My sweet E was born healthy 16 years ago following an uncomplicated pregnancy. She had great Apgars and was amazing at breastfeeding right from the start.
At E’s two-week check-up, I questioned the pediatrician on the necessity of the hepatitis B vaccine, which I had declined in the hospital due to “extreme” intuition. I didn’t understand why she needed the vaccine: I did not have hepatitis B, and she was not in a high-risk group as she was not sexually active or sharing needles with drug users. I was quickly shut down and told that if I did not give her vaccines she would get the diseases and die. Though I had researched just about everything in regards to pregnancy and parenting, I had not researched vaccines and took the doctor’s word as truth.
For the first 15 months, E met all of her milestones right on time. She was walking, talking in three-word phrases and even identifying some letters and numbers. I was absolutely smitten by my little genius. But at her 15-month well-baby check-up everything changed. On that fateful day, E received multiple vaccines in combination shots, including the fourth DTaP and second MMR. Within hours, she began running a high fever, which reached 105.7 over the course of her reaction, experienced high-pitched screaming as a result of brain swelling, had seizures, decreased consciousness and painful swollen knots at her injection sites. At first, the on-call pediatricians dismissed all of her symptoms as a virus, though her primary pediatrician diagnosed her with a severe reaction to the pertussis vaccine. We were told that she would fully recover once the initial reaction was over.
They were very, very wrong.
“E” prior to her 15-month check-up
When I walked into her 15-month check-up, the doctor wrote that she was markedly advanced. When we walked out, she began the decline into a very sick and disabled child. E was permanently injured by her 15-month immunizations. We were later told that her prognosis was grim at best. She has damage to her brain, as seen on CT and MRI scans, epilepsy resulting in intractable seizures, global learning delays, chronic lung disease, PDD-NOS – an autism spectrum disorder, and severe autonomic system dysfunction.
For 15 years, I have wanted to know why. I have begged God to help me know why. Think Sally Field in Steel Magnolias ugly-cry begging “I wanna know why” every day for 15 years. Last week, we finally got our answer.
We have known for a long time that E’s immune system was tanked, but doctors didn’t know why. Two years ago, on our quest to treat her gastrointestinal symptoms, her immune system dysfunction was unveiled, and she began immunoglobulin therapy. It has helped – a lot – but we still didn’t know “why.” Recent genetic tests revealed that E has a genetic mutation affecting her tumor necrosis factor receptor causing a disease called common variable immunodeficiency.
If you think of the immune system as the military, you have different kinds of soldiers (like army, marines, navy, and air force) that protect you from illness. These are your immunoglobulins. You can remember them using the acronym GAME (IgG, IgA, IgM, and IgE). When it comes to immunoglobulins, E’s body doesn’t make enough to protect her. The immune system also has a cellular response with several different components. When it comes to my girl, it’s her B-cells that are affected. She has enough, but they don’t work properly; they don’t produce antibodies when exposed to pathogens. Using the military example again, E’s doctor said it was similar to having 100 soldiers go to battle – she has plenty of them – but they all have diarrhea and are too sick to fight. So the battle is lost.
E’s body has been trying to help her. It’s compensated for this situation by producing high amounts of tumor necrosis factor alpha (TNFα) in attempts to keep her healthy, but this flawed response is actually making her worse and causing further damage to her brain, hence the autonomic nervous system failure. We have realized this is why we see such behavioral set-backs when she is sick. Her TNFα shoots through the roof, and the cytokines further aggravate the brain inflammation.
After following our story for many years, I expected that many of our friends and family and people who know she was compensated by the National Vaccine Injury Compensation Program (meaning we “won” in “Vaccine Court”), would have some questions. These were my preemptive answers:
1) Was E born with this mutation? Most likely – medical literature shows that this is inherited. Genetic testing will be done soon to determine if I also have the mutation. Our other children will have to be tested if I carry it. We do know that it is heterozygous and dominant, but again further testing is needed as there is always the possibility of de novo mutations. Epigentics anyone?
2) Does this mean she was born with autism? No, not at all. She was not born with it! While E would have most likely developed immune system dysfunction, there are reported cases of siblings with the mutation being asymptomatic.
3) What does this have to do with her vaccine injury? A lot actually. You know those people that “cannot receive vaccines”? E is one of them. She should never, ever have been vaccinated in the first place. She cannot produce antibodies to vaccines. This is why she became so violently sick and had an encephalopathy. Her body simply could not handle the job it was being presented with.
