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Everything posted by GatsMom

  1. Gayle, Just make sure you do not give the charcoal too close to the abxs as it may bind them up and render them useless. I think you need to keep it four hours away on either end. I do give it from time to time to my son, but it's hard to find a time to give it when it's away from everything else the poor child has to take! Usually I give it to him at noon (since he takes the abxs with breakfast and dinner) and just move the lunch supps to late afternoon. Between that and trying to give the probiotics away from the antibiotics, it's hard to find enough time in the day... There was an article of biofilm that covered what the best way to time this would be... Also, a simple thing to try is to keep the vaporizer on It really helps around here when the weather is cold and the heat is running non-stop. Mati's Mom and Vickie, Thanks very much! I've had the vaporizer on in his room for the past couple days. I am very cautious with use of charcoal though I've always been told 2 hours away from all meds/supps. Dr. Usman's biofilm protocol actually says 1 hour (but I always do at least 2). I agree, the kids takes so much that it's hard to space it all out and in this case, really hard when he sleeps as much as he does during an exacerbation. I didn't know about giving probiotics away from antibiotics but will certainly do that from this point out. Last night I finally gave him Loratidine 10mg which is what he takes as needed for allergies (cat and ragweed). That really helped! His mood lightened within 30 mins and I have to wonder if Loratidine doesn't have an anti-inflammatory quality about it as well as antihistimine. Saline spray has been in the house all along, if this happens again, I'm going to push him toward that. He's so tired of taking pills and not feeling back to normal. I appreciate, so much, your input! Gayle
  2. A local herbalist who has been watching the journey of my son has been pushing me toward GF stating that if there is permeability in the BBB, it will be made far worse if there is a gluten sensitivity. Gat's mom.
  3. This may just be the physical conern du jour for my ds16 but for the second day in a row he's complaining of a "weird" feeling behind his nose and encompassing his throat. No pain, not a tickle. Says it feels dry, "like someone threw baby powder down there". Interestingly, stomach pain (normally a daily complaint) has not been present. The sinus/throat stuff is making him nervous and spinning up his anx/separation anx. We're on day 4 of azith 500mg (our first time ever on properly prescribed doses) and are seeing some really nice gains. Is it completely unrealistic to think this might be a herx reaction as his immune system steps in to finally get a strep under control that Azith is slowing the progression of? In support of the last sentence, his main anxiety triggers have been less active since starting abx, it seems odd that he'd develop a new one at this point. We're hours away from nighttime supps so I'm giving dose of activated charcoal in case there's a die off mess to mop up but I'm interested if anyone else has seen anything similar. Many thanks to all, Gayle
  4. I was just thinking the same thing while reading the thread, could it be a herx reaction? Treating candida with antifungals, as well as abx for Lyme, can cause that "healing regression" or herx.
  5. Hi Ellie, Thank you so much for the steroid dosing! Such a help to me. My ds16 is 150lbs but sadly, losing weight again during this exacerbation. Do you use abx as well? How does she respond to abx as compared to abx with steroids? We are on day 4 of zith 500mg for the first time in 6 years of PANDAS and seeing some very nice changes! Did she ever struggle with separation anxiety? That is still one of the primary issues of my son, despite his age, when exacerbated. I'm sorry for so many questions, but to talk to another PANDAS mom of a teen is such a blessing to me. I'd be so appreciative of any personal advice or resources designed for teens wrt PANDAS. Many thanks! Gayle
  6. Melanie and Ellie, May I ask the dose of steroids you're using so successfully for your kids. I have an appt with a new doc (here we go again) on 2/3 and I'm trying to have all available ducks in a row prior. Printing off Dr. T's latest post was a huge help. Many thanks, Gayle
  7. All so interesting, again while I wouldn't wish it on another soul, it brings me so much peace to know it's not just us. I watched him closely tonight, the lighter his mood became the better his stomach was and further, the better his color became. Our DAN! doc is all about gut health and we have several practices in place to ensure this but when (and only when) he is in a PANDAS backslide, that child has the worst acid reflux I could imagine. This is complete with waking occasionally with a coated brown tongue and the worst breath possible. We have great success using activated charcoal with the reflux is really bad in combination with omeprazole 20mg. The charcoal soaks up anything its near, including meds/supps to always give it 2 hours away from everything. Those on the DAN! protocol use it to soak up the die off effects of using antifungals, antivirals, chelators and abx. Our DAN! was convinced (and I agree) that Gat had a horrid yeast overgrowth as well as strep. Treating with the above mentioned supp/med helped. I also elevated the head of his mattress by just an inch or so. All tools in our reflux toolbox. There is a link, no doubt. He has a cast iron stomach and eats like a horse when he's not in a backslide. Could I please have Dr. K's web addy? We are now on Bradstreet's waiting list but just made an appt with a (another) local allergy/immunology doc for early Feb. Does anyone know where I might find any of the experts protocols or guidelines so I have something to use as a reference beyond my own personal experience? Many thanks to all! Gat's mom.
