should" be. We began seeing Dr. L last May 2015. That was in-person and is an 16 hour round-trip drive. She, of course, accommodates those out-of-state with Facetime appointments, which is awesome. So we had a couple of Facetimes after that and sometime last fall she said it was time to do High Dose IVIg. I chose to seek local support on that given that we have good insurance and my child has documented hypogammaglobulimia, therefore there was no reason to pay mostly out-of-po
  14. Thank you. llm - on the low dose naltrexone, what benefits did you see and how long did it take to see them? I actually have that here and began it back in Feb. I had a couple of things to introduce so I started the LDN and then after about a week added OmegaGenics SPM Active, which I understand to be a newer product which is a concentrated form of the anti-inflammatory properties in fish oil. Our integrative doc wanted to see if it could help with inflammation in lieu of prednisone. After another week or so, with him now on both new things, things started getting a little crazy around
  15. Hi, we were blessed with approved orders for three consecutive HD IVIg events. First was in May and last week we did June. So we'll do July and then drop back to monthly lower dose. My son would be considered early-onset and late diagnosed. I describe him as being sick his entire life and he wasn't diagnosed until he was 12. We don't have a "baseline" that everyone longs to achieve. He has had to grow up in this state of constant fear, anxiety, inattentiveness, dysgraphia, mild OCD, one BAD year (2014) of tics and in his case, lack of verbal expressive speech as verbal apraxia is his
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