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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 Rituxan. I just wish there were a safer option even if it takes longer to be effective.
  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 results? I'll be talking to Dr. L. about this next week. She mentioned it as next step when we last spoke in Oct and we are currently doing high-dose SoluMedrol along with his monthly IVIg infusions. Now the more I read about it, the more concerned I become.
  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 fall asleep in his room, so I stopped wasting the gas. Remember, with supplements brand matters as there is no consistency among brands/manufacturers as there are with medications. We use Dr. Amy Yasko's Melatonin Sleep Spray. It was a life-saver. While I'm aware that one is not supposed to use melatonin long-term so as to not mess with the body's natural rhythm, he had NO rhythm so I have had no problem with staying on it for years. Then last year we were introduced to 5HTP by our integrative MD. While he wasn't waking in the night I didn't realize he wasn't sleeping deeply until we started the 5HTP and his sleep quality went way up. I, too, began taking it and it did amazing things for anxiety (that I was really close to speaking with my doctor about) and joint pain (which I was attributing to age) as well as sleep quality and elimination of racing anxious thoughts when trying to fall asleep. I love the stuff. We use Ortho Molecular Products 5HTP. It is worth reading up on it to see if it might be for you.
  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 "indefinite backorder".
  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 autistic when I never thought that and no diagnostician had ever diagnosed him as such (some non-diagnosticians in the therapy and teaching world diagnosed ME as the "worst case of denial they had ever seen" - but he didn't meet the criteria for an autism dx and all the DOCTORS were saying "it isnt' autism but they didn't know what it was", so I wasn't going to label him incorrectly and put him in a world in which he didn't belong and I'm forever thankful I didn't. When Dr. Swedo said the behaviors were characteristic of being encephalitic - it finally fell into place.
  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 I was at my breaking point before the psych meds; after was shear despair I had never experienced. The anger went away rather quickly but it took months for the dystonia to resolve. I was so afraid it had permanently affected him - I could barely live with the knowledge the decision I had made had done this to him. I would just be extremely cautious, especially since you have had her at 99% in the past without psych meds. Psych meds may not be a quick fix and the risk for long-term, even permanent, serious side effects should not be taken lightly. I would definitely work with your doctor to get her back on track to the 99% you had her at without psych meds even if it is not the fastest route.
  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 to do High-Dose IVIg, which she gladly sent recommendation to our local immunologist so we could pursue local options and insurance payment as opposed to travelling to DC for infusion (we are eight hours away). Most recently she sent recommendation for Solu-Medrol pulsed-dosing while we wait the months to see if the three HD IVIgs we did produce the results we want. We are going back to DC in Oct to see her in person, but the Facetimes in the interim through the year are a wonderful way to keep things going.
  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-pocket and out-of-town with thousands out-of-pocket for treatment and travel/lodging when I could have it done locally for a $35 copay (yes, I know how fortunate I am). So there were several months of waiting until I found a local doc to play nice with us, then a few months of 1g/kg, then finally the high dose was approved. I'm thankful for the delay, though, as the first lower dose IVIg was rough on him and we needed to figure some things out for support and for his body to acclimate before the high dose, which we ended up doing three over May thru July. I understand that improvements may not be seen for several weeks after a HD infusion. We are at week 11 after the first one done in May right now, so it hasn't even been 12 weeks since the first. I've made an in-person appointment with Dr. L in Oct which is 12 weeks after the THIRD IVIg was administered in July. Not only does this correspond with that timing, but also the conference which I plan to attend. My thought on the timing, though, is that I didn't want to go any earlier than 12 weeks after the last HD IVIg as I didn't want to get up there just to be told, "you haven't given the HD IVIg enough time to tell us if it is going to be helpful or not. I'm not going to recommend anything until we can say enough time has passed." I do have a Facetime scheduled at the end of this month to talk about anything we can do in the interim between now and the Oct appt. In particular, I want to talk about the prospect of either low dose prednisone or prednisone pulsing. He responded beautifully to the one week of pred last year. LDN and fish oil do nothing but cause issues. He actually has two diagnosed conditions where prednisone is indicated as part of the treatment, but no one will even consider putting him on it! That blows my mind. I completely understand the risks, but I also understand risk vs benefits, and this kid has gone far too long without benefits. So, long story to my question - I'm willing to Facetime and see Dr. L. and our local immunologist or the integrative doc in Atlanta we use as often as I need - but there are sometimes when I feel if we went there would be no value added (there would not have been any point of talking to or seeing Dr. L during those months we were waiting for HD IVIg when I knew that her recommendation for next step was HD IVIg). How often do you see your docs? Monthly? Every three months? It seems like every time I see his local immunologist (our IVIg guy), he wants to see us again in three months. Do that four times and a year has passed and nothing has changed. I need ACTION from these people! I've said it before, but he has been sick his whole life and we didn't get a correct dx until he was 12, so I'm over being patient. I need someone to take HIS INDIVIDUAL SITUATION seriously, realize how long he has been sick and that it is going to take the extra mile to treat him. If that means I have to pay out-of-pocket for monthly Facetime appointments that may or may not yield anything just so that Dr. L can REALLY know him and have him on her mind, I'll do it. Is that what it takes in your experiences?
