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Everything posted by hugs2day

  1. I know some of you have mentioned this disorder on the forum and it has been on my mind for awhile. Seriously thinking this might be my youngest son's problem. Do I ask regular dr. for test or should I pay consult to pandas dr. to order test? Is it run by Quest or specialty lab?
  2. We had the same cycle early on with my youngest son. It was a two week cycle then a weekly cycle (Thursdays). The cycle finally stopped after adding flagyl for 21 days and repeating for 3 months. It was the treatment that put my son over the hump. The cycles are gone and he has made greater strides in healing. He had a lump behind his right ear at the onset of PANdAS diagnosis and after the 3 months of flagyl the lump is gone and so much of the ocd went away (the worst of the ocd went away). Some improvement on anxiety and no more rages. It took a lot of antibiotics. daily zith, occasional 2nd antibiotic like Keflex, omnicef, or Bactrim and then flagyl was added and then the fog lifted. This month on Oct. 29th is the 3 year mark of the day I lost my son to the madness of PANDAS, he is about 90 percent now with antibiotics and supplements and other efforts. Never could get IVIG approved by the insurance company but he always responded well to abx.
  3. We had the ping pong problem with impetigo and strep for years (2 boys 2 years apart and they used to share a room). Both would be on abx and it was still a problem. I had to go hard core to try to eliminate the source. Keep kids apart (separate bedrooms, separate tooth brushes, separate toothpaste, etc.) Replace toothbrushes and toothpastes frequently. HEPA filtiers with blue light in bedrooms. Replace utensils strep is very hard to kill. A doctor at the minute clinic suggested I clean silverware well in Clorox I threw it out instead and bought new. I also took a step further and for awhile only used disposable throw away spoons and forks, and cups and plates. Basically I had to become a germ detective. I bought an ecoquest machine that kills viruses, strep, staph, mold. This is an expensive machine but I feel it helped. I also have the kids chew Spry Gum, Rinse with xylitol mouthwash, and spray Xclear xylitol nasal spray daily. Over the past 3 years I replaced all toilets, sink handles, use Clorox on all handles, remotes. Avoid public pools, chuckee cheese, etc. For the first 2 years they were both on daily abx. I currently have my oldest completely off abx unless he is sick he has been doing good for nearly a year now and my youngest can go off abx for long period of times but still has issues with impetigo and flares when losing teeth as well but nothing like he used to. Major improvements in both of them with a lot of extra steps to eradicate strep or other viruses from surfaces and airborne. It sounds extreme but their health called for extreme measures.
  4. FYI- Webinar tomorrow 9/24/2013 sponsored by TACA for those of you who have kids with autism and pandas. You have to register.
  5. Aside from Quercetin, Vitc and Zinc. We have our son use Xclear Xylitol nasal spray, shower to wash off allergens, he has Oreck Hepa cleaner in his room and we run an Ecoquest machine in the house for a little while each day. These machines seem to have helped tremendously. When things are bad I use allegra it does seem to help but I have not given to him in a long time and he is doing great on just the above.
  6. My oldest son is a ticcer with pandas and ofcourse ocd but for a year we tried first augmentin and then azitrho neither touched the symptoms enough to say that we were convinced it would ever be relieved but when the neuro swtiched him to PennVK as a last ditch chance before we tried clonodine --- PennVk was the answer --it worked. He had dramatic improvement in all symptoms within days and then weeks and then a year and half later he is off all antibiotics. So sometimes the treatment just calls for another antibiotic or sometimes two at once. My oldest son responds well to Penn VK and Omnicef. My youngest to Azithro and Keflex and Omnicef. Neither did well on Augmentin or Bactrim. Also some DAN drs recommend against flaxseed they prefer fish oil. My kids never took fish oil because of side effects but I feed them foods with omegas and add chia seeds to a lot of dishes. Definitely check out lyme and all other co infections and viral load as well. My children definitely had a lot of chronic infections and the antibiotics along with supplements have had the biggest role in their treatment plan and they are both doing well for the most part. I wish they were cured but they are not. I never did IVIG with my boys because the dr. told me no bother doing it if the infections aren't cleared and they are not. I hope to get to that point soon. Good luck to you. I think in a way we are all playing dr's even when we have Pandas docs willing to help. FYI_ not sure if you have changed your son's diet but I heard from a mom whose son was ticcing really bad full body tics and gulping and she changed his diet drastically and has seen dramatic improvement in the tics. Eliminated the worst of them. She is cooking every meal for him he is not allowed to eat school lunch. Only good healthy whole food and he had a huge turn around in symptoms.
