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hugs2day

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Everything posted by hugs2day

  1. Hello, My DS8 whom has been treated for PANS/Pandas and suspected Lyme for 2 1/2 years with Azithro daily with occassional 2nd antibiotic added and also the last 4 months with flagyl and diflucan recently went from 90% to about 80% so we decided to pull away everything (including most supplements, only left a few dosing daily) slowly and get a new baseline. The waters were getting muddy and he also had an elevated liver panel for the first time ever so it was necessary. Well taking him off everything he looks better than he has in a long time. Eyes look good, skin, sleep good, for a whole 9 days. But on day 10 he had some intrusive thoughts usually either early morning or late evening but is stable the rest of the day. We pushed through the scary thoughts with talk therapy and strategies of talking back to the ocd. He is still holding strong today but I fear the signs of intrusive thoughts creeping back in are indicative of something bigger coming. I am treating him for allergies as I know pollen is high here where we live. That helps some. He has Gut issues since birth, chronic constipation and tends to get his intrusive thoughts right before he is going to get a bowel movement. He is getting scoped in a couple of weeks but I don't anticipate a breakthrough. Mainstream doc that wants me to give him miralax daily for the rest of his life. yada yada I am going to try diet changes because I was thinking maybe leaky gut triggers his PANS. He used to have chronic impetigo but that finally stopped. It seems his immune system is trying to wake up and act normal. He responded normally to a stomach virus this past fall and actually threw up. That was a first he usually suffers with just behavior but won't mount fevers or respond normally to illness. I really think the main issue triggering PANS is now yeast. I think his gut was a mess before treatment and now is a bigger mess. Here is my question? Should I go back to giving Azithro every 3 days prophallaixis dose or continue to push through. I feel like if I do I counteract the efforts I am making trying to clean up the gut, which is likely the trigger. Or is the zithro needed to modulate immune system and prevent a breakdown.? He is never well for more than a couple weeks since the first huge episode two and half years ago while on antibiotics and now while off its the same pattern. I am so confused. Sorry for babbling I just need some support and maybe it will help me find clarity. Thank you for reading.
  2. I posted that my son is dealing with the yeast beast since we had to stop using diflucan. Its been 3 weeks with nystatin and its not holding yeast at bay actually I feel as though symptoms are getting worse. Deep itching, anal itching, waking up at night, constipation, giddy most times, climbing, then sometimes sad usually at night around bedtime (almost looks like pandas). He takes 1,000,000 units daily oral suspension. I read on internet that Nystatin (nystatin oral) is an antimycotic poly-ene antibiotic obtained from Streptomyces noursei. Streptomyces noursei are gram positive. Do you think this is related to strep? Could the nystatin be triggering PAnDAS? Any knowledge you all can share please advise. Thank you.
  3. I talked to her at a conference not too long ago about my sons case. She doesn't like antibiotics she believes they will eventually stop working. When I told her what my son takes she raised a worried eyebrow and recommended I give my son goldenseal. That is really all I know of her.
  4. Are amphotericin B pills very big? I was reading this might be a good alternative. Also have you ever heard of Nizoral taken orally? I read about it in Dr. Crooks Yeast connection book just a bit ago. Going to ask the dr tomorrow but he will probably just agree. I am needing to switch docs cuz I am feeling like I do all the research and suggestions and he just writes the scripts. Sorry just venting on the last sentence. Thanks for your feedback.
  5. My son can get hyper from probiotics. I have to monitor which strains and dosage to then rotate. I know lot of families say to give before bedtime but that works against him so I give last dose of probiotics about 6pm or 630. I give probiotics 3 times a day. They are important to give but are not always tolerated well. Dosage and strains matter to my son.
  6. My son had this and it was acid reflux. I think all the stuff he has to take to get well took a toll on GI tract. He loves pepcid and alka seltzer gold (gold version does not have aspirin). These two things give him relief and actually seem to calm down his anxiety.
  7. Same thing happened to both of my kids. The GABA supplement caused panic attacks. I figured it out pretty quickly and said never gonna try GABA again. The doctor thought it was weird but didn't say much.
  8. look it up on www.ourkidsasd.com and it gives the dosage. I just ordered it for my son cuz of yeast issues. I hope it doesn't taste awful.
  9. Same here Pepcid was a Godsend. Our son was being triggered by severe acid reflux that looked like flight or fight response. Alka Seltzer gold is a huge help too when in a flare.
