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jph

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  1. Like
    jph got a reaction from tjgmbys in My child is 99% recovered- just sharing good news   
    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.
  2. Like
    jph got a reaction from sf_mom in My child is 99% recovered- just sharing good news   
    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
  3. Like
    jph got a reaction from MomWithOCDSon in My child is 99% recovered- just sharing good news   
    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
  4. Like
    jph reacted to msegal7 in good news PANS /PANDAS LYME   
    Hi all,
    I am an addicted reader here on the forum and have posted a few times but mostly dig for information. I have felt a little badly not sharing our successes and the moment I consider posting, the wheels seem to come off the bus. I wanted to post our progress now because my DS 14 is doing so well and I think it might be of help to some of you. I know I read and re read those hopeful success stories during the dark days of PANS.
     
    My DS began treatment 2 years ago and we began to scratch at the layers thinking the sudden onset of tics, ocd, anxiety and sleeplessness was strictly strep related. Wishful thinking.....it has been quite a journey. There are moments it seems there isn't an antibiotic we didn't try. We found Dr. T, then we found another local doctor who is more familiar with Lyme and PANS in general and we were off. It has been a very long road and there have been a lot of ups and down. We tried so many different supplements I could run a vitamin shoppe from my pantry of things that held promise but didn't work or caused a rapid decline. Slowly but surely we began to peel away the onion layers. We used multiple antibiotics and we pulsed tindamax (2 weeks on and 2 weeks off). We tried every anti inflammatory supplement we could find and we really saw improvement. There were flares pretty often and just when I thought we were rounding the corner, he would turn back around and run the other way. It was very up and down.
     
    Sometime, about 3 months ago, I realized that we were missing something. He was at about 85% but I couldn't find a way to get him all the way home. I didn't want to settle for almost back to normal. It didn't feel like antibiotics were going to get us there. I started thinking we were having a serious detox issue and that his gut was causing the problem also. I couldn't figure out what we had missed because it felt we had addressed so many angles.
     
    I read the boards a lot but only squinted through anything on methylation. I was afraid to even consider it....thought my head would explode. Thanks to all of you (LLM) for your brilliant input and critical advice. I had my son on Quercetin, Garlic and anytime I gave him an epsom salt bath he itched for hours. He reacted to B vitamins with increased ticcing. I had to look at methylation. I ordered the 23 and me and sure enough we have some significant mutations that require us to alter the supplements we are giving. The main thing was a CBS mutation. I took him off all things that might cause a problem temporarily while waiting for our Dr. appointment to discuss the results and lo and behold he got to 90%. Then we started slowly adding in herbal remedies following Buhner (thanks Rowingmom.) We did this with the help of an herbalist and we went low and slow. I started to back down some of the western medicine (cefdiner, malarone) and we are now at 95%. I am slowly ramping up the herbal tinctures and watching in amazement as we see the re emergence of our boy.
     
    I wanted to update all of you and give a little hope. There is a way out of all of this and it requires an ability to zig and zag and swear to something only to swear it off the next day. It requires flexibility and diligence and the support of all of the people out there who have been in your shoes and truly understand your pain. I wanted to let you know that we see the light here at the end of the tunnel.....and if it stalls out.....we will do something else.
     
    Hang in there. You are all amazing and your kids are lucky to have you.
     
  5. Like
    jph reacted to T_Anna in Cannaboid OIl-RESULTS!   
    I haven't been here for a while, but wanted to share that yesterday (yes, only yesterday) we made some progress. DS15 who suffers with severe OCD, is homebound, wont bathe in a shower or change clothing voluntarily, wash hair etc. He took 5 doses of CBD Hemp Oil and yesterday and today went to the bathroom without rituals AND took a shower.
     
    For those who don't remember our story, DS fell off the cliff December 2012. Stopped attending school, functioning etc.
     
    Abx, Anti virals, steroids, 8 HD IVIGS, PEX, short trial of CellCept.
     
    He has been coming back in teeny tiny steps, but still didnt shower, leave the house, take less than 15 hours in the bathroom.....
     
    Yesterday he said he's had enough of OCD ruling his life. He has made an effort in the past 24 hours to plan out his recovery.
     
    Our last IVIG was 3/17 and there is a chance that helped. BUT, we really think it's the CBD, since he has never been this relaxed/focused.
     
    We bought it legally through Bluebird-botanicals.com it is CBD Hemp oil, I put 25 drops in a capsule and he gets it 2x a day.
    T.Anna
     
    Just saw I misspelled Oil, well it's just because I wanted to rush and share the news.
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