Sylvia

I know, me too, I have read Josh's story several times before, but re-read again tonight, and it just tears me up. Even being the mother of two kids with similar stories, just not as severe, Josh really stays in my mind and in my heart. Emerson, I know you are really going to make a difference in the world. You have such an incredible mind and the heart to go with it! Oh. My. God. The tears will not stop coming. That was one of the saddest things that I've ever read, right up there with Jamie Forschner for me. I am so grateful for the health that I do have, & stories like that remind me to count my blessings. God bless doctors like Dr. Kovacevic, Boubolis, Nicolaides, Burrascano, Charles Ray Jones, & everyone else risking it just to fight for us. I swear to you I wrote "our kids" on the first try. Sometimes it's a bit difficult not to feel like a Mom, too. Thank you for sharing that. <3 The only reason that I have yet to write down my experiences with my health (whatever it all is that is at play here) & the world of medicine is because my story has no end. I didn't want to start writing until I could give it a happy ending; me being treated. Me feeling better. Me helping other kids to do the same. But after reading that I think that I'm going to. Granted, there's nothing I can say that could even possibly compare to what Josh & his mother have been through, but I feel like we owe it to brave people like him & his Mom for raising awareness & not being afraid to share their stories. I want to be one of those people. I've talked about it on the forum before, but I'm going to make a difference in the world of P.A.N.D.A.S. (& maybe Lyme too) & that story was the final motivation that I needed. The privatized business that is the vast majority of the medical field needs to be exposed for what it really is; politics & money. People need to be reminded that doctors are meant to HEAL, not charge & treat.. I can't sit by quietly with the thought that I could possibly contribute to help kids all across the spectrum; from myself, to Josh, to every single other misunderstood, afflicted child on this forum & beyond. It's about time we were heard.

That is great to actually have doctors not look at you like you have two heads, isn't it? And to treat you like you have valuable information that can help them do their jobs! Way to go, score one for our side!

Not producing antibodies to one of the MMR components, usually measles, despite having all of the shots, comes up a lot in my crowd. If he has had all the required doses and still tests negative, his body is not able to mount the proper response, and further vaccines may not help. And MMR is one of the biggies as far as adverse events. In order of what I usually see problems are: MMR, DTaP, Hep B, and Flu. There is good reason to want to split up the MMR components, but because parents were wanting seperate shots, the manufacturer actually STOPED producing the seperate ones! Many feel that if it was shown that giving them seperately was safer, then that would give more proof to those who say they have been injured by MMR. Measles is a serious disease. If my kids were not already vaccine injured, I would give the separated measles vaccine. But if my choice was the MMR or no vaccine, I would not do the MMR. It is just too dangerous (and ofcourse, I know so many of its victims personally). It is hard to shake the image of what it has done to so many kids. Here is one more link. It is important to read if you get the chance, not just because of the fact that this young man (Josh) was injured as a toddler by the MMR - what is really shocking is how he and his family was treated after: http://www.ageofautism.com/2010/04/i-am-josh-a-boy-after-his-mmr.html I can never forget about him, his story is sunk into my brain forever. Yes, it is an outrage how medicine is really controlled by only a small group of people, and how what is allowable to be treated and what is not, is dictated down the chain of command. Lyme doctors are well known in my autism groups as heros! When you think about how long and how much money and sweat and tears goes into being a doctor, it takes a lot of guts and heart to stick your neck out for the well being of your patients. Most doctors would and do not do it. So those that do are really special people because they risk a lot! I am so glad to hear that your son is doing better! Thanks for the links too. I will read them. This is really an outrage. The conflict of interest is very similar to the conflict that the Infectious Disease Society of America (IDSA) has with lyme. Some panel members testify on behalf of insurance companies in denying claims for medical treatment for lyme. Others have financial conflicts of interest with the old definition of lyme (tests, failed vaccine, etc.). This should disqualify them from being on the panel that decides what the guidelines for diagnosis and treatment are. I am very concerned about the hostility in the medical community regarding differences of opinion whether it be about vaccinations or about lyme. Many doctors take it personally if they think a patient should not be treated for lyme. The arrogance is shocking. BTW my son was tested for antibodies to either measles or mumps by dr jones and he doesn't have any of one of them (can't remember which). Dr Jones told me to get the vaccination but I have put it off. My son had all the MMR vaccines but it looks like they didn't work. My holistic MD said I should get the missing vaccine as a single shot as long as it is mercury free. My son is not sick (was treated for lyme over a year ago and was never that sick). What do you think about this?