  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 here. He's never been able to tolerate fish oil well (he just becomes very agitated and hyper) and the doc didn't think that would be the same with this product but it was. So I took him off both things and behaviors returned to normal. I never went back to the LDN but was recently thinking I should. Now I think I will just add it in and not change any other variable and see if it may be helpful. And Nancy - Yes,I am familiar with your son's story and it gives me so much hope! He has been on constant abx since Jan 2013, starting with amox 500 mg 2x day for about a 1.5 years, then switch to omnicef for about a year and most recently Augnmentin XR 2x per day. The higher the dose the better he seems. He cannot be off it for even two days before I'm frantically getting it back into him. I've been a quite dismayed in the inability to pinpoint the exact bacteria it is treating and the indifference I've encountered by the docs in that they don't seem to think knowing the infection source is important. His CamKinaseII was 187 but no strep titers. I don't suspect Lyme, have done the "normal" lyme testing (negative) but not the Igenix. Also looked at myco, EBV - all the "normal" culprits. There is clearly something bacterial going on or he would be dependent on the antibiotics. Prior to beginning prescription antibiotics in 2013 for years he was on natural supplements with antibacterial properties which, again, he could not be off for any length of time. I'm going to go ahead and re-start the ldn. I haven't done consistent motrin (except the few days after an IVIg to ward off headache and fever). I know there are risks to giving NSAIDS all the time, too, but something has GOT to give.
  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 PANDAS-motor planning issue (that's right - my nearly 13 year old cannot talk but understands everything that is said to him. Years of speech therapy were wasted because, the underlying reason for the apraxia, aka PANDAS, wasn't diagnosed! grrrrr). Although I know when I see improvements in areas, I really don't know what my kid is like when he is well, because he never has been. I really haven't seen anything at all in terms of improvement since the May and June HD IVIgs. I know it can take several weeks so I'm trying to be patient. My question is : Is 12 weeks still the "rule of thumb" on when things may begin to turn around? If that is the case, then Aug will be the 12 week mark from the first HD, or Oct if I count 12 weeks from the July HD. We saw improvement immediately with prednisone, which is what gave Dr. L the impression that he may respond well to HD IVIg. Sometimes I feel like he needs to be on pred in addition to other interventions, but I know why that isn't the greatest idea. We've only done one 10 day burst and then it was yanked away and the improvements went away with it. I have a hard time being apologetic about being "impatient" after waiting so long for a correct diagnosis and then post-diagnosis, the months and months of waiting on doctor appointments, begging for particular treatments and then once obtained, insurance approvals, etc, etc. It's like I've been running a nearly 13 year marathon only to arrive at the starting line of a race where the people from whom I need help crawl at a snails pace. If only everyone had the same sense of intense urgency I have. If he had a treatable disease that is "recognized" by the medical world, I doubt seriously anyone would think it acceptable to wait this long for diagnosis and treatment. I pray that will change for PANDAS soon. Sorry for the rant. I don't do that often but sometimes it feels good to put it out there.
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