cobygurl

Hi, Back at the end of February my 2 year old started a tongue rolling tic. It went away for a week after our ND gave him an antiviral homeopathic/tincture and then seemed to morph into a shoulder shrugging tic. That tic lasted about a week and disappeared (in which time our GP did a swab for strep that came back negative and discovered he had a heart murmur that she believes is an atrial septal defect). We are now waiting on a paediatric cardiologist to make a diagnosis. On top of this, he has now started some sort of hard blinking tic. It’s not constant but when he does it there are several in a row and it looks like he’s trying to clear his eyes or focus. It’s worse when things are colourful or there is a lot of pattern. Worse too when he sees screens (we try to limit his exposure.) Honestly, I am so overwhelmed and feeling devastated by all this. What do you recommend I do if the swab came back negative and the GP wants to concentrate on his heart murmur? By the way, any kids with murmurs? Did any start when you first discovered PANDAS/PANS symptoms? Thanks in advance for any advice.

Please help. I have no idea what to do...Hopefully some of you can shed light on this for me. My 9 year old is dealing with Lyme, Babesia, Bartonella. He is currently on herbal supplements and his LLMD/integrative medicine specialist wants to add 30 days of Doxy and retest in a month to see if he needs further treatment. I have read that sometimes Doxy can be ototoxic to the ears and because I have had awful tinnitus and ear issues I am afraid that taking Doxy for my 9 year might end up causing a similar problem for him. I have also heard hat the other choice instead of the Doxy is Amoxicillin. Is this true? Should I ask the doctor to reconsider and give him Amoxicillin instead? Also, my little guy has no symptoms whatsoever. At this point we’re treating based on the positive test result and not symptoms. He is currently on an herbal tincture addressing Lyme, Babesia and Bartonella that was given to him by his naturopath. We notice that when we up the dose, that he does experience some herxing but that is the extent of his symptoms. I should also mention that we have been treating Lyme since he was 6 and that he cleared it the first time only using herbals. We are treating again because of a bite he got in late August. He has been on herbals since then. His naturopath feels that because he has no symptoms that starting the antibiotic treatment could make things worse especially since he says Doxy is great at killing the spirochete but creates more cyst and biofilm forms. Sorry, if this sounds confusing, I’m just feeling nervous and not sure what to do. Thanks for all the help!

Hi All, Feeling a little nervous. My 9 year old got his test results back from DNX Connexions and needless to say he's come back with several positives (Bartonelle, Babesia and Lyme.) Our LLMD wants to put him on Doxycycline. Has anyone used Doxy with their younger kids? Did they have major side effects? Herx? Would just like to hear people's experiences as I find myself a mess about it. We've been dealing with PANS and LYME since he was 4 and we've done so well but a bite and EM rash at the end of the summer has put us right back here again... Thank you in advance.

Thank you so much for the replies. His ND ended up reducing his tincture to 25 drops twice a day from the original 40 drops twice a day and the ticcing stopped (thank goodness!) He is now on 6 drops twice daily of the Samento, Banderol and Houttuynia and he seems to be tolerating it. We are decreasing his ND's tincture as we titrate up. Sadly, we've come up with a new problem. His LLMD asked to run some bloodwork and so our family doctor here in Canada ordered it. Anyways, it came back with abnormally low neutrophils and a low white cell blood count. Has anyone experienced this? My family doctor has me in a panic because she is sending him to a specialist to investigate for Leukaemia. Also, since they are so low he is very susceptible to infection. ND is convinced it's Lyme doing this to his neutrophils and I have not had the LLMD weigh in yet. Anyone have any thoughts? I'm one worried mama

Hi All, It's been awhile since I last posted. Our 9 year old who started exhibiting PANS and Lyme symptoms when he was 4 years old has been doing really well. Seems though every couple of years we have a major flare up and last Friday he ended up with what looked like a mosquito bite but turned into a bullseye rash on Sunday evening. I spoke to his LLMD on Monday and they put him on Samento, Banderol and Houttuynia (1 drop twice a day increasing by 1 a day until 20 drops twice a day.) We have not gotten those yet as they needed to be shipped to us. In the meantime his ND but him on an herbal tincture of Cats Claw, Japanese Knotweed along with some others herbs, 40 drops twice a day. Anyways we titrated up and he seemed fine until we hit the 40 drops and now he has developed a mouth/tongue tic and blowing tic we have not seen since his major flare up with PANS when he was younger. He is also acting a little hyper and talking in strange voices. Could this be a herx? I have decreased his dose to 30 drops twice a day until I can talk to his ND after the weekend. I am am so sad and frustrated. I have some PTSD from when we dealt with the onset of his PANS/Lyme from 5 years back and this episode seems to have just brought that all back. What can I do to help his herxing? Does this sound like herxing? Also, anyone try the Samento, Banderol, Houttuynia for their children? I have heard the herbals are really strong, even at one drop per day and I'm afraid his body won't be able to handle it (along with my frayed nerves.) He was not put on any antibiotics for this bite as the LLMD and ND thought he might do better to tackle the Lyme with herbals. Is this the right call? I would appreciate any thoughts. I just find myself crying a lot these last few days. We have been so careful with him, using every precaution I can think of to protect from ticks but it seems he got a bite anyway. Thanks for listening and any advice offered.