All week? That is really outrageous! I am so sorry! Maybe if enough parents complain they may change policy. All vaccines have side effects that include the possibility of death. Not something the schools should be hawking. All week!!! I am so frustrated!

I know your son is not on the autism spectrum, but there are several groups of parents that are really good at obtaining fair treatment from insurance companies that may be able to give you some tips. The one that pops into my head first is: http://www.insurancehelpforautism.com/index.html Someone there may be able to help, and show you how to speed up the process. That site deals mostly with ABA and speech therapy denials, but I think they may be able to help in getting other therapies through the appeals process. There are also some good links in the links section. I am so sorry this is happening, and how this is affecting your son. No child should have to go through this.

Me too! That one quote sums everything up perfectly! I love Barbara, and am a proud member of the NVIC!

That is just heartbreaking. Especially when this girl says she is afraid to go asleep because she fears she will never wake up!

Excellent point Vickie. And what really, REALLY scares me is the push to close all vaccine exemption laws. There are various bills popping up in many states to do this, and already two states (West Virginia and Mississippi) don't have either Religious or Philosophical exemptions for their citizens. They only have a medical exemption law, which is almost impossible to get because doctors who write these face big harrassment and threats from their medical boards and the Public Health boards. Can you imagine the day when a strep vaccine is introduced, and you are told that your child MUST have it or can't attend school? And oh by the way, along with the strep vaccine, your child has to be "caught up" on 30 or 40 other vaccines as well! And there is even talk to close the "loophole" for kids that are homeschooled, so they will have to be vaccinated by force as well. These are very real threats. Our rights are very fragile as it is, and the AMA has stated the the repeal of exemption laws are a top goal for them. Maybe some of you think I am an alarmist, but I wish that were the case. Public Health and BigPharma has big muscle to get their way, and the majority of the public buys into it. As we speak, health care workers are being forced against their will to get the flu vaccine, or to lose their jobs. Even workers that don't have contact with patients. Who is next? That is the very definition of Human Rights Violation, to be blackmailed, bullied and coereced into being injected with biologicals against your will - and not too many people seem to care. This does not bode well for the rights of our children.

Thanks lyme mom, he is doing fairly OK right now. He had a big setback the last few years with rages, mania, tics, and OCD. Nothing ever came up on testing, including the initial Igenex screen, so our DAN started him on high dose Amoxicillin and Ketoconazole to see if that might help. And it did! He made about a 75% improvement, so now we are full steam ahead and have recently started Augmentin. He still has major mania with rages if he has a food infraction, but overall he is doing a lot better lately. We are cautious, but hopeful. And you are definitely right about the small group of people that make vaccine decisions for the entire country. They all have massive conflicts of interests, with Paul Offit being the number one spokesmodel: http://www.ageofautism.com/2009/02/voting-himself-rich-cdc-vaccine-adviser-made-29-million-or-more-after-using-role-to-create-market.html The former head of the CDC, who promoted vaccines and denied the link to autism during most of the 2000's in now a big wig at Merck, in their (drum roll please) Vaccine Division! Oh, payback pays SO well! http://adventuresinautism.blogspot.com/2009/12/julie-gerberding-named-head-of-merck.html