  8. Gat's mom, Stomach pain can be a symptom of strep. My son had stomach aches, lose of apetite, fatigue, just feeling awful altogether. Once we got him on antibiotics, things improved, but it wasn't in a couple of days, it took a while. His strep was in his gut. Is your son on probiotics at the moment? If not, that's definitely something you will need to add. Also, some kids develop food sensitivities as a result of strep. My son never had issues before but now is testing allergic to dairy. So you might want to look into that. Or, is there any chance he has an ulcer? Not our case but I've heard of that. So basically, it could be related or not, but I would definitely look or a physical reason for the aches rather than just attribute it to the anxiety. Isabel Isabel, He is on a high test probiotic without strep strains, Klaire's Therabiotic Detox Support. I'm not having much luck getting kefir into him at present but I may have to put the hammer down on a couple ounces per day. Emotional lability has already improved after three doses. He has horrible reflux issues particularly when he's stressed. I give activated charcoal for that hours away from any other supps/meds. He's also back to taking omeprazole 20mg at night, which typically helps some. Here's the thing that keeps me coming back to stress hormones. When he has stomach pain, if he gets distracted the pain nearly immediately goes away and his mood rises again. Thanks so much for your feedback! Gayle
  9. Each PANDAS flare brings about many times per day stomach aches for ds16. It's always been hard for me to distinguish whether the anxiety leads to a stomachache or if its in reverse. I'm leaning toward the anxiety leading to stomach pain because he doesn't have stomach issues outside of PANDAS. He's eating a fraction of what he usually does, doesn't have any excess weight to spare and now is starting to lose weight again. This happened last time as well. I can't really blame it on the abx because he was like this last time and we had no abx on board. He did, after two days of Zith 500mg, go to school for a partial day today! He really pushed himself and was very proud, though absolutely exhausted, by the end of the day. He could only pull it off if I was in the parking lot all day. We had to do this to get him in during the thick of his last episode. Anything to keep him going in for at least a partial day. I know from experience when he's feeling better he'll want me as far away from his school as possible. He appeared to have a very successful day except that the stomach pain is back tonight. He said he was nervous all day at school but beat it down. Could this stomach pain simply be the backlash to that many hours of a fight or flight response? He has no appetite compared to normal. Adrenaline and cortisol can do a number on a stomach. I know because watching him crash destroys my appetite. Anyone see this in their child? Many thanks, this board has been a lifesaver in the past 48 hours. Gat's mom.
  10. I have access to the teaching hospital's medical library where I have an office. There hasn't been much that my contact there hasn't been able to obtain quickly for me. If she can, she'll likely email the article to me and if so, I'll be happy to circulate it. I have a message in to her now. Gat's mom.