We just travelled to NY last week and had a check up for my 8 year old PANS child who has been doing really well as of late. Unfortunately, since his visit he has developed a problem with urinary urgency/incontinence. The last 2 days he seems to be in a flare. He ended up with a fever last night and then wet the bed (he has never done this) and then he peed all over himself in public today (again never done this!). I felt so sad for him. He said all of a sudden he just really had to go and then it just happened. This latest flare started after his brother got a fever. At the same time, he went to the holistic dentist where he had a filling out in. I forgot to mention he also lost a baby tooth last night and I have noticed he always flares after dental work or anything to do with losing teeth. Does anyone notice the same thing? Do you know if this urinary urgency/incontinence is a tic? He has never had this before? Anyone who experienced uriniary incontinency with your child, did it just subside after the virus ran its course? He no longer has a fever but he still has a runny nose. Other than the urinary incontinence, he seems well. I don't know what do to, should I give him ibuprofen to see if it helps? Should I call his doctor right away and see if he needs medication to treat an infection or wait and see if his flare symptoms disappear after letting this bug run its course? Thanks in advance!

Hi everyone, my son needs work done in his mouth and I am wondering if anyone has tried filling teeth using biomimetic dentistry and air abrasion drilling? I don't know very much about it but I know that it is a more natural way of dealing with cavities. I have an appointment in a couple of days and I am quite nervous about it since I want to make sure that by fixing his teeth, I don't make his pans issues worse by introducing something that would irritate his immune system. Thanks in advance.

Hi, just to update we did a 16c of strep on Friday and noticed an immediate improvement. It lasted about 2 days and some of his behaviours came back. I would definitely say 5 days post LDI and he has improved slightly. Our ND wants to try the 16c again to see what happens, if we again notice an improvement. When you tried LDI, have you stayed with the same dose when noticing an improvement or do you move up? I'm still trying to figure out if the goal is to be able to take the highest dosage without reacting - then you know your immune system has stopped overreacting to the strep? Thanks again for all your feedback!

Hi All, Thank you so much for all the information! We started the strep 16c LDI today. I would be lying if I said I wasn't nervous. Could you please tell me for those of you who experienced a flare how long it took for you to notice that your child was flaring? Thanks in advance as I am one nervous mama!

Hi Nancyd, Thanks for sharing your experience. You said your daughter flared on the strep LDI. Was it bad and how long did the flare last? I won't lie, I am afraid to start something new in case of a bad flare especially since strep was never actually identified as a trigger in our case (it was coxsackie) We are supposed to start at 15c which we were told is a very low dose. Again, if you could let me know how bad the flares were and how you treated them and how long they lasted I would appreciate it. Thanks!!!

Thank you so much for your reply! Can you tell me how old your boys are? I am wondering if 7 is too young for LDA. I am glad to hear your boys are doing well! Can you tell me what kind of flare you experienced when you started the strep? My son seems to be in a flare right now, do you advise to start when they are flared up? I really am just hesitant to try something that might make him worse temporarily even though it seems like it would be very beneficial. Are there any protocols in place when you do the LDA with strep? I read somewhere that some people take an antibiotic in conjunction. So I guess I'm still a little confused but my understanding is that LDA's end result is to help the immune system stop overreacting to the trigger? Does it also kill the virus/bacteria? Thank you!!!

I just wanted to say that I think low dose immunotherapy is also referred to as LDI or LDA. He would be given the dose not through injection but sublingually. I would be grateful for any feedback. Thanks.

There is also Dr. Bock in Red Hook, NY.

Please help. Just wondering if anyone has tried lose dose immunotherapy for strep? Our ND wants to use in on my 7 year old son to see if this is part of the lingering problem. My son's original pans trigger was coxsackie and he was treated for that and then was told he was positive for Lyme but we have only used supplements to treat. He has been so good for the last 2 years but now something is off. We haven't done any blood testing as his medical doctor is in the States (we are in Canada) and we haven't been able to get out. Strep didn't seem to be a big issue then but now his ND wants to use the low dose immunotherapy as a diagnostic tool for strep, basically to treat/ rule it out as the trigger. Anyone have any thoughts? Really feeling sad and scared at this turn of events especially because we have been doing so well. Right now he has two tics, counting and hand flexing that he has recently developed. Thank you in advance.

My child (in the last month) has trouble leaving rooms without touching each side of the threshold BUT my most concerning issue right now is that he is counting everything. He then needs to tell me how high he has counted. It is almost like he cannot control this counting impulse.