Oh I totally see where you are coming from. I am definitely biased for several reasons though. I have two boys with autism and either PANDAS or lyme as well. They both had bad reactions from their vaccines, which I was always told was normal. I don't spend a lot of time thinking what could have been done differently, but if the majority of doctors didn't think of vaccines as Holy Water, then maybe my boys doctors would have taken my concerns seriousely, and maybe they could have been spared some suffering and less damage to their bodies and immune system. But nope, when I got their medical records I saw that my concerns were noted, and dismissed. Or in doctor speak: "Mom was reassured". That's the terminology they like to use "reassured". If I had access to a medical library back in those days, I would have found that my youngest son met the criteria exactly for encephalopathy after each round of shots. The term to describe a baby's high pitched scream while violently arching his back is "encephalitic cry". He must have suffered excruciating pain. Since then, I have become very active in the world of autism. I am a parent mentor for two national autism orgs, one local, and I also run my own support group that has over 200 members. I am also on two statewide committees. So I in contact with hundreds of autism parents. I cannot tell you the number of new parents I have had sitting at my dinning room table telling me about their childs regression after their shots. As a matter of fact, it was the last mother that almost sent me over the edge. She sat there with so much emotion telling me about her beautiful little boy and how sick he got from his vaccines, how his doctor blew off her concerns, and how he decended into a silent world of his own. And it really hit home - I have been hearing this exact story for 10 years - over and over and over again. For God's sake, when will it stop? When will doctors stop dismissing that this is REALLY happening? How many more babies will have their lives, futures and health devestated? How much more pain and suffering will families have to endure? It used to be we, as a society, used vaccines judiciously. Now it is a free-for-all. The more the better. We have a one size fits all vaccine program without regard to the individuals heatlh needs. And there are more vaccine mandates on the way. Vaccines are big business. They are marketed now like soda pop. They make you think if you contract a disease you will drop dead immediately. But the loophole is that all of these vaccines make us weaker. A significant subset of children I come in contact with have documented immune disorder, that the parents trace to their regression from vaccination. So they are at risk from disease, but cannot ever risk another vaccine reaction. So I apologize to everyone for going on and on about vaccines, but it is a very big subject for me. I know of one girl in my school district who supposedly got seizures from the vaccine, but my aunt died from cancer so when it comes down to cancer or seizures (which I arguably already deal with), the choice is obvious to me. I won't even try to act like I'm knowledgeable about vaccination though. All I know is that I see how NOT getting vaccinated has effected my immediate family, & that's all I really needed. Seven kids & two parents all coming down with The Whooping Cough (& as I said, God only knows what else...) multiple times is just not okay. I really want to learn more about Autism. A lot of the kids that I work with, like my brother, are Autistic. I wish that I knew more about it. My brother is the lowest functioning verbal Autistic boy I think that I've ever come across & it makes me so sad. I want to understand. Oh, I totally respect her for taking a stand for her child!! It's nothing having to do with that. I only WISH that we had a celebrity face to paste on P.A.N.D.A.S. & Lyme so that we might get recognition like that. I think that what she's doing is great & if I were in her position I can't imagine doing anything else, but I lost my respect for her the day that I heard her advocating Botox. Injections meant to prevent potentially lifethreatening infections are bad, but injections of botulism meant to prevent less-than-lifethreatening wrinkles are good? Like I said, I don't know as much as I would like to about Autism but I feel like ALL of the furor over the vaccinations is drawing away from researching Autism itself. In my head it's like us worrying about strep more than actual P.A.N.D.A.S. Does that make sense?

oops, I forgot to add that IVIG was one of the very first "alternative" treatments I considered. I took my oldest to Dr. Sudhir Gupta at UC Irvine in 1999, but based on basic immune panel testing, he didn't recommend it at that time. So then I moved on to the other stuff. But jeez, 11 years ago I wanted to do this!!!! I am trying not to dwell on 'what ifs" right now!!

Yup, we have been doing DAN protocol therapies for over ten years; diet, supplements, anti-fungals, HBOT, etc. But it has only been since early this summer that we have seriousely considered PANDAS and started long-term antibiotics. Antibiotics is kind of taboo in autism biomed land, so it has really been hard to embrace, but I have seen some really promising changes in my youngest, so now I am very excited. With all of the DAN protocol stuff we have done, there has always been ups and downs. My youngest especially would be doing fairly well, then everything crashes. I just wish I had given this more attention many years ago! But when you have autism, all issues and behaviors always get attributed to that, instead of looking at other issues such as PANDAS or lyme. Very frustrating, but this new avenue is also very exciting!