4) What is her prognosis? It’s too early to tell. The good news is that we know. The bad news is that she is presenting so severely at a young age (and has been for quite some time), and she has the inflammatory response from the TNFa. She already has chronic lung disease, and this puts her at greater risk as well.
5) How on Earth did the doctors miss this? In many ways, she is much sicker than she should be from this disease. It threw them off. The vaccine injury has complicated the bigger picture because of the damage to her brain. While we are blessed that her doctors acknowledge her vaccine injury (because so many don’t), I truly believe in order to protect their own mental health, they simply cannot accept that this kind of damage can be done.
We saw her neurologist this week. He is an amazing man who has fought tirelessly for my child. He told me to look up an article. This one: “Chronic Progressive Poliomyelitis Secondary to Vaccination of an Immunodeficient Child.” He told me that they have known for years that vaccines can cause lasting neurological damage in immunodeficient children. The abstract reads,
Our observations suggest that, under unusual circumstances, such as immunodeficiency, attenuated poliovirus can produce a chronic progressive neurologic disease. This case also emphasizes the need to diagnose immunodeficiency as early as possible, so that live-virus vaccines will not be administered.
That article was published in 1977. For almost 40 years they have known.
6) Does this change my position on vaccines? Absolutely not. Not in any way, shape, or form. It actually strengthens it.
Let me repeat from the almost-40-year-old abstract, “This case also emphasizes the need to diagnose immunodeficiency as early as possible, so that live-virus vaccines will not be administered.”
No parent will know if their baby was born with the same disease-causing mutation that resulted in E’s immune deficiency when pediatricians begin to push for the first round of vaccines [after the birth dose of hepatitis B] at two months of age. That round includes the live-virus rotavirus vaccine. Without specific newborn screening, a one-size-fits-all approach and mandated vaccines are certain to continue to injure children like my daughter. How could I ever endorse forcing anyone to vaccinate knowing that this is a real and possible risk? Whenever there is a risk, there must be a choice! And it is ethically imperative that we maintain that choice with vaccine exemptions. It is a human rights violation for our government to force vaccines on someone who is convicted by intuition, God, or just reason.
And when it comes to the concept of “herd immunity” to “protect” children like my daughter – and possibly my other children – I do not consider it someone else’s responsibility to keep my child healthy. That is my job. I am an adamant supporter of vaccine choice, and I believe that parents should have the choice to do what is best for their own children. But you must know that if your child is injured, you are alone. The doctors who push vaccines will not be there to help you. The government and lawmakers who mandate them will not be there to help you. You will be emotionally and financially alone.
Our story is one of caution and truth. Vaccines do injure. Vaccines do kill.
“E” today
Fortunately for E, I am stubborn. I was unwilling to accept a dreadful fate. We enrolled her in special education schools were she received multiple hours of therapy for speech. She also received occupational therapy, physical therapy, and some alternative health therapies. She’s come a long way since her original ASD diagnosis. She is incredibly clever, entertainingly quirky, extensively compassionate, and endearingly unique. I affectionately described her as Forrest Gump and Juno’s love child. Sadly, E is still very sick. Most days are bad days; she never feels good, so it is only a matter of how bad she feels. But we push through and make the best of it.
A while back, E wrote, “I am my mom’s miracle.” She is right. And this is why I share her story: because she deserves better than to be sacrificed for any “greater good.”
~ Molly
Molly is not the author’s real name. Molly was forced to take up a pseudonym, cancel her blog, and change her phone numbers after the award from the National Vaccine Injury Compensation Program due to threats and solicitations. As if being the parent of a vaccine-injured and immunocompromised child is not difficult enough.
How many MRIs might E have gotten and were they with Gadoliniumc contrast? I have sich HIGH amounts in me nearly 7 years afetr my last MRIs with gadoliniumc contrast, please have her checked through Mayo Medical Laboratories.com Look under “G” if she has any tight skin areas that resemble scleroderma, get them biopsies! Mayo will only quantify dermal biopsies so organs do nto count unless you have some one who will d it separately! I am currently getting chelation to remove the gadolinium from me and it is coming out in buckets! All from a drug they say leave sthe body within 96 hours!
