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jph

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Everything posted by jph

  1. The behaviors are mild OCD that don't affect his or the family's quality of life. They present like tics but they're more compulsion-driven. But the world doesn't have to stop for him to complete them (it did for my older son). We are patients of a PANS/Lyme dr. and he's run the gamut of tests. IGM results are IND on bands 31 and 41. IGG results are IND on 39, +++ on 41, and + on 58.
  2. My older son had severe PANS from ages 5-9. I've lived through that ###### with certainty. Never knew his triggers despite all the tests. Found homeopathy after three years and he recovered completely with it. He's 11 now. My younger son's behaviors started raising flags with me at age 4. He's 5.5 now. It was a quick, but not overnight onset. Thanks to his brother's history, I had an idea what was going on. Started with the homeopath right away- still doing it with no luck. On my younger son's worst days, he is a million times better than my older son was on his best days. My younger son seems to lack the psychiatric component (thank God!). We've done all the tests and have no trigger. Could it be that both boys have Lyme but only my older son had PANS? Or could it be that both boys have PANS but only my older son has Lyme? Both boys have positive bands on Igenex but are labeled negative for Lyme.
  3. DS10 had severe PANS for many years. No testing ever turned up a trigger. We are finally doing Igenex this week. DS4's sx just started within the last 9 months, and are mild. We've done no bloodwork yet. The first I'm doing is Igenex. Are there other tests I shouldn't miss while the needle is in his arm anyway? I have the list we did through Dr. T for DS10 but it seems excessive considering nothing was found. I'm guessing DS4 would be the same. He's a very healthy kid. And with two kids in the same family with it, it almost has to be something genetic or like congenital Lyme, right? I'm doing the Igenex test also. WWYD?
  4. We consult with Grant Bentley, hp at www.vcch.org. There is a fb group called Homeopathy Cafe where moms talk about what they're doing to heal their pans kids homeopathically. Each person's constitution is different, so although Causticum is the miracle remedy for my child, it absolutely does not mean Causticum treats pans. It only treats my child. To find your child's remedy, you must consult with a trained homeopath who can look at their whole case. We have always homeschooled, even prior to pans.
  5. I spent a lot of time on this forum reading when my son was in the throes of PANS. I didn't read many stories where children had recovered from this horrid illness. This post is for someone like me who needed to be handed a life raft and took a leap of faith to get on it. A year ago my child had had PANS for over three years and had been diagnosed for only about six weeks. He was the worst he'd ever been in all the years of having it, having every symptom under the sun at the highest intensity possible, despite being a patient of a PANS specialist. A mom on another forum I'm on suggested homeopathy. At first I thought, yeah, right. My child is ill. If he's not getting better under the care of a specialist, homeopathy isn't going to do anything. The universe opened up to make sure I was hearing her: I could not get a hold of the specialist despite calling and emailing for several weeks. My son was sicker than he'd ever been and sicker than anyone I was reading about. This person gently nudged me a few times toward homeopathy. Two of her pandas had been healed by it. Despite my mindset about how sick he was and that he was seeing the best possible doctor for his condition, the stuck position I was in led me to take the leap of faith into homeopathy. I started seeing results within days- not miraculous, "he's better overnight!" results, but for the first time in 3+ years, something was making a difference. The first few months were a little bumpy, but he continued to get better. Even during the bumps, he never, ever got as bad as he'd been when we started. It's now been 11 months since we started. Since July, he has held steady at 98% normal, meaning 98% of who he was before PANS. For a few weeks now, he's been 99% normal. This post is for anyone who needs it. <3
  6. Please consider supporting the PANDAS/PANS awareness t-shirt sale going on right now. $15/shirt. They're bright green and sure to attract attention, hence awareness! I love the slogan- Not rare, just rarely diagnosed! The deadline to order is 9/18/14 I believe. Thank you! https://www.booster.com/ug-14104701769311635?share=711410831894844
  7. Thank you for sharing. We've traveled all over but your list and suggestion gives me something to go by.
  8. If you've had Igenex Lyme testing done, would you please share which tests you had done or recommend having done? I don't want to go through yet another dr, and my sister, who is a dr, is willing to order the test for me if I provide her with a filled out form from Igenex. (but knows nothing about interpreting the results, which is fine). Thanks!
  9. Thank you for your feedback. I'm still wondering if kids that still "have" PANS/PANDAS... kids that are not in remission... are the symptoms chronic? I know there are ups and downs and flares, but... my kid has had this for almost 4 years and although he's doing incredibly well on homeopathy, and I expect him to make a full recovery and get to pre-pans eventually, in four years there were only two one-week episodes early on where he was symptom-free. So, I'm wondering if that's the norm.
  10. My son is taking 5000 mg/day. More than that and he gets diarrhea. I started high doses of omega 3s with him about two weeks after he started his correct homeopathic constitutional remedy and saw results very, very quickly. Days. Five days after his constitutional was started, he came out of a flare and over the next week we began with a little and began upping the dose of omega 3s. He's never been better since. There's just a lingering of issues, hence the original question.