OMG, I will really worry about you getting the Gardasil shot! I will hope for the best for you. Our doctor that is helping treat for PANDAS has treated several Gardasil victims with Hyperbaric Oxygen Therapy (HBOT). Personally, I don't think autism is only triggered by vaccines, I think there are many things in the environment that can trigger the chain of effects that lead to the brain being injured. When the brain is injured at certain ages in infancy, it can manifest in autistic symptoms. And I LOVE Jenny. I have been around way before she came along. Donated money, wrote politicians and the media, but it wasn't untill Jenny went on Oprah that this issue got any decent press. She has been the object of some pretty nasty comments for speaking out. But that lady has guts, and she doesn't back down. So a lot of us moms love her for that. She has said that she made a deal with God, that if He helped get Evan better, she would spread the word that it is possible to get better from a disorder that has always been considered hopeless. And guess what? She kept her word. After Evan made such an amazing recovery from severe autism, she could have gone back to her celebrity lifestyle. But she has stuck around and been a very strong voice for our community. To let the world know that a lot of our kids have been hurt by their vaccines, and we need to look for ways to make them safer. That makes her dangerous to the medical mainstream, and they have attacked just about everything about her. I think she is FABULOUS!

Getting a disease will usually give you immunity for life, but not so with a vaccination. That is why they have so many boosters. For example, the DTaP vaccine is given 4 times in the first year - they started with just one, but that didn't protect, so they added another, and another. A baby born today will get 36 vaccines before the age of 18 months, including a vaccine for a sexually transmitted disease, hepatitis B within hours of birth even though they have no risk factors for this disease. To top it off, the vaccine wears off on average in 5 to 7 years, long before they could possibly engage in risk factors. My son suffered encephalopathy at 9 months from his 3rd Hep B shot. He is now 12, cannot speak, and is no longer immune from Hepatitis B. So there are a lot of risks to the immune system from some vaccines with no possible benefit. And exactly HOW the immune system is stimulalted is a huge issue with vaccinations. Adjuvants of aluminum, and the most scarey of all: oil. A good book that describes the mechinism of action of oil based adjuvants is: VACCINE A http://www.vaccine-a.com/ I would urge everyone with a compromised immune system to be especially careful with oil based adjuvant vaccines. This is a disaster waiting to happen. We really can't keep tricking our immune system so many times and expect to get away with it. Autoimmune disease/dysfuntion are the new plagues.

I agree, and they are pushing them on pregnant women as well, although they have no safety studies to back them up. My doctor is totally against all flu shots. He says that ten years of flu shots will triple your chances of getting alzheimers b/c of the mercury in the shots. We won't be getting any flu shots but we will be making sure that our d levels are good. I also have herbs from my acupuncturist that I use at the first sign of a problem. He also sells a tea that you take up to three times a day when you start to feel sick. The kids love it. Between the d and the herbs we did very well last winter even with the lyme. Its an outrage that they are pushing these shots on children.

Age of onset, which criteria my kids did not meet, is the main reason I haven't seriousely pursued PANDAS info/treatment untill now. Both of my kids reacted to their vaccinations - my youngest one especially was text book adverse reaction: fever, projectile vomiting, explosive diarrhea, arched back with high pitched scream (encephalatic cry), etc. They both developed symptoms of autism, but my youngest especially has always had symptoms more consistent with a PANDAS type of diagnosis, such as mania, obsessions, dangerous and bizarre behavior, ADHD, tics, and in the last 3 years, rages of violence. He has been 75% improved since starting long-term antibiotic therapy this summer. Still full syndrome autism and non-verbal, but mostly calm, cool and collected. The rages, hysteria, tics, strange motor movements and other PANDAS symptoms are much, much better. He is 12. I wish we would have considered this years ago, but since they both showed symptoms so early, I dismissed it.