  7. my youngest developed impetigo on his hairline at forehead at the start of the year and now my oldest has impetigo on scalp at back of head. The problem for my youngest started several months ago around Februrary and has been cycling. He will get well with 7 days of Keflex and then be well for 4 to 5 days off the keflex and then the impetigo is back. He has a huge yeast issue now so that has thrown gasoline into the fire. The impetigo is clearly a trigger for Pandas he will get intrusive thoughts and cry and scream with terror. Never a friggin break from strep. First years of strep throat then T&A put an end to that and now impetigo is cycling. My oldest had been in remission since January and antibiotic free he is now ticing and back on penn vk and omnicef. he is doing well enough to function though he pulls out of it quick with abx alone. My youngest is relapsing to scary places though. I really need to eradicate this impetigo cycle from his body. I started Diflucan and the herx is too much. had to pull back on the dosage. he has not been on Difilucan since February. I really don't like to use Diflucan but nystatin was not doing enough. If he would eat even a GFCF cookie he would start crying. Ibuprofen and alka seltzer gold are both helping with the herx and provide relief for him. My husband and I are fine no rashes or symptoms of strep. Its just them. I keep a super clean house and use Clorox on all surfaces that strep or staph can live on. My kids have good hygiene daily. Something to note is they both are experiencing stomach pain with the impetigo. Thinking about trying goldenseal. Anyone else have problems with impetigo?
  8. trintiybella, Has she ever had Flagyl? When my son was in crisis and we also suspected BART Flagyl was a saving grace. I can't tell you what a miracle drug it was for my son. This was after years of doing well on just Azithro. He had a swollen lymph node behind his right ear for 2 and half years and then when he took flagyl for 21 days with one week break in between and then a second go around the lymph node disappeared in addition to the suffering from neuro psych symptoms. I still have too use the flagyl on him occasionally because he will relapse somewhat but at least it gives him relief for long periods and the fact that the lymph node went down tells me it treated something. Good luck finding some healing for your DD. Its heartbreaking how much these kids suffer. If she cannot sleep have you tried 5 http and melatonin liposomal it works fast.
  9. Does this doctor treat Pandas? Or does he do spinal tap for NMDA receptor? I have been curious since reading the book Brain of Fire. My son was born with a Tetratoma that had to be removed at 9 months of age. it had teeth, bone, skin, etc. So I am very interested to hear more about this dr. Sorry not trying to hijack this thread just very curious to hear more about this dr. I was not aware families were getting into see him for PANDAS diagnosis.
  10. Amy, I will share my childs story incase it can help you. My 5 year old had chronic pharyngitis (strep sometimes) for about a year. He got T&A and the throat thing resolved but then it turned to impetigo cycling every 4 to 5 weeks. Teeth are also a trigger for him when getting in permanents. Tooth decay is made of streptococcus mutans so it is likely that was the source of your childs flare unless she also gets strep throat. For my son I would definitely say the T&A was beneficial his tonsils were touching and he was chronic with throat infections. But I would highly recommend pre-medicate with treatment dose abx before during and after procedure. We did not get that for my son and the procedure sent him into a terrible long flare. We just didn't know about pandas at the time we thought we were dealing with chronic strep and autism but that was not the case. He is 8 today and has come a long way and my husband and I are not sure he ever had autism its likely he had been suffering from Pandas for a very long time. Teeth are still the biggest trigger for him today. Zithro is the abx that helps him the most and brought him back to us many times. He has not had IVIG just abx and always is improving with setbacks that are much less in intensity when they occur. Whatever you decide good luck If you get the T&A request they are cultured for resistant organisms I wish I had done that.
  11. I dabbled in homeopathy but found I prefered the big guns so I am not too much help with homeopathy. Although I did find that phosphorous 30cc helped my oldest tremendously when in a flare. Sorry your DH is feeling deflated I know the feeling as timing is always bad for us on vacation as well. This might sound kooky but Alka Seltzer Gold calms down our youngest son ( the most difficult) when we are on the road we give with ice chips and it changes his mood. We know it changes the pH in the body and the ice chips keep him occupied probably helping with digestion too. Some forums say it is a detox, I have also heard it helps with lyme symptoms and for us we think it helps with die off and yeast. Not sure which is which but I can give my testimony it helps. The other thing is Ibuprofen. I hope things get better. This illness is so hard on the whole family. Take care.