  10. The oat test was thru Great Plains and the stool test was Doctors Data both kits were ordered by the dr. We tried Amphotericin but the liquid tastes like paint. Really awful. We are sticking it out with Nystatin and also removing sugar. No more GFCF french toast as that seems to be a trigger after eating. SF mom I did not know yeast can be contagious. That is scary. I'm so stressed with his health, the treatments are now part of the problem. Thanks everyone for all the suggestions we are doing most of them except homeopathy I will research some on homeopathy but I don't have a doc for that. Sorry - I seem to have lots of questions today. What is SBC? Who's OAT test did you run, and which specific test? Thanks so much.
  11. Hello Need some advice. My son has been under treatment for 2 years 4 months and has had a tremendous amount of progress with Azith/Bactrim or Azith/omnicef, but we have a setback. He has clostridia and yeast and slightly elevated liver panel. Doctor says to use Nystatin instead of diflucan. He thinks diflucan is to blame so we have. We are giving nystatin 3 times a day per doctors orders going on two weeks but I can see yeast is back under nystatin. Diflucan was much better but I cannot give him that, so I need advice on diet and naturals. My son cannot swallow pills he is 8 but refuses to swall pills so we use liquid and compounded liquid or powder for everything. For yeast I use olive leaf extract liquid Sach B Probiotics multi strain The treatment for clostridia is flagyl which also increases yeast. My poor son is in a viscious cycle. It was suggested that maybe hyperbarics would help. I don't want to do that though because he still has swollen lymph node behind right ear and pressurized oxygen can blow out an ear drum. The clostridia/yeast problem is triggering OCD/PANS symptoms. OATS test shows yeast and clostridia. The first time he did the test 1 year ago the test was negative now its positivie. Any advice is appreciated. Thank you.
  12. I have autoimmune disease and my kids have pandas. I had an enlarged spleen and other organs in distress several years ago when we were all going downhill. I was treated with minocycline and steroid infections. I got better fast. Like back to myself within 6 to 8 weeks. It has never reoccured. Glad you found a good doctor I am sure treatment will be all the difference. Best wishes.
  13. My son had this symptom it was not RLS just at the time looked that way. His iron was fine. It was clostridia. Flagyl got it all to stop.
  14. is she getting in any teeth? that is a trigger for a lot of kids when you can't quite figure out the trigger. If so, xylitol helps kill the mutans. gum, rinse and toothpaste is made with xylitol. xclear/spry is very good brand. Everyone gave you good suggestions just want to say Omnicef has helped my kids when other abx stops working. Hopefully the azithro will do it for her but she will need more than 5 days so you may want to get a pandas doc on the phone soon. Sleep is very important you can dose melatonin as high as 3mg but I have never gone higher than 1mg when my kids were at there worst and it sill worked. B vitamins are activating when in pans so keep those at bay until she is better. Also Coq10 is activating so if its in your multivitamin stay away from that until she is better. We supplement Taurine, vit d and vit c and magnesium when in flare. When not in flare we use all the rest etc. etc. Is she constipated? Gut issues sometimes cause flares too. Hang in there and try to keep her comfortable. If she is focused on her nose maybe you can get her a saline spray to help clean it out. Xclear makes a good one and it will strep in sinus cavity too..
  15. Does treating the MTHFR defect help the ocd? I ask because I read that serratonin is made in the gut and my son has gi issues ...significant gi issues. I notice the health of his gut effects the health of his brain (serratonin effects causes the OCD) and I didn't notice this until I started treating PANS. The OCD is pretty significant now (rituals like sammy had) and it didn't used to be but the flares for PANS are fewer. confusing.
  16. It was 15 mg. only new thing I introduced this week. interesting you mentioned GABA, my son had a panic attack when I tried to supplement GABA. I thought it was a fluke so I gave to him and my older son on a different occasion again thinking it would calm the anxiety and it did the opposite gave them both panic attack. Yes possible herx with zinc it must be he is out of balance on copper zinc so I am going to talk to doc about diagnostic test to know what we are looking at. He has had parasite problems and it is a full mooon. i never put much stock in that but I guess that could also be a possibility. So I started him back on flagyl tonight it always helps. Thank you.
  17. If he has gut issues steroids could turn on him they cause yeast. With kiddos that are sick a lot like mine and (sounds like your too since a young age) steroids can go either way. Went south for my son. I still might try steroids again later after cleared all these infections but I agree he is too young and more tests need to be done to rule out infections. You might want to try Flagyl and Diflucan, it could be gut issues triggering the pans. that has been the case more than once for my son. Also are you using any supplements?
  18. My son has white lines on fingernails and dry skin, chronic infections, yada yada yada. Sick kid and I had read good things about zinc so I started to supplement with DAN docs blessing and by day 4 anxiety increased, chewing of his shirt started, ice chips chewing... and overall saw a slip backwards. Clearly zinc not a good thing. After doing some research I assume it has something to do with copper. not going to supplement anymore. I have an appt with doc in a couple weeks but wanted to know what this forum thought about it. Is this indicative of a methylation issue? I get so confused on the zinc/b6 but I do know there is clearly something to this I witnessed it.