I agree, vaccinations, especially those with mercury, play havoc with the immune system. An immune system gone haywire (autoimmune) is thought to be the reason behind PANDAS, so I would think other members of the family would be at risk for immune dysfunction as well. I have plenty of Vitamin D3, Elderberry and antioxidants such vitamins E and C on hand during flu season, and we always do fine. For us, I would not risk another vaccination for either child. And yes, the Flu Mist does indeed shed. The package insert said that a person who takes it should avoid immunocompromised people for 3 weeks. OYE!

Yeah, other people can be supportive and sympathize, but unless you are living it, you can't possibly relate. Sometimes when I am out in public I will overhear a parent complaining about their kid, and it is such a petty complaint. It just makes me want to shake them and say you have no idea how lucky you are!!! It's like they live on another planet because our lives are SO different. I am over the moon happy for the most mundane things that those other parents just take for granted everyday.

Kathy is an autism mom and one of the founders of LIA, Lyme Induced Autism: http://www.lymeinducedautism.com/lymeautismconnection/thinktankoverview.html

Oh BOY do I relate! I still have civilian friends (civilian = people without highly special needs kids), but I socialize a lot with people with kids like mine. I am lucky that I am in an area with an active organization (FEAT, Families for Early Autism Treatment) and I started my own group, a biomedical discussion group. Between the two of those, I have met literally dozens of families. But I am the instigator/planner, even though my youngest is probably the one with the most severe needs of the families I know. I host dozens of game nights, holiday parties, meetings, etc. It is a comfortable feeling to know that you can chat and have a glass of wine, and no one will bat an eye if one of (or all of) the kids does something nutty. And the kids seem to really feel the acceptance and lack of pressure too, because no kid ever wants to go home, they all seem to have a good time. Lets face it, "the NT's - neurotypicals, are a boring bunch. Now parents like us, we know how to cherish a good time. I savor it, enjoy every minute. I take great pleasure in planning my parties, I especially love music and make special play lists for the occassion. And I DANCE. Heck, I am 45, I don't have to worry about looking cool, all I care about is having fun! So there may be other families in your area that would love to get together. And you can always come over here Halloween party in 6 weeks! Woohooooo!

That is indeed wonderful news, and so encouraging for the rest of us!

What a coincidence this thread popped up - I just got my order of XClear in the mail yesterday. We have used it it the past but haven't in a while, so I am hopping this will help a bit. I definitely suspect nasal strep in my youngest son and think irrigation plus Xylitol is helpful for clearing that up. We have been using Biotien toothpaste for years and really like it.

WOW~thanks for posting this norcalmom!!!

The Polio vaccine was a disaster - a cancer causing monkey virus contaminated in millions of doses, and our Public Health agencies covered it up: http://www.sv40foundation.org/ http://www.amazon.com/Virus-Vaccine-Cancer-Causing-Contaminated-Americans/dp/0312278721 The reason they kept this information from the public? They didn't want to shake public confidence in the vaccine program I am usually very optomistic, but medicine in America is BIG business, and the Powers That Be don't like new things they didn't OK first. I hope you are right though and this information really gets a fair shake someday soon!

Hi Erica, I am new here too, but I wanted to jump in because I have two boys with autism that I also suspect have PANDAS. They are 12 and 15 and have many things in common with your son. (LOVE his name by the way!) Responding to antibiotics is a huge clue, and I hope and pray you have struck pay dirt, which to me, sounds like you most definitely have! I am sure the other parents here will chime in with some useful information for you, but my advice would be to run with this - get to a doctor in your area that is familiar with PANDAS asap! I think many of the so-called 'autism' behaviors are really strep behaviors/symptoms. My oldest for example will have autism flare ups that come and go. I have often called it transient autism. Now I think those have been PANDAS flares. My youngest has made some incredible gains on Amoxicillin, only to crash and burn when taken off of it. So now we are focusing on long-term antibioitcs for both. This feels like things are finally making sense. How great for you that you are finding out about this at an age when he can really turn his future around. Go with your instincts, they are usually right!