cobygurl

Can someone please tell me how to download all the raw data in 23andme.... I seem to be missing something! Also, I suppose you can't tell all the gene issues until you run it into something like the geneticgenie? Thx!

Wondering what delivery method have people found to work best for B12 and what brands? Right now, we have a nasal spray but I don't think I can even get near my DS5 with it, let alone injections! Thanks in advance!

Thank you so much for all your responses! I am curious, if I were to leave it for now as DS seems to be doing great and we are simply ramping up his supplments (the idea was to strengthen his body and detox BEFORE abx) what happens if he needs an antibiotic for something else? It seems that my DAN doctor thinks that the reason the lyme "woke up" is because we treated DS last year for a tooth abcess with his first ever course of abx - he was on it for 10 days (amoxicillin and metrodinozole (sp?). After that, all his PANS symptoms started. In hindsight after realizing he has lyme just in the last 10 days, it must have been lyme all along and the antibiotic woke it up as he only took it for 10 days. Just wondering if you would all start the herbs slowly and start treating for lyme anyways? I mean, what if he ever needs an antibiotic for something else? We would be in the same place again. Does that make any sense? It seems to in my head, LOL or I might just be overthinking this. Also S&S, could you tell me where I could find a copy of the condensed cowden protocol for children. Thank you all!

Help...I think I may be dealing with the chicken pox (maybe)? I am seeing flat, red spots on DS 5 back. Only a few on the shoulder blade, lower back and side but I do think it's funny that they are in different places versus in one area. Does that sound like the start of chicken pox? How did your children react? Did they have exacerbations? TIA!

Hi, Has anyone tried the condensed Cowden Protocol for Lyme? Did it help you or your children? We are looking into it versus antibiotic therapy or in addition to antibiotic therapy. Tests came back positive for Lyme but we have no symptoms of Lyme or PANS right now. We have been doing great with homeopathics and supplements. We are now waiting on 23andme results and were wondering if antibiotics would be the right thing at this point - especially if he is doing so well. We have read that many people have the Lyme antibodies but only in a comprised state would it become active and that it may never be an issue. Obviously, we want the Lyme gone, we're just trying to figure out our next steps and don't want to rush into anything especially since I've heard that antibiotics can make the Lyme MORE resistant and harder to eradicate. Any advice would be appreciated.

Hi, Unfortunately after taking the IGenex Lyme test DS 5 is positive for Lyme (bands 41, 34, 39 and 94.) I am feeling so overwhelmed and sad right now. He has been doing much better with some minor ticcing after taking Acyclovir for Coxsackie but the day to day grind of being afraid that he will get sick etc...is starting to get to me and now he apparently has LYME on top of PANS. Has anyone had their children on Ceftin for Lyme? Most likely DS has had it since he was 2 and we found a tic on his head - at the time didn't think anything of it. He seems to be doing so much better now, and the doc says I can wait a little bit before treating with antibiotics but he needs to be treated. I have heard sometimes that once you start treating, things just get worse. Apparently he will need to be on it for 4-6 weeks. Any input would be appreciated. Thank you!

I am going too!

Sorry to hijack the post but a was wanting to know Rowingmom, how much curcumin does your daughter take? Over here, we haven't had constant talking but we did have CONSTANT singing and LOUD talking, that went away once he started taking an anti-viral. We still do have stuttering...we are wondering whether that's developmental (he is 5) or is a tic. I've heard it can be tic related.

Broo100, could you tell me what a strep kit is and where do you get one? Do you then deliver it to the doctor?

Hi Nitshel, I was just reading this post and saw you asked about supplements we were using for detox back at the beginning of the summer. So sorry I'm only answering now it I just saw your question! Right now we take vit c, zinc, probiotic (theralac we just added), fish oil we just added, Epsom salt baths, lots of coconut oil as an antiviral and olive leaf extract a few times a week. We also did a third round of Acyclovir for the coxsackie, and my child got 85-90% better. It's important to note too that prior to the acyclovir our son could hardly tolerate any of the supplements above. He was also on a severely restricted diet as it seemed everything made him worse. Acyclovir for us was a turning point... Also, one of the main things we did at the time after the last round of acyclovir and in our opinion, eliminated a tic he had had for almost 10 months, is that on the advice of our dan doctor we started rotating homeopathic remedies (pleo remedies) to help modulate his immune system and it has helped to get us up to 95% better or more. He just had a fever though so we are dealing with some minor tics from that but it is minimal. He also exhibited no OCD this time when he fell ill which was amazing for us as his anger and OCD get ramped up when he does get sick. If you want more information on the pleo remedies, PM me and I can tell you more about what DS is taking, I'm happy to share. I should mention we are also going to be adding in a bovine colostrum to help with the immune balancing as well. As far as Lyme we are have not had to deal with it but I was told that the pleo remedies are very helpful too in combatting lyme.

Dr. T has helped us tremendously. He was the one who prescribed the medication that turned things around for my son but as someone posted earlier, we have had some communication i. e not getting my message through (email etc...). There have been a few times that I have been patched through to speak with him as I have had a question and didn't get through via email, but mainly our experience is that we need to book another appt/consult to have our questions answered. That being said, he was the one who ran the tests we needed to figure out what was going on with our child, is very knowledgeable and you can get an initial appt quickly, which we desperately needed at the time.