  19. I'm confused how my kids got it too, but I'm starting to find out that their immunology testing shows low immunity. Common variable immune deficiency therefore, they could have contracted lyme and any other parasite because they are vulnerable to infection. Was your son sick before the PaNDAS? Was he a sick kid? i.e. ear infections, throat infections, etc. My kids were. Like SFMOM I got sicker with each pregnancy and got real sick when my youngest was 3 at the very same time he was showing signs of being very sick. Surprisingly I am doing much better now with naturals alone whereas my kids are just uncovering more layers of medical issues with antibiotic treatment but are dependent on antibiotics to stay stable. Naturals don't cut it for them. I know your son has lots of stomach pain and weakness did the dr. rule out a flagella bacteria?
  20. My older son did not get better with Azithro. When doc switched to PennVK he got better within 3 days. He was pretty bad off at the time so it was very obvious the pennvk was working. Try another antibiotic and see if you can get an antifungal too to cover the yeast and probitocs.
  21. My kids did well with omnicef initially but it stopped being effective in keeping them well and the PANDAS flares at bay. Later they switched to Azithro which did work like overnight for my youngest didn't help my oldest at all. My oldest switched to PennVK and that is what worked for him. So sometimes it is finding the right antibiotic and the right dosage. My youngest still takes daily Azithro, my oldest can be off antibiotics when school is not in, when schools in he takes PennVK this is what works for them. Sorry you find yourself here but at least you have a great dr. on board.
  22. My youngest son is again in a flare and as I look back through his bloodwork for the past several years one marker stays high in all testing. IgG subclass 4 . My sons is 160 the range is .04-98 . Its always that high going back to 2010. I did some research and found it is indicative of pancreatic autoimmune disease. I have asked about this marker before but was told it could also indicate chronic infection. Duh I know that. But my son does have a lot of abdominal pain and gi problems and a positive ana titer. I have an appt with specialist in a few weeks for him, but wanted to know if anyone else on the forum has any experience with this marker. My son clearly has symptoms of autoimmune disease non specific and ofcourse PANDAS. he has a history since birth of chronic infections including strep, staph, myco and impetigo. GI dysbosis, acid reflux, occasionally joint pain, every symptom of PANS/PANDAS and he has a lymph node enlarged behind his right ear for over two years. The mayo clinic site lists most of those symptoms under Autoimmune pancreatitis (AIP) as an increasingly recognized type of chronic pancreatitis. Another rabbit trail... or something to it. Any feedback appreciated. Thank you.
  23. GI issues are a big challenge for my kids primarily constipation and acid reflux is the biggest issue with my youngest son whom is chronic pans/lyme. He is doing much better though after two years of multiple rotating protocols: Product that help in rotation not all at the same time are: Oxypowder (magnesium oxide not absorbed well will move bowels fast) don't need to use anymore but had to early on daily. Natural Calm (magnesium citrate/combo will usually get a bm also throws some water on the fire in the brain too) Magnesium Glycinate 200 mg (well absorbed by the body can tame down anxiety and get bowel movement) Vitamin C 1000 mg daily (higher doses the body excretes and is antioxidant) Georges Aloe 1 oz (more of this he complains his tummy hurts) ABX support probiotic by Prothera 1 in the am and 1 in the pm- great multi strain probiotic that also includes sach b. Flagyl ** major help in healing the gut. ( I am sure it is treating a lot more than just cdif). Alka Seltzer Gold helps the alleviate the symptoms and sometimes I notice a bm will come after drinking this. Pepcid also helps. All the above is recommended and monitored by my sons' dr, but has shown to work for him. He is very sick kid and after two years of this nightmare rollercoaster ride, the gut has improved drastically, but I notice if I let up on the supplements because I feel he is doing well he will relapse into PaNs within two weeks. He is dependent on so much abx and supplements...but they work. I think if you can keep her bowels moving you will see other symptoms like mood improve. Good luck.
  24. My son just experienced this a few weeks ago after he was given bactrim. We had to stop the bactrim and the doc prescribed Flagyl because it helped his gastric attacks previously. By day 3 of Flagyl he could stand and walk around without nausea. Every day got better and better and it was clearly due to the flagyl he got better. He is doing great now. We think he had overgrowth of bacteria in gut.
  25. All I can suggest is try treatment dose of Penn VK or Augmentin and have Flagyl on board to cover for the cdiff. it helps my son. Maybe diflucan too it sounds like a lot but each one has its place in treating a flare. I'm sorry your daughter is going thru this I hope it passess soon.
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