  11. I have had the misfortune of having my son say, "I quit!". It is terrifying and exhausting. I am so sorry for what your family is going through but you are not alone. Have you tried epsom salts (magnesium sulfate) baths or oral magnesium supplementation? We use both around here, a little trick I picked up in the DAN! protocol. 2-3 cups of epsom salts in a bath (he listens to music, talks on the phone, sometimes just chills out) for about 25 minutes. In our most challenging days, he was taking 2-3 baths per day. Our DAN! likes Magnesium Glycinate for oral supplementation, they can tolerate higher doses. Comes in powder form and I mix half a teaspoon into a couple ounces of 100% grade juice. He can't taste it. Magnesium is a very important supp during times of increased stress. It's a relaxant, sleep aid and antidepressant. Cheap and not contraindicated with anything. And yeah, I take it, too. If he won't do the bath, you can buy mag sulfate cream. Kirkman labs make both. Just a thought. Hoping for a better day for you tomorrow. Gat's mom.
  12. mati'smom, would this be evident to the doctor, re the immune system not competent? or something that would have to be deduced, looked into further? if that were the case, wouldn't one have symptoms of these things, something to show for it? could there be those infections present, but not necessarily have symptoms, however vague? Faith If I understand correctly what some of the autism researchers and parents believe correctly, viruses like cytomegalovirus, epstein barr and the entire cascade of HHV's can, like the heavy metals those kids have problems with, hide in tissue. During that period the patient will sometimes test negative but if successful attempts are made to release those toxins from their binding sites, the patient will test positive and this is considered a good thing. It also brings us back to the biofilm theory which I'd be willing to bet my next paycheck will become a key in treating not only autism spectrum disorders and other autoimmune diseases but PANDAS as well. I've said for four years that PANDAS is like an episodic placement on the autism spectrum. Gat's mom.
  13. Just so you know, we got our son him covered under "Otherwise Health Impaired:. If your son has ever received an OCD or Tourettes diagnosis, that would work too. Had to LOL at the "hypervigilant". My ped's report says "mother wants him on antibiotics all the time because he is always sick and this is her plan to get him well". Sigh..... We have a 504 for my son, have since the 6th grade flare. We, too, are under "otherwise health impaired". We have a mtg set for 1/21 to make changes to the 504 to accommodate what's going on right now if we can get him in the building. I've begun the first steps of obtaining homebound services again. Last time this was a massive stumbling block. I'm more educated now, though, and feel pretty confident I will get the services he needs. Regarding the term "hypervigilent mom"...thank God we are. After 23 years of full time parenting, I'm ready to retire more than I can say but much like wornoutmom when he's sobbing, his life a fraction of what it was just a few weeks before, saying he'd rather be dead than live like this the rest of his life I know that giving up is simply not an option. I am thankful everyday for the intelligence and tenacity the push me forward. He deserves nothing less than a parent who is dedicated to finding the answer that I KNOW is out there.
  14. School is out of the question for my ds16 right now. Can you chime in and let me know if your child is in or out, particularly if it's a middle school or older child. If out, how aggressive did you need to be with the school to arrange homebound services? How do you handle schools, docs, family and casual onlookers who think you've just got a rotten kid or are chasing a quick fix regardless of the amount of research effort you've expended? Hearing how others handle it will help me to maintain my foothold and stability. Many thanks, Gat's mom.
  15. Agreed...it is life giving to me at this point. I told him about you this morning when he tried and failed to get to school again. I have searched back through three years of medical journals on him and we have never tried Azith at 500mg, only 250mg and then only in short doses and even that was when he was very deep in an episode. No steroids have ever been tried. Dermatologist, if necessary. My dentist who is a good friend and has watched me go through this with him for years, you bet. My ex-bf who is a doc in another state, absolutely. Whatever it takes. I've done the homework. I knew the answer three years ago and let others pull me away. I'm very thankful for what I've learned on the DAN! it has served us well. I strongly suspect a biofilm but even so we still need a robust trial of abx. You've all been wonderful, a Godsend for certain. Gat's mom
  16. Further...that's brilliant about the dermatologist for abx. Yes, he does have acne, enough to warrant the abx. I am not opposed to sliding in a back door to have his needs met. I gave up conformity when it was clear how many times he was misdiagnosed. You rock!