Power Injectors for Gadolinium
https://radiology.ucsf.edu/patient-care/patient-safety/contrast/mri-with-contrast-gadolinium-policy#accordion-off-label-use-of-contrast-and-power-injectors
Off-Label Use of Contrast and Power Injectors
Excerpt from the ACR Manual on contrast media1: “Radiologists commonly use contrast media for clinical purpose not contained in the labeling, i.e. off label use. By definition such usage is not FDA approved and the legal ramifications are unclear. Physicians have some latitude in using gadolinium chelates off label as guided by clinical circumstances but must be prepared to justify such usage in individual cases eg MR angiography, cardiac applications and pediatric applications in patients younger than 2 years. No gadolinium chelate is approved in the United States for use in a power injector”. Although gadolinium administration via a power injector is a commonly accepted practice, it is technically an off-label use of the power injector.
ACR Manual on Contrast Media Version 7, 2010. ACR Committee on Drugs and Contrast Media.
http://www.nature.com/nrneph/journal/v3/n12/full/ncpneph0660.html
the comments here for sure are NOT true if I am cheating gadolinium nearly seven years later NONE OF IT TRUE!
Your daughter deserves to have a proper diagnosis, I hope you are abole t fnd iut if she ha this toxic heavy metal contrast STILL in her body! Good luck, looke me up on FB if you find any!
PSI also have IGG issues with Hypogammaglobulinemia, IVIG was approved by BCBS but I want to chelate gadolinium before I entertain IVIG treatment!
Cathy
Hi Molly, Our son has the exact same diagnosis of CVID along with PANDAS and ASD. We just got the CVID diagnosis about 6 months ago. We stared SCIG and he has made developmental gains. Thanks for sharing your story.
Wow, I’m in tears. My sons story is similar. He has a rare neurological autoimmune disorder called Opsoclonus-Myoclonus Syndrome that was trigger by his 12 month vaccines. His immune system attacks his brain. He went from walking, and babbling and a happy 1 yr old little boy. Less than a week after his shots, he couldn’t walk, crawl, sit up, then his eyes began to roll back in his head and twitch from side to side. It took 6 weeks to figure out what was wrong.
It’s been a long journey. He’s had chemo and has done IViG treatments for the last 8 1/2 years. We also did steroid shots for 4 1/2 years and oral steroids for 2 years. He’s 9 now and healthy for the most part.
I feel exactly as you do that vaccinating should be a choice and that everyone is trying to do the best for their children. We should treat each other with kindness.
I will keep you in my thoughts. Stay strong momma!!
Mandy,
My son also has opsoclonus-myoclonus syndrome from his DPT shots when he was a baby. He is 22 years old now and unfortunately he is in a wheelchair for life. My younger son is not vaccinated (for obvious reasons). Where do you live? Did you ever speak to Dr. Pranzatelli? He was conducting a study on OMS kids for quite a while.
I’m sorry for you and all the mom’s and dad’s that have vaccine injured children.
Hi Laura,
Dr P was actually a large part of Carter’s care for many years. We attribute Carter doing so well directly to Dr P and his recommendations.
I’m sorry to hear about your son. It’s not fair. How old is your son?
Are you on FB? There’s a group for OMS Parents/caregivers called OMSLife. Are you on the group? I would love to talk to you more.
“Extreme intuition”. I identify with that feeling in respect to vaccine wariness as a new mom 6 years ago. That extreme intuition has never subsided for this subject, and the more I learn, the more that feeling is supported. I want genetic testing done for every child. I recently found out there are members of my family with mthfr mutation that can decrease the bodies ability to cleanse itself of toxins…I have not had my kids tested but often wonder if I dodged a bullet since that condition is hereditary. Thank you for sharing your struggle, my heart is with you.
Hi Molly,
I’m so sorry to hear your daughters story so far.
May I suggest you consider looking into probiotics. There’s a lot of pertinent information out there suggesting that maintaining the gut flora & biome is key to alot of health disorders. Most, it not all of the world is in a state of yeast overgrowth in their bodies, which leads to auto-immune dysfunction & ongoing symptoms of dis-ease. Here’s a link to a pro-biotic I use. http://tiny.cc/iip02x It’s a start. If you’re interested in more information email me, I plan to have a blogpost published soon.
My heart goes out to you and your daughter. Something, also, not talked about are all the neurotoxins in our homes. From insecticides and herbicides that destroy through the nervous system and cellular level to the cleaners and colognes and candles that have toluene and benzene(paints too) and hundreds of neurotoxins(plus respiratory insults and hormone disrupters). Sadly, we need to learn how the world works.
