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Everything posted by KLW

  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
  16. Both Berberine and Biocidin are geared toward GI microbiome balance, so they shouldn't kill everything. My DS is on Augmentin XR as well so everthing is being wiped out, but the Biocidin and Berberine have definitely helped keep yeast in check and that has been a lifelong problem. He also takes a lot of probiotics everyday. Re: the constipation, magnesium citrate is great for that, too. You may find the dual effect of constipation relief as well as a calming effect.
  17. I just thought of something else re: the chronic sinusitis and ear infections. Have you ever tried using xylitol/saline nose spray? This stuff changed our lives. DS had recurring sinusitis until I learned of using the nose spray. The brand I have used is Xlear. Before the nose spray, if he got a cold or if allergies caused a runny nose, then he WAS going to end up with a sinus infection. After I learned about the nose spray, I use it liberally throughout the cold or allergy runny/stuffy/sneezy nose period and voila - no secondary infection! They xylitol works like cranberry does with pr
  18. Hi, I know of something you could read that may help make more sense of the genetics and may help you sort out which direction you should go with supplementation. I'm an alum of Dr. Amy Yasko's protocol having done that for my son five solid years. I'm positive that helped save him from what could have been a rather miserable life before finally recently learning that PANDAS is the correct diagnosis. One of her books is available free for download at http://www.dramyyasko.com/ then find the little blue link at the bottom of the page that says, "Get the Book". It will download as .pdf immed
  19. Has anyone had any experience with the Rogers location in Nashville? I've read several good things about the Tampa location, but Nashville is a whole lot closer for us if it is comparable quality care. Feel free to PM me. KLW
  20. Regrettably, my son was on Risperdal in summer 2014 for 10 weeks (against my better judgment and before anyone had suggested PANDAS to me). At the 10 week mark he developed dystonia, which at first I mistook for tardive dyskinesia and literally about had a breakdown. Weaning him off didn't result in the behaviors you describe (bless your heart, and his) but it took about another 10 weeks for the myoclonic activity (the dystonia) to subside. I think Nancy is right in that it takes time for things to get back in balance. Also, if he is taking anything else, please make sure you are pos
  21. From PANDAS Physician Network: "Of particular concern, multiple low-dose infusions of IVIG (such as those used to treat some immunodeficiency syndromes) may worsen symptoms of PANDAS through activation of the immune system and should be avoided." and "The dose used in the NIH trials was 2 grams/kg of child’s weight (1 gm/kg per day for 2 days). Based on calculated blood volumes, some have suggested that the dose could be reduced to 1.5gm/kg (750 mg/kg per day x 2 days). However, there is no scientific evidence that either is more beneficial. The maximum dosage of IVIG is 100 gm/da
  22. Hello, Saw our immunologist last week hoping for his cooperation with at least a single HD IVig for DS. He surprised me by wanting to order three months in a row at 2g/kg and then drop down to 1g/kg monthly thereafter (we do have documented hypogammaglobunemia). I began to wonder if it is wise to do three months in a row. Any known reasons why I shouldn't do three months in a row at that dose? - K
  23. Hi, I was successful in finding a local doctor to order IVIg through insurance after having done subQ Ig for nearly a full year. We did 1g/kg as opposed to 2g/kg and honestly I'm thankful the doctor didn't want to start out on the higher dose. I can't imagine what 2g/kg would have done to him. During the 11 hour infusion (higher rate is what triggered side effects) we had chilling/shakes and up to 101 fever but other than that it went smoothly (no anaphylaxis), and after we got home he was eating and in good spirits. It was 24 hours later when it knocked him flat on his back with 103 fever
  24. Yes, Dr. Latimer ordered a pred burst which was actually 60mg per day for 10 days with no taper (I had to confirm that is what she meant to do as I had never heard of no taper, but apparently that is common now). He responded immediately - tics completely disappeared after first dose, his handwriting got better, it was summer and his swim strokes became more coordinated, it was amazing. And then of course regression after we stopped it, darn it. But at least I know it is possible. Omnicef is only addressing bacteria daily dose to dose. Every day I give with breakfast and then I can te
  25. I will definitely keep working toward IVIg. Earlier today I sent the ped a note. Turns out he cannot order the IVIg directly and he is trying his darndest to find a specialist. The first immunologist balked and punted to neurology. The verdict is still out on neurologist - he's fickle and voiced his concerns but also understood the potential for need of IVIg. So the verdict is still out on him. The note I sent said in the short-term it might be helpful to try another antibiotic and that may help the specialists get a better warm-fuzzy about IVIg if we see no benefits since they both have
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