  12. Some of the doctors on the list will do a phone consult and fax in the abx same day. I had to do that the first time because my son couldn't even leave the house. Thank You Dr. *** in CA ! he saved our lives. At first we tried Augmentin for my son and I saw slight improvement. My son was bad off when PAndas hit and it was literally overnight exorcism. Then I called the dr. back after 9 days with mild improvement and he said lets switch to Zithro. I saw immediate improvement in my son that day very dramatic. He has been on zithro since and sometimes even off zithro for long periods because he is doing so well. My point is you might have to try a couple different antibiotics and you will definitely need a pandas doc. Just pay the cash and get the help immediately once you get your son stable you can start educating your local docs. My son's pediatrician initially thought I was a kook but after he witnessed the turnaround no thanks to him, he know will support a script when needed and I also found a local neuro a year too late but at least we have a team of dr's on board locally. It takes time to tweak what works best and what doctors you can trust and also doctors that are available. You need them to be available incase your child goes into crisis from a flare. Also keep a journal daily of your sons symptoms and improvements. There are some supplements that help initially too like melatonin, vit c, magnesium, etc. My son used to take a lot of supplements at his sickest but now only takes a mutlivitiamin, probiotic and prophylactic antibiotic. It took nearly 3 years to get to this point. He will get better and this forum is a blessing. My darkest saddest days were spent on this forum doing research and seeking hope from other parents and that is why I have been able to help my son get better. He is not healed but he is under good treatment. My son is currently in a mild flare due to a loose tooth in the past this would have sent him in a tizzy and our household upside down but this time very mild. It will get better for you. Sending you cyber prayers for your son.
  13. I would recommend this website for monolaurin. www.ourkidsasd.com its the lee silsby compounding pharmacy. I trust the products on this website and you can search under yeast management for all the products that will help including monolaurin capsules. Also my son also can have the drunk look when yeast is flaring and an extra dose of sach B in the evening helps. Good luck.
  14. I started using melatonin on my then 5 year old 3 year ago. only .05 mg even though the doc told me to use 1mg and I could go as high as 3mg. .05 mg always worked. Sometimes when he passes the sweet spot where the melatonin would have worked to put him to sleep I have no choice but to add .05ml of dye free benadryl. he drifts right off. The sleep is so important to reducing inflammation and healing and my sanity. I think all drugs will have warnings and precautions to protect companies from people who over use or over dose. IF you are uncomfortable with melatonin you can try Calms Forte a natural homepathic supplement for sleep. Found at Target or Walgreens. Sometimes Calms Forte won't work during a bad excaberation.
  15. My son 8 has been getting impetigo since the onset of PANDAS 3 years ago on a chronic basis. Its always high on his forehead around the hairline into the scalp. Keflex clears it in a few days. It reoccurs every 4 to 6 weeks. Anyone else having trouble getting rid of impetigo. Any ideas? Currently using Olive Leaf Extract, Azithromycin, clean house, replaced all things that can bring mold, run ecoquest to kill germs, plus other supplments and vitamins. The impetigo does trigger pandas for him. Kind of like teeth coming in triggers him also. Will be a few rough days then gets easier .
  16. When my son experienced this OCD scary thoughts and magical thinking he started Flagyl and it brought him immediate relief. His dr's suggestion and he was right. Now he only gets instrusive thoughts like briefly once/twice a day or not at all mostly in the morning before I give him flagyl. I am told its likely clostridia and that is what the flagyl is treating. I still suspsect lyme but it is inconclusive.
  17. Look up Dr. Tim Buie or Dr. Arthur Krigsmen both cuting edge docs willing to help the chronically ill. We are currently collecting stool samples for Genova to see if my son has parasites or what is going on with him. He has major gut issues contributing to his panda flares. Also suffers from chronic impetigo very hard to eradicate. Good luck.
  18. mdmom, Read some of the old posts from Dr. T on this forum he often mentions GI problems associated with Pandas. I am copying and pasting one of his commments from 2010 below: (this is Dr. T) We have recently found almost all children with PANDAS-like illnesses harbor anti-flagellin (p41 on Lyme Western blots) antibodies, indicating chronic infection with flagellated bacteria. This association is very strong, much higher than the association with either strep or mycoplasma. This could, in fact, be the infection that sets the stage for trouble, even before strep arrives on the scene. There are many gut active bacteria - including Helicobacter, Campylobacter, etc - that are flagellated. FYI this is me- my childrens first symptoms before a flare for years was always stomach pain and gerd. I started treating the GERD with Pepcid and Alka seltzer gold. they improved and so did their appetite.
  19. LLM- I have explored Lyme but cannot get a conclusive test. When we have tried adding a second antibiotic initially he would improve but the past 9 months are different. When he gets infections while on Azithro the second antibiotic that is prescribed will actually trigger a flare which the doctor believes is clostridia due to long term abx. Flagyl seems to be the only thing that will help. He keeps getting impetigo once we tried bactrim by the second dose his PANdAS goes into a whirlwind only flagyl can help. Another time Keflex was abx for the impetigo by day two once again he was sent into a tailspin of pandas. The DAN doc says clostridia can look like pandas and that is what my son is dealing with. We cannot remove Azithro but cannot add anything else and Flagyl is used to keep down the clostridia. My youngest is in a viscious cycle. Gut seems to be ruined. I found a new doc I want to get a consult with that is both DAN and LLMD. My older son still holds strong in remission. 3 months without abx. That is one silver lining.