No question none of that is good but she said it was the vaccine, we need to know how they really work and what they are really causing. So they have known since 1977 these children would be severely injured and haven’t in 40 years done one thing to try and protect them. Quite the contrary they now want to force every single child and adult to take all the vaccine they put on the schedule. There will be a lot more injured, they know it and all this is to protect children from what?? Oh yes the childhood diseases that not long ago were common with few complications. Every child should be tested and protected before having even one vaccine.
My heart goes out to all moms who are fighting this, my daughters are much older so their vaccines (wish I had know 50 yrs ago) were relatively mild but after reading these sad stories I can now see that they have suffered effects from vaccines.
May God grant us the knowledge to keep spreading the word so as to save others.
Genetic testing for hundreds of SNP’s affecting detox, methylation, clotting, allergies, ETC….can be done through 23andme.com. The findings are yours personally and never go in to medical records unless you use a conventional doctor who is required to record them. Create a false name if you are worried about “safety”. The kit is $99 for the first person on the account and $79 for any others thereafter. You will receive raw data back (the govt no longer allows them to provide health reports) that you can then pay $20 to run through livewello.com where a report will be generated. Go to livewello and you can view sample reports. You can then take this information to a practitioner or set up a consult with one online(there are some good ones online that are reviewed in a facebook group-) who can review the results, other bloodwork that you may already have etc and help you determine what is expressing and what to do about it. There is a facebook group called Methyl-nation support(Jeannie Lee Sweeney) that provides a lot of information in their files to help you get started. I would also suggest going to Dr. Amy Yasko’s website and reading her free online ebooks esp Autism:pathways to recovery, to learn more about all of this. It is not just for those with autism but rather for anyone with these genetic issues. She has many other that are free and helpful too. https://www.scribd.com/DrAmyYasko. I hope this helps. There is much that can be done to help if you know.
23andme has a very, very limited number of SNPs they test for. The vast majority of genetic mutations cannot be found through 23andme, and furthermore, 23andme is NOT done at a high enough quality for genetic diseases. Many genetic diseases are caused by many, many SNP mutations, not individual SNP mutations (usually.) for example, 23andme cannot test for most hereditary connective tissue disorders such as Ehlers-Danlos Syndrome Type IV (Vascular), which is often fatal before 40 and 20% have life-threatening complications by age 20. Strokes, aortic ruptures, etc.. CVID is thought to be caused by various mutations within a gene (which can cost over $1,000 to run the whole gene) Furthermore, some people with the mutations do not develop CVID (the genetic-sociological-environmental trigger theory) and some people with CVID do not have any known cause for their disease. Some suggest CVID may actually be a combination of disorders that manifest similarly.
Even the blood type analysis offered by 23andme is not 100% accurate. Also, there are tons of causes for clotting. Every heard of antiphospholipid syndrome (Sticky blood syndrome)? It’s caused by autoimmune antibodies, so genetic testing cannot test for it. Patients with CVID and other antibody deficiencies can also have APS/Sticky Blood Syndrome without ever showing the antibodies in the blood because they are seronegative, so it can be very very difficult to diagnose them with autoimmune disorders because very few doctors believe in seronegativity but they nonetheless have things like lupus. Up to 25% of CVID persons have autoimmunity as part of their symptoms, which is a paradox to persons like rheumatologists.
I show tons of risk-increased alleles for lupus (which I now show symptoms for), multiple sclerosis, and sjogren’s (family history of sjogren’s, rheumatoid arthritis) also have increased alleles for Type 2 Diabetes (family history) and Crohn’s (family history). I am also being tested for immunodeficiencies now (low IgG and low antibody response to the pneumonia vaccine I had as a child. Currently have to wait 4 – 6 weeks before testing my vaccine response again). I also show almost ZERO antibodies in my bloodwork despite having inflamed, swollen joints from migratory arthritis, discoid and malar rashes, lupus-like oral ulcers, idiopathic fevers of unknown origin, swollen upper left abdomen either due to pericarditis/pleuritis or a swollen spleen (also found in CVID), and exacerbation of symptoms in sunlight. Even had blood in the urine once but it might have been due to a swollen spleen if it was the spleen that was casing the excruciating pain and near impossible ability to breathe.
