Stephanie2 Posted October 4, 2009 Report Share Posted October 4, 2009 I just posted this into a different thread (stomach flu). As I was typing it, I realized that maybe it would help someone who may be dealing with many of the same issues that my son used to have. I am copy/pasting that post into this new thread: We hired a DAN (Defeat Autism Now) doctor in March, this is similar to a naturopathic doctor, but ours is an actual MD. By the way, my son does not have autism, but is close at times. The MD first had us eliminate dairy and gluten. We then had the igg food sensitivity test done and he was also very sensitive to eggs, wheat, soy, etc... So we have eliminated all of this. Then I took it upon myself to do the feingold diet, which really helped. When we eliminated dairy, his allergies and severe croup/asthma went away completely! We have not used the nebulizer, steroids, etc... since Jan. Amazing! When we eliminated wheat, we noticed that his chronic hives drastically reduced and his daily stomach aches went away (however they come back during acute pandas). We also noticed his constipation reduced dramatically (later eliminated by very high dose and specific probiotics). With all this said, there is a chance that he has celiac (my 19 month old is also off wheat and many of his autistic-like characteristics disappeared), but we can't test for it unless we put him back on wheat. We also added many supplements which helped his immune system (you can see the list on my blog: http://thelight-stephanie.blogspot.com). We finally got the pandas dx recently and that has been our last battle to fight. My son's DAN really really wants me to fight it with Biocidin, a natural botanical broad-spectrum antimicrobial product. I tried and it did work at first, but then his symptoms came back (I believe that someone in the house is a carrier and I really believe it is me! we are all going to be cultured next week) so I caved and went to the antibiotics (which is now creating a yeast issue...ugh!). Stephanie Link to comment Share on other sites More sharing options...
Suzan Posted October 4, 2009 Report Share Posted October 4, 2009 I just posted this into a different thread (stomach flu). As I was typing it, I realized that maybe it would help someone who may be dealing with many of the same issues that my son used to have. I am copy/pasting that post into this new thread: We hired a DAN (Defeat Autism Now) doctor in March, this is similar to a naturopathic doctor, but ours is an actual MD. By the way, my son does not have autism, but is close at times. The MD first had us eliminate dairy and gluten. We then had the igg food sensitivity test done and he was also very sensitive to eggs, wheat, soy, etc... So we have eliminated all of this. Then I took it upon myself to do the feingold diet, which really helped. When we eliminated dairy, his allergies and severe croup/asthma went away completely! We have not used the nebulizer, steroids, etc... since Jan. Amazing! When we eliminated wheat, we noticed that his chronic hives drastically reduced and his daily stomach aches went away (however they come back during acute pandas). We also noticed his constipation reduced dramatically (later eliminated by very high dose and specific probiotics). With all this said, there is a chance that he has celiac (my 19 month old is also off wheat and many of his autistic-like characteristics disappeared), but we can't test for it unless we put him back on wheat. We also added many supplements which helped his immune system (you can see the list on my blog: http://thelight-stephanie.blogspot.com). We finally got the pandas dx recently and that has been our last battle to fight. My son's DAN really really wants me to fight it with Biocidin, a natural botanical broad-spectrum antimicrobial product. I tried and it did work at first, but then his symptoms came back (I believe that someone in the house is a carrier and I really believe it is me! we are all going to be cultured next week) so I caved and went to the antibiotics (which is now creating a yeast issue...ugh!). Stephanie This sounds very much like us as well. We see a Dan! doc and are gluten free. Going gluten free helped us tremendously. My 6 yr old had many similar conditions you would find in a child with autism. Both my girls test positive for gluten intolerance but they have lowish IgA and we think that may be messing with their celiac panel results. Even with all the supplements and diet changes we have made, going on the antibiotics was the thing my dd6 needed to get over the hump with her PANDAS. Susan Link to comment Share on other sites More sharing options...
KeithandElizabeth Posted October 4, 2009 Report Share Posted October 4, 2009 Thanks for sharing all of this information with us. Can you tell me more about Biocidin? I looked at your blog and what adorable children you have! I believe you mentioned, either on your blog or on this web site, that your son had intense laughing that you thought was yeast related? I am curious because my son has been displaying the constant intense laughing behavior and I am torn about whether it is PANDAS related or yeast related? Thanks, Elizabeth Link to comment Share on other sites More sharing options...