  11. I'm really on the fence about our next step. Homeopathy and mega doses of omega 3s have given my PANS son and the whole family our lives back in the matter of a few months, but there are still some lingering issues. I was following the path of amino acids, and working with a dr. who customizes them based on blood test results. But shortly after consulting with him, genetic testing came back via 23andme and shows methylation issues. I presented the idea to the dr., who just said that he can't use the genetic information to customize amino acids (I was hoping to avoid more blood draws). So now I'm at a point to decide: Which is more important? Methylation issues or amino acids? Any thoughts?
  12. Does anyone know where to interpret raw data? I received my son's 23andme results today. He has no mthfr mutations, and the place I found to interpret results is in conjunction with a mthrf mutation. Just checking. Thanks!
  13. Amish healer Solomon Wickey (recently passed away) has a cancer protocol you can find by googling his name and "cancer".
  14. I'm looking for doctor and test recommendations for my PANS son. Quest test showed negative for Lyme but I don't necessarily believe that. Im in Chicagoland but location doesn't necessarily matter. Thanks!
  15. I had a phone consult with a PANS dr. in Dec. The plan was to do 30 days of abx. If that didn't work (it didn't), then he thought that would rule out any bacterial sources, and we'd try a steroid burst. Dec. 31 was the last day of abx. I called the dr. and the receptionist took a message. This happened four times in the next two weeks. Then, I just gave up. But I'm ready to start fighting again. Are all doctors so hard to reach? Partially venting, partially really curious. As if PANS isn't bad enough, is this playing hard to reach game with doctors all part of the cruelty?
  16. llm, thank you. Those suggestions are exactly what I was looking for.
  17. My 9 yo son's had PANS for 3+ years but only dx about 2 months ago and 30 days of abx haven't touched a thing, just to provide some background. He's had a contamination tic for about 14 months where anything that's been touched by a girl is contaminated, and paradoxically, he has the compulsion to touch (ie poke/hit) his 6 yo sister *every* time he goes by her. This HAS to change. It's affecting my daughter on so many levels and for so long, we let it go as "it's a tic and he can't help it". She's very wise, an old soul, but even the most patient person can only be patient for so long before it blows. It's blowing. My son is on board and understands (as well as he can) how *he* would feel, if every time I saw him, I hit him. He is open to suggestions on how to change this. I told him I'd come here to ask, while he and I also try to come up with something. Thanks.
  18. My son was had PANS for just over three years before we got a PANS dx late this year. Finally, he is on abx (day 23) with Dr. T being our dr. I would think I'd see changes by now, but I can't say that I am seeing anything positive or definitely related to the abx. Nothing is glaringly better. Things have changed (ocd diminished, more frequent and new tics, sensory issues less severe), but they could very well be attributed to the cycling monster that it's been for three years. I'm really curious what healing has looked like for you. Should it be taking this long?
  19. Hugs. My 9 yo son also had contamination ocd- today's day 14 of a double does of abx and today's actually the best day we've had in a long, long time, so I will speak in past tense as I hope this is in the past- he was unable to touch or be touched by anything that has been touched by a girl. I have a daughter, so basically everything in our house was contaminated, including his bed/sheets/pillows etc bc they touched the floor, which of course, my daughter has walked on. You said his mood is calmer, even while his ocd isn't. It's a great time to set and enforce absolute rules. With my son, bedtimes were taking hours, bc of his contamination tic. He just couldn't lie down. I HAD to do something. So I took media away, which he adores. No ipad, no minecraft, no computer, nothing. It was (for him AND me), but I knew it was the only thing that I could hold over his head. It still took him a loooong time to find a way (this is nights into it, not right away; I've never found that magic "change now!" cure!!) but eventually we found a way (albeit a wierd one, taking a mattress of his bunkbed, turning it upside down before touching the floor with it, putting it on the floor with only a sheet on it [one that he chose which was the least difficult for him to use], and using NO covers- though as time progressed I was able to give a little media, then use it as a tool to get him to choose something to put over him when he sleeps; all the blankets in the house were contaminated but he was able to find two sheets to pull over him, as long as they never touch the ground and nothing touches them). He was at his worst in a long time when this started, and now two or three weeks into it, we've developed habits that help him get to bed (he had to "practice" going to bed each night and making it work before getting media before bedtime) and help him deal with his ocd. Point is, take advantage of his calmer mood to enforce the fact that he is required to takes these medicines, and if/when he cycles into a poorer mood again, hopefully some habits will be in place to help him cope.
  20. BTW, we hired a nutritionist this summer to work with my PANS son; he was Dr. Mercola's chief nutritionist for seven years. I spoke with him the other day and he told me about this website, where you may be able to get a lot of your blookwork done more cheaply. Might be worth looking into. www.LEF.org/bloodtest
  21. Thank you! I just set an appt with a DAN dr who also treats PANS kids and I am left feeling very hopeful about our appt bc they do a very comprehensive blood work up and their treatments are allopathic and holistic. I'll bring your list with me when I go to be sure these are included!
  22. I want a comprehensive blood test done. I want to test for everything. I want to find what it is affecting my son, so it can be treated. Does anyone here have a comprehensive list of what blood tests should be ordered when searching for answers? We recently had an immune workup done- but I want to find out what infection it is. Can you help?
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