So… please don’t buy 23andme thinking it can cure you. I have the old version and it’s virtually useless except for a handful of genetic diseases that they can easily test for. There’s thousands of rare diseases. CVID is found in like 1 out of 25,000 of the population if I remember correctly. 23andme does not test for all of the PIDs (primary immunodeficiencies). There’s over a hundred of them.
23andme provides you with the raw data, though, which you can take to other sites and apps for more information.
So…how do you find out if your child is immune-compromised??
Hi Kelly!
There are several ways to discover if your child has immune system dysfunction. However, it is not routinely tested – usually testing begins when a child is symptomatic.
If you have a child presenting with symptoms, I recommend running Ig panels (with sub-classes) first.
Peace,
Molly
Would you please name the gene you mention as involved? We also have immune dysfunction, that according to the Immunologist ” is not bad enough to treat”. We have made amazing progress in health and cognitive skills by using oral immunoglobulins. I would like to check our genetics results for the gene you mention. Thanks!
Hi Laura!
The specific disease causing mutation is the TNFRS13B on Chromosome 17. It can be homozygous or heterozygous (as in E’s case).
Best wishes for you and your little one:-)
<3 Molly
Thank you for sharing your perspective! You see that I have moved to a pseudonym also. It is hard to speak truth when you work in the medical profession. Everyone thinks you are crazy! I believe that we are being heard, and that is why the battle has intensified. Keep speaking truth.
Hi Molly,
Thank you for sharing this! Our daughters’ stories sound eerily similar. Like you predicted (because the 2 month vaccines now include a live virus), my daughter had an AWFUL reaction to them. Clinically, she was a mess and her head swelled up like a Macy’s Day Thanksgiving parade float. At her current age of 22 months, her fontanel (soft spot) is still not closed and she is developmentally delayed.
At around 15 months, we discovered she has a primary immune deficiency (IgG). Fortunately her integrative MD thought to test her, in spite of the fact that she had rarely been sick. (Likely due to the fact that we were barely able to leave the house with her, because she never slept – ergo WE never slept.) Intuitively, I also knew that my daughter’s immune system was probably compromised. I learned in talking to my own mother, that she had been forced to remove me from daycare as a child due to constant illness, and I was always very susceptible throughout my life.
I suspect there is a genetic element to my daughter’s condition as well, but I have not pursued the testing because I’m not seeking restitution and the treatment (in my eyes) will remain the same. That said, this whole experience has been very ostracizing and I am constantly bombarded with, “But, has she been diagnosed with anything?” My newly outspoken views on vaccines alone have alienated many friends and family. It would be cathartic in some ways to have a lab I could point to and say, “There, that’s the problem – okay?!”, because it seems as though sometimes that’s the only way people can make sense of illness or injury. Some of my more nasty family members have alleged that I’ve made it all up in my head, because we have no official ‘diagnosis’. (I’m sure you can relate.)
We stopped vaccinating after her 2 month vaccines and have seen steady improvement with a variety of bio-medical treatments. In terms of her immunoglobulin counts, those have increased dramatically without the use of intravenous therapy (although I was investigating that route at the time).
Best wishes and good luck to you and your daughter, and thank you again for sharing your story!
HOLO,
Thanks for the comment. I have been incredibly blessed with supportive family members, mostly because they witnessed the dramatic change in E.
PID is a a diagnosis! I’m so sorry your friends and family refuse to accept that.
When you say IV therapy, are you using IVIG?
Best wishes and BIG HUGS! You are not alone:-)
Molly
Thank you for sharing this. My daughter is also immune compromised with ADD and learning disabilities (her brother developed autism after his encephalitic reaction to his first round). Both were healthy, robust newborns. But she has Guillain-Barre and HSP (vasculitis) and severe allergies and reactions including dermatographic urticaria. She is almost 18 and has been under homeopathic care for 12 years. She has made excellent improvement mentally/emotionally but still has the allergy issues which seem to be getting worse instead of better, possibly because she does a lot on her own now and eats junk.
She had chronic ear infections following her first round (and maintenance antibiotics) and developed the measles after her MMR. Then the Guillain-Barre kicked in around age 5 which the doctor said was “non-polio poliomyelitis” but we know what that means.
Thank you so much for the article link. It’s just another piece of our puzzle. I concur with everything you said. I just wish more people would listen. They may say, “Well, for your family there should be an exemption.” But it’s every single family that faces the risk so every single family should be allowed a choice.
My heart goes out to you and your daughter.