Stephanie2 Posted October 4, 2009 Author Report Share Posted October 4, 2009 Thanks for the compliment about the kiddos! Biocidin is available only through a doctor (usually an alternative med type doctor). You can google it...I think it is called Advanced Biocidin. It is supposed to be antiviral, antibacterial and antifungal. Yes, my son gets very silly (uncontrollable laughing) and hyper with yeast. He also wets the bed, wakes up at night and likes to jump all over the couch. They are different from strep which is: ocd, tics, rage and just plain angry at the world. It is so hard to find the right balance (killing strep without increasing yeast). There must be a way but we haven't found it quite yet! Stephanie Thanks for sharing all of this information with us. Can you tell me more about Biocidin? I looked at your blog and what adorable children you have! I believe you mentioned, either on your blog or on this web site, that your son had intense laughing that you thought was yeast related? I am curious because my son has been displaying the constant intense laughing behavior and I am torn about whether it is PANDAS related or yeast related? Thanks, Elizabeth Link to comment Share on other sites More sharing options...
Kayanne Posted October 4, 2009 Report Share Posted October 4, 2009 Do you think a DAN doctor would be practical to use instead of a normal pediatric practice?--ya know for all those quick, "I gotta run dd to the doctors because..." Or are they more like specialists who have waiting lists, and do a lot of consulting? I am considering switching ped. practices, and I would just like an MD or DO who seems to think a little more critically. I'm really getting sick of being fed the "taking points" from all the offical organizations. I was at the peds office two weeks ago for my oldest girl, and I had all four of my kids with me...the doctor was appalled that I didn't want to do the flu shots on all of my kids right then--I was not about to blindside them like that. In the past, I always felt so confident refusing the flu shot because my kids were always so healthy...now I'm not so sure. I've never been anti-vaccine, but I think there is mounting evidence that there are definately some children who should not recieve them, and it seems that the established medical community are really digging in their heels on this one. I came across a website that claimed to have the "leaked" H1N1 vaccine package insert, and in it it said that it has not been safety tested on children under 4. my son is almost 2...and this doctor was saying that I was risking my children's lives if I didn't give my kids the H1N1 shot. I've just gotten angrier and angrier about this! If I had had my wits about me, I would have told her that maybe there wouldn't be so many deaths from secondary infections, if doctors weren't so reluctant to prescribe antbiotics!!! sorry guys...did an edit to tone it down Link to comment Share on other sites More sharing options...
ajcire Posted October 4, 2009 Report Share Posted October 4, 2009 I don't know anything at all about Dan doctors but when I was searching for a dr. to help me with pandas I came across one who advertised as a whole child center... more wholistic approach. Specifically says on their website that they believe in looking at each child as an individual when it comes to vaccines, doesn't believe in more than one vaccine at at time.... all that stuff... it is a regular ped. office but more open minded doctors. I now have gone back to my traditional ped office because of location issues and finding one dr. in my regular practice who believes in pandas... just throwing it out there as a practice you might be interested in looking for. Link to comment Share on other sites More sharing options...
smartyjones Posted October 4, 2009 Report Share Posted October 4, 2009 I took this directly from the CDC website - On June 11, 2009, the World Health Organization (WHO) signaled that a global pandemic of novel influenza A (H1N1) was underway by raising the worldwide pandemic alert level to Phase 6. This action was a reflection of the spread of the new H1N1 virus, not the severity of illness caused by the virus. I tend to be one to search for homeopathic remedies even before PANDAS. My parents are medical and I've gotten their skepticsm that medicine is really just a lot of educated people doing the best they can with their science and their opinions - but I don't have their medical education (a dangerous combination). My kids have been fully vaccinated - I now regret we used the APA schedule - in hindsight I would have done something like the Dr. Bock schedule. My kids did not go to daycare as infants/toddlers - they could have gotten some vaccs later. I don't feel there are no risks for the vaccine, esp with a kid who's immune system is screwy. But would they be better off with it b/c their immune system is screwy? It's a tough question and no one seems to have a good answer. I have yet to be able to find a good, non-death hyped recommendation to vaccinate for H1N1. Is it really to prevent serious complications, is it for society as a whole as herd immunization theory, is it to curb the loss of work, school, quality of life? ~Kathy Link to comment Share on other sites More sharing options...