Anyone know who does this test?

3bmom, my son showed a huge improvement on Acyclovir. He took it for 30 days. After 30 days he was 90% better with a little residue left over. 8 weeks later, he is in another flare. How long did you take the acyclovir for? Did you feel like it got rid of ALL his symptoms or did you have to do other things?

Our doctor told us that in children who have neuro-immune issues, vaccine benefits DO NOT outweigh the risks, so we aren't doing any shots. We were told, like many other parents on this thread, that we could protect him using supplements etc...

Hi All, Thank you so much for all your answers. Sometimes I feel like I am always asking the same questions but my heart sinks everytime I see him tic and I guess I just need reassurance that this is fact can get better. Rowingmom could you PM me too about the sauna. I'd be interested in learning more about it as well. For detox I have been using a lot of vitamin C (more than 1000mg) zinc and Epsom salt baths. Should I be doing more if it doesn't seen to settle the tics? LLM could you tell me a little about molybdenum. It was prescribed but I don't quite understand what it would be for? Detox? Also, lastly, maybe too much into but my little guy has been saying his bum is itchy the last few days - this is new. Is that Candida? Thank you all again!

I use regular Epsom salt baths and it seems to relax his legs...I was just recently given magnesium cream to try as well.

Hi, I was hoping someone could share your experiences. After your child has a fever, do they always develop new tics? I am 9 days post fever and my child now has a whole bunch of new tics he didn't have prior to the fever, plus some we haven't seen in a long time. I am sick about it since we were doing so well. Prior to fever, he cleared the coxsackie that apparently set off his pans. Does that mean he has a new illness he hasn't been able to get rid of? Do the same tics equate with the same virus attacking again? We did a throat swab since he was complaining about a terrible sore throat but it was apparently negative or they would have called within 24 hours. I know some of you have said that you always noticed an exacerbation after fever - how long did it take for it to settle? Do you just continue with your supplements and meds they are on or do you automatically get bloodwork drawn to see if anything has changed? I have been trying to get some of the doctors we work with to respond but haven't heard anything yet. Are your doctors responsive once your child gets sick or do you find you have to wait a few weeks to hear anything or get an appt? Thanks!

Good luck. Saying a prayer for you!

Our ND/DAN doctor gave us Pleo Form, a homeopathic remedy that is to act like Advil and help with inflammation. Advil does wonders for us. We have not tried it yet (FORM) as we are using some other pleo remedies as immune modulators o start but will be adding the FORM in at some point soon. Maybe someone else on the forum might have tried this Pleo remedy for inflammation but it was suggested to us since he hoped it would have the same effect as Advil.

Hi RowingMom, How long did the after fever exacerbations last. Did she ever retain certain tics or is they all go away? I did notice as the day progressed his shoulder tic got better but I was so freaked out that I have him both coconut oil and olive leaf extract - a lot of it - to help him fight off whatever he has. Took him to the doctor for a swab. They did it but said his throat didn't look like strep and it was most likely viral. Curious is there anything you are giving DD, in your opinion, that helped to modulate and balance her immune system?

My DS5 also has that problem. Worse during a flare. Our doctors have told us that those dark circles are signs of allergies. Something we have been giving him/exposed to that his body can't handle.

Hi, My son was just prescribed immunolox spray (bovine colostrum I believe) to help modulate his immune system. Has anyone else tried this? What were your results? Also, any success with nasal spray B12? Thanks!

Help. This is 2 post fever and sore throat. He had a fever and sore throat Sunday night and today is Tuesday morning. He woke up yesterday and was fine. Sore throat was gone, fever gone. Only thing left is a stuffy nose. Anyways, today he wakes up with a really bad shoulder rolling tic - like adjusting his clothes. He says his shirt is falling off and he needs to fix it. I have no idea what to do. Give him ibuprofen to start reducing inflammation, get him a throat swab (could it be strep if his sore throat is gone in less than 24 hours?). I can't believe it, such a good 8 weeks and now it seems like we're going downhill again. I was starting to feel "normal" I just want to cry. Thanks for letting me vent.

Thanks for the advice. I was feeling so upset yesterday just because I was feeling so hopeful. We'd had several good weeks and then minor ticcing starts and then fever. We were in the NorthEast visiting Dr. Bock for a consult and so maybe it was Coxsackie (Coxsackie according to Dr. T was responsible for DS problems.) Anyhow, his fever broke early this morning and I will continue to watch him. Would you still give him ibuprofen if the fever is gone and he is showing no signs yet of rage or major ticcing (just to head off the inflammation?) If so, how long? Can anyone explain why these children get over the fever but then get worse, I just don't quite understand. Thanks again, don't know what I'd do without this forum!

Please help...my 5 year son was complaining of a very sore throat today and now has just come down with a fever of 38. He has been so good lately with a 95% improvement after 3 refills of Acyclovir and I am now terrified and feel paralyzed and don't know what to do. I am fearful that all his tics and OCD will come back. In the past, we have given him ibuprofen for rage which makes it go away but he has not had a fever for so long. Do we let his body try to take care of the infection, or do we do the ibuprofen? Any thoughts are appreciated. Honestly just feeling scared and wondering if this is the calm before the storm as some parents have said that their child getting major exacerbations after fever.