  20. My son has been in and on/off flare for almost 3 weeks. I think Allergies is partly to blame. Anyway the past 4 days he wakes up with really bad anxiety and ocd intrusive thoughts. Takes a lot of care to get him out of bed. Whatever pops into his head when he wakes up he argues that its not evil. He is 8 but still likes to watch Backyardigans or phinieas and ferb and he will think about turning on his tv then yell and freak out screaming "its not evil". Nothing has really changed in how I treat his illness that I can think of, this OCD intrusive thoughts are new for him. He literally looks confused then screams, then pupils dilate , he cries not even knowing I'm there then he is out of it. It doesn't last that long but it is clearly like an attack on his bran. It is scaring me and clearly my son is scared which worries me more. So I have literally been giving him breakfast in bed. He gets better after he eats and then will usually get up get ready and have only minor blips along the way. He is on longterm Azithro which keeps him at about 85% well, never had an IVIG and often has to have flagyl to pull him out of flares. Also takes nystatin. But the morning wake up part is awful the past few days. . I give him melatonin right before bed, he is taking allegra for allergies, Ibu if needed before bed, probiotics b4 bed, and I have been doing that routine for awhile and never had this morning fearful waking issue. During the day he has supplements like Vit D, Vit C, Zinc, and multi. Anyone else see this with their child? What do you recommend? Thank you.
  21. Have any of you seen Night Sweats with flares? My son is in a flare triggered by some weird skin infection, *bumps on forehead) and anus. Pediatrician says could be impetigo he is not sure. He prescribed Keflex which seems to be making things worse. HE is raging and crying and has intrusive thoughts we havents seen that in a long time. Anyway last night I checked on him an he was soaking wet and so were his sheets it was all sweat. What do you think this means?
  22. Thanks for all the posts. I did add Azithro back to the mix at 2am Sunday morning as he woke up with irrational fears, intrusive thoughts in his sleep at first then he woke up and was crying. Then fell back asleep and then woke up crying. . Clear sign of PANS. I also gave him nystatin. He is declining some, we asked the dr. to retest liver this week and are waiting for a Quest slip. Today he woke up agitated and dialated eyes. So we are treating with IBu/nystatin and supplements. Tomorrow we give Azith. Hoping his liver panel is back to normal. Will know by the end of the week. It is a dicey time. I feel scared all over again like the early months several years ago. We have come full circle and not in a good way. I hate this disease. SFMOM _I am going to PM you. I do need a new dr. for him to get second opinion and new perspective.
  23. LLM, Just throwing this out there something to consider might be the start of puberty which can do weird things to any kids brain. My son is 10 and is starting puberty early. Dr. confirmed it and I was actually going to post if anyone elses children are showing early signs of puberty it does seem to trigger OCD. Just a thought. Good luck in your search! Your the expert in my opinion as you have been so helpful to me in my families situation. Another thought is maybe he is getting his 12 year old molars. Keep us updated. Thank you.
  24. I should add that he had a long history of strep and had to have his tonsils removed because they were touching when he was 5 then Pandas showed up 6 weeks after the surgery. Then he went thru a phase of chronic impetigo. Now it seems to be yeast cycling can't bring down yeast his symptoms are the deep itching, foamy urine , ammonia smelling urine, giddy, climbing and brain fog or agitated. He had yeast test thru Quest negartive, yeast test thru great plains positive. Same with clostridia. Western blot and Bartonella negative. haven't been able to do Igenix. The new dr I found is recommended on Pandas network and treats lyme and pans so I am hoping to get more answers. Like the testing for MTHFR I brought that up to current doc and it really didn't go anywhere.
  25. Flagyl was 4 months at 15 days straight each time. It cause yeast so he was prescribed Diflucan in conjunction. Initially Flagyl was giving amazing results a healthier happier child and great poops. But then it seemed to turn on him and caused severe ocd rituals . Now that he is off the med the ocd rituals have stopped. He just has the occasional intrusive thought. And its always the same intrusive thought that he didn't win. Gets upset cries wtih anxiety and fear and gets over it quickly. Neuro thinks it could be simple partials causing it so he is scheduled for EEG on the 19th. I believe in my heart with all my research and journaling of his symptoms the answer lies in the gut. He is just a mess in his GI tract. He loves alka seltzer gold said it makes him feel better and gives him energy. He is constipated since stopping all the antibiotics even though I have increased his probiotics. I stopped the nystatin too but I am thinking about adding that back in. It seemed like the die off was too much for him. I do see improvement when he drinks activated charcoal but I am not sure how safe that is to give to him on a recurring basis. I feel our doc is a little bit of a loose cannon and switching. Very confused that is why I want a knew doc knew perspective. I am also trying to figure out how to start the SCD diet not easy. Thanks.
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