Unfortunately, my son's tics have continued. I really am heartbroken. He is now having OCD where he is continuously counting things and then needs to tell me what number he is counted to. This happens so many times per day! I read somewhere recently that if I upped his supplements (which we were slightly lax on over the summer) that it could make things worse. Has anyone found that to be true in a flare? Would anyone suggest taking ibuprofen to see if it helps? We haven't done this in such a long time as I mentioned he was doing so well. Honestly I feel just so lost and would appreciate any feedback... By the way, his original trigger was coxsackie and then later we discovered lyme, no co-infections. He has been treated by an LLMD with supplements as we were hesitant to use antibiotics as he was doing so well. Thanks in advance.

Hi All, It's been awhile since I posted in here since my little guy with PANS has been doing so well. Other than mild flares after being sick he has been symptom free almost 2 years. Anyways, maybe 10 days ago I noticed that some of his "tics" had come back. And in the last 4 days, his major tic (itching/scratching) that sent us down this road, seems to have resurfaced. It is currently nothing compared to what it was but I am so stressed about it! I see it mainly at night when he is watching a video or when we are doing some schoolwork. Do you think I am just overreacting? This summer we have been somewhat relaxed with his diet and his supplements, could this be it? I am also due with my second child in 3 weeks and put off having another child until I knew my DS was better. This feels like a scary nightmare to me that it could be coming back...I have a new baby on the way and I have no idea what the trigger is. He hasn't been sick that I know of. I guess just feeling scared. Curious if anyone has had symptoms resurface after an extended period of time? Thanks for listening and for any advice you might be able to give.

Hello, Does anyone know if the chicken pox vaccine versus actually getting the chicken pox is safer for kids with PANS/PANDAS? Is it the safe for other childhood diseases as well? If anyone could shed light on the issue, I would appreciate it! Thank you.

Hello, I am wondering if anyone has had success with a particular supplement to help with OCD tendencies? How long did it take to see improvement? Thanks in advance!

I agree with rowingmom. We were told that if the parasite is using up those minerals, the only way a person will get better will be by strengthening the body and by replacing those minerals as the body desperately needs them to combat the infection.

Hi, Just wanted to update you all. Just spoke with our LLMD and he agrees that without symptoms (or minimal symptoms) we should not rock the boat, and continue on our current treatment without adding abx. He is giving us some anti-microbials like grapefruit seed extract and a few other things until our next appt at which point he will re-evaluate. We may run some more tests through Igenex. Thank you all again for your thoughts - I appreciate each and every one of you. I can't even begin to express my gratitude as to what a support you all and this forum have been to me!

Thank you all so much for your input. I have an appt tomorrow with our doctor and bring up the point that he seems to have virtually no symptoms (he does seem to have a minimal tongue tic today) I just am so scared that if I don't aggressively treat for it that I will be leaving it to bury itself deeper into his body but you all make such great points. I suppose what I will do is address his 23andme results first (which we just got) and see if we can get to another level of healing and take things one day at a time. I am just curious, do any of you who treated with antibiotics ever wish you had not and tried the herbal route first? I had read some articles by Dr. Klinghardt that before ever addressing Lyme we needed to address heavy metals, parasites and detox etc...first. Apparently he said doing this would speed up the time anyone would need to be on antibiotics. Any thoughts on that?

I never specifically treated for Lyme. He had coxsackie as the trigger and so we treated 30 days with Acyclovir that made a huge difference in June. After that, everything he couldn't tolerate he was able to. The next major turn around was when we started homeopathics to modulate his immune system. He did have a western blot done through Labcorp in April but it was negative. We just tested through Igenex this August as a precaution and were shocked that it came back positive. We haven't done anything other than supplements to address deficiencies and methylation.

Hi All! I am desperately looking for some advice. My sons Igenex test came back with 4 bands (34, 39, 41 and 93.) This past year he was diagnosed with PANS and just recently with Lyme (October). Problem is (or not problem) is that he is currently symptom free (or 97% better.) He has been doing really well for 5 months now (a terrible 10 months prior to that.) I have heard conflicting stories from the doctors we see, some say antibiotics to treat Lyme, others say herbs/isopathic remedies, others say treat, the others say wait. Can anyone weigh in on their own experiences? Can you have Lyme antibodies but have beaten Lyme? He has never been on antibiotics for it. Right now he is only on supplements and homeopathics which have turned things around for us. I am so confused as to what to do...especially with virtually no symptoms - granted he hasn't gotten sick (virus or bacterial infection) in awhile so I don't know how his body will react Any advice or input would be so appreciated.

tu4four, I had the same issue and apparently it had something to do with the information I was entering. I just figured it out on my own as I could not find the number to contact. The difference for me was that I was entering my childs birthday and then entered my own and it registered. Maybe the info has to be over the age of majority? At least that's what made the difference for me.