Stephanie2 Posted October 4, 2009 Author Report Share Posted October 4, 2009 I have yet to be able to find a good, non-death hyped recommendation to vaccinate for H1N1. Is it really to prevent serious complications, is it for society as a whole as herd immunization theory, is it to curb the loss of work, school, quality of life? ~Kathy Don't forget the bottom line...the drug companies stand to make a lot of $$$ with each new vaccine they develop. Stephanie Link to comment Share on other sites More sharing options...
Stephanie2 Posted October 4, 2009 Author Report Share Posted October 4, 2009 It depends which DAN doctor you choose (or have near you). The ones near us don't do full pediatrics. I bounce between the ped and the DAN. A little inconvenient, but the best of both worlds... For example, when my kids are put on an antibiotic by the ped, I call the DAN and he prescribes diflucan to prevent yeast from building up form the antibiotic. I have found that the DAN has solved so many of our problems that I rarely see the ped anymore (we used to be in there at least once a week, sometimes twice). Stephanie Do you think a DAN doctor would be practical to use instead of a normal pediatric practice?--ya know for all those quick, "I gotta run dd to the doctors because..." Or are they more like specialists who have waiting lists, and do a lot of consulting? Link to comment Share on other sites More sharing options...
smartyjones Posted October 4, 2009 Report Share Posted October 4, 2009 oh yeah - totally - the $. I was upset when the gardisil came out and it was the manufacturer that was lobbying Congress to make it mandatory. Regardless of any reality of the benefits/risks - the manufacturer who stands to make $ should never be involved in public health decisions! I would feel much better about H1N1 vaccine if it didn't have that $ component. I do like our capitalistic society but it does muddy waters with public health. Not sure how old everyone is - do you remember the Friends episode when Phoebe tried to find a fully altruistic act? She couldn't do it in just everyday life so it's even harder if you include govt and $. Link to comment Share on other sites More sharing options...
dcmom Posted October 4, 2009 Report Share Posted October 4, 2009 Kayanne- are you near Stockton, NJ. There is a DAN/ family practice there Dr Freedenfeld. I believe you could use him as your regular ped. I think most DANs will be very conservative with vaccines.... I feel the same way with our regular docs. I will be taking the kids to their yearly physical next week, 3 months late, and am going to have a hard time listening to their advice. The practice I go to, unfortunately, is like a factory- kids are in and out, and no thought is put in. I will not have them vaccinated- it will not even be a discussion. I hate to even bother with this appt, but I need that school form filled out.... Link to comment Share on other sites More sharing options...
smartyjones Posted October 5, 2009 Report Share Posted October 5, 2009 Are any of your DAN appts covered by insurance? Link to comment Share on other sites More sharing options...
Suzan Posted October 5, 2009 Report Share Posted October 5, 2009 Are any of your DAN appts covered by insurance? Our Dan! doc is our regular peditrician and is covered by insurance like any other doc would be. Susan Link to comment Share on other sites More sharing options...
Stephanie2 Posted October 6, 2009 Author Report Share Posted October 6, 2009 My DAN doctor is considered "out of network". They fill out the paperwork for the insurance, but we have to submit it and wait to be reimbursed. Some of the labwork is reimbursed but some is not. It is not cheap...we have both of our boys doing the DAN protocol. but I will say that given the results we have seen, we would mortgage the house/go into debt if we had to. It has brought a lot of resolution to many health problems that mainstream medicine says that there is no cure. Maybe in the end we are saving money b/c we don't have as many chronic conditions in our house anymore. Stephanie Are any of your DAN appts covered by insurance? Our Dan! doc is our regular peditrician and is covered by insurance like any other doc would be. Susan Link to comment Share on other sites More sharing options...
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