  17. Vickie, I will have testing ordered on his sister and I. She just finished nursing school and will be living at home for a few months before moving out on her own. All the more reason to get that boy on some sort of aggressive protocol stat! I have noticed that things get a big better when he takes Ibuprofen. He's on a good deal of supplements now as part of the DAN! protocol. We will be keeping those on board as they all support a healthy, but moderated immune system and address some of the focus and ocd symptoms from a natural standpoint. Thank you so, so much for your response. I feel 100X more understood and less isolated than I did this morning. Gat's mom
  18. momto2pandas, You have done more for me than you realize. He doesn't think his life will get better, he is beginning to believe he's been singled out for a "horrible life". He doesn't want to fall behind at school and the anxiety of going is wearing him down to a shell. He beats himself up for being weak and feels the pain of it all so intensely (who wouldn't?). I can understand where he gets this thinking, particularly since he's feeling his emotions sooo powerfully during this backslide. At 8 and 11, he was only thinking about the now. At 16, he's wanting some assurances that he gets a good life like everyone else. I can now, honestly, tell him that I know of someone who had it and has grown up, on and away from it. You're correct about the talents though. His the most intuitive human I know with a deep streak of understanding and compassion, neither of which have been returned to him in great depth by our school system. I will review the book but think it sounds fabulous. These are the hardest days we've ever experienced (in all 3 episodes). I wondered today how in the world I'd get through it again and be optimistic, calm and focused for him. You were right on time, such a benefit to me. Thank you so very much. Gat's mom
  19. Vickie, thanks so much for responding. He started tonight the only abx I could get his DAN! to prescribe. 3 days of Azith 500mg bid, followed by 250mg twice a week for a month. I would be highly surprised if that was enough to bring about significant change in him. We need significant change asap. He wants to be in school but the anxiety about being there is more than he can do. This is worse than at age 11 where he didn't want to be in school at all. I've been reading everything I can find on biofilms as well and we're actually following (since thursday) Dr. Usman's protocol. Very interesting information that I believe may help us get the most out of abx treatment. He's had titers drawn that were wildly high. The rest of the house has never been tested, though I have a long, ugly pediatric history of urethral strictures which an herbalist we know says is almost always strep. I believe I have a kid with multiple layers including some heavy metals from an MMR at 15 mos that went way wrong. Strep is just the one that grinds his world to an immediate half. I'm looking up TracyRee now. Thanks, again, so much for the lead. Gayle
  20. Hi all. I'm new to this group but no stranger to PANDAS. My son just turned 16 and is having the biggest backslide in 3 years. This is his 3rd major backslide. At age 8, it went completely undiagnosed, at 11 it took four months of searching his symptom cluster online until I found it, after which I could not get a doctor to buy into the theory (despite ridiculous titer levels and easily meeting diagnostic criteria) until I finally cross referenced the disorder and its prevalence in the Autism community. My son's not autistic though. From there I found a DAN! doc who was willing to think outside the box to a degree but by no means the PANDAS expert some of you are clearly aligned with. My son has never had a trial of abx therapy that lasted more than 2 wks. He was eventually given some relief with Fluconazole (antifungal) as we knew he had yeast issues also. He recovered eventually and we've had a wonderful year and a half with only occasional blips of ocd, panic and separation anxiety. It's back, it's bad and he's 16. He knows how life was just a few weeks ago, he also knows how bad it gets and how long, historically, it lasts for him. Any advice on how to handle the emotional lability piece at 16? momto2pandas, your post from 12/2 reminding us that many (some say most) go on to live happy lives despite lack of cutting edge treatment has saved me today. Thank you so very much. I'm in East Tennessee. Any doc suggestions for the south? We need a steroid burst and abx yesterday. Many thanks, Gat's mom
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