IVIG, Autism and Immune Dysfunction
By Teresa Conrick
My daughter, Megan, age 26, had her first IVIG infusion two weeks ago. It has been a long road, YEARS getting here. Mostly it has been, “This is autism”, or “We don’t treat autism and immune problems.” It was EIGHT years ago that I first began to write about autism and PANDAS/PANS because Megan was so affected by behaviors that screamed from her gut and immune system. Her doctor, her brilliant and wonderful MAPS doctor, knew Meg’s immune system did not function properly from day 1 that we met. She has helped Meg immensely and has been key in our path to treating Meg’s PANS and immune abnormalities. Also, increasing numbers of parents know, as they also have children on the autism spectrum, who have behaviors and symptoms they suffer with every day. We parents, have witnessed our children exhibit neuropsychiatric behaviors and immune/autoimmune medical symptoms and are frantic to help them. Too many doctors and hospitals though, have dismissed us. Those who do take anyone with the “A” diagnosis, often are so inundated by distraught parents with their children, children who present with many symptoms that can appear complex, that the doctors end up turning down any new patients, as they have no time to see them all. More autism plus more immune issues minus enough doctors equals ===== a catastrophe.
For years, we have been making connections from our children to GI disease ; allergies ; infections ; mast cell dysfunction ; mitochondrial dysfunction; increased cytokines ; skewed B cells and T cells ; autoimmune encephalitis ; environmental assaults - like mercury; and immune, vaccination, and infection reactions (Great research article here , yet it’s another paper that has been retracted, as anytime vaccines are brought up - the paper is branded as “not acceptable;” ------ and this last one is a favorite research topic of mine, and a most important one as we discuss the immune system, is the increasing microbiome abnormalities in autism . Facts are facts and the truth is --- many on the autism spectrum have immune systems that are malfunctioning. Meg’s started when she was young but some parents report that their child’s behaviors went from ok to alarming well into puberty and beyond. The hint of PANS or PANDAS went full throttle as OCD, perseveration, eating issues, anxiety, agitation, school refusal, and many more, took over. If you hear a doctor tell you, “Well, that is simply autism,” turn your back on them and leave. You are correct. Autoimmune Encephalopathy may be a more medically appropriate diagnosis for what is happening on the autism spectrum. Immune testing, GI testing, allergy testing and more needs to happen. Something IS wrong and your child deserves better medical care. Shame on any doctor who will not help that child. Be leery too, if you are only told to take them to a psychiatrist for an SSRI, for example, as that can worsen these effects, unless the doctor is aware of the research on PANS and autism.
The PANS patients in this study had commonly been treated with antibiotic (N = 675), anti-inflammatory (N = 437), and/or psychotropic therapy (N = 378). Response to antibiotic treatment was best when treatment was relatively aggressive, with broad-spectrum antibiotics and courses of >30 days generally producing the best results (i.e., up to 52% of patients achieving a ‘‘very effective’’ response)...Intravenous immunoglobulin (IVIG) had been used to treat PANS in 193 (28%) of the patients and was at least ‘‘somewhat effective’’ for 89%, although for 18% of these, the effect was not sustained. The highest rate of sustained response to IVIG treatment was seen in immune-deficient patients who received doses of at least 0.8 g/kg IVIG on a regular basis. Psychotropic medications, most commonly SSRIs (38% reported a trial), were commonly employed, but were often ineffective...Among the PANS patients represented in this study, relatively aggressive treatment courses targeted at eradicating infection and modulating the inflammatory response appeared to provide the best caregiver-reported therapeutic results, and to be generally well tolerated…….
Since I started discussing Megan and her many health issues ten years ago , I have met so many devoted parents who see the same issues in their children. One of them, a brilliant and caring mother, who I have friended from both AoA and FB, I must thank here, (THANK YOU!) as her advice and trailblazing helped orchestrate Megan’s new, added diagnosis, Nonfamilial Hypogammaglobulinemia , a non inherited condition:
Hypogammaglobulinemia is a problem with the immune system that prevents it from making enough antibodies called immunoglobulins. Antibodies are proteins that help your body recognize and fight off foreign invaders like bacteria, viruses, and fungi.
Without enough antibodies, you’re more likely to get infections. People with hypogammaglobulinemia can more easily catch pneumonia, meningitis, and other infections that a healthy immune system would normally protect against. These infections can damage organs and lead to potentially serious complications.
My thanks to all who have personally helped me and to those who are helping the ever increasing children who have an autism diagnosis and disabling immune dysfunction. Whether it is research or medically treating the children, history can be changed.
Hi Michael,
Thank you for the link as it is a much better read! I did post the other one on purpose to show the ridiculous and callous craziness. The paper was very well done and it's only issue -- vaccines-- were being discussed as true medical and biological issues in autism.
Thanks again.
Posted by: Teresa Conrick | June 26, 2019 at 12:08 PM
Thank you Teresa, for the update on IVIG and your daughter. Michael thank you for providing the BS-retraction-free link to the McGinnis-Rimland paper. I had not seen it before. It was published before my son was diagnosed. I wonder if it had not been buried and organizations like Autism Speaks, ARI, CDC and FDA had not been subverted - if my son' brain damage could have been avoided or at least mitigated.
Posted by: Beleaguered Autism Mom | June 26, 2019 at 11:34 AM
Teresa, Thank you for this recent information. I was wondering if the link you posted in the McGinnis-Rimland paper was the link you intended. This is a better link and you don't have the read the bull-shit reasons for the paper being withdrawn. http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.965.7091&rep=rep1&type=pdf
Thank you for taking all of us on this journey to recover Megan's health and so many other Megans in our world.
Posted by: michael | June 25, 2019 at 03:52 PM
hypogammaglobulinemia. Thanks for the name to add to the long list. Sigh. My sister-in-law has that for sure, and she is taking these treatments pretty regularly too. It all sounds like all of our kids when they were babies, freshly vaccinated, all the recurring pneumonia, ear infections, one thing after another.
Glad you were able to get this for Megan, glad to hear how it is going for you too. Good luck, and I hope an pray for the best out come for Megan. My sister-in-law is doing very well.
Posted by: Benedetta | June 22, 2019 at 10:50 PM
Sharon: Yes, this is true in every state where raw milk is available (the Farm to Consumer Legal Defense Fund has a graphic and text showing the availability of raw milk and specific laws in each state). My point was that it is a good idea to form a relationship with the farmers from whom we purchase our food. Visit the farm. I do this for most of the food I buy. We know we can't rely on state officials in the "public health" realm to ensure the safety of the products they regulate, nor would I necessarily trust them in the food and agricultural realm. The Raw Milk Institute developed a set of protocols which, when followed, can almost guarantee a safe product.
Posted by: Gary Ogden | June 22, 2019 at 06:06 PM
Gary, In Massachusetts the laws a very strict on selling raw milk, they must be approved and inspected regularly.
Posted by: Sharon | June 22, 2019 at 01:27 PM
Oh also wanted to post a better link/explanation regarding the Rimland-McGinnis study on Vaccines and Autism....it is an excellent researched paper.
https://www.precisionvaccinations.com/mmr-vaccine-does-not-cause-autism-says-cdc
Posted by: Teresa Conrick | June 22, 2019 at 12:31 PM
Hi Tom,
I am so sorry to hear about your daughter's mast cell issues. I think you will find this interesting and hopefully helpful. Some smart moms and our Doctor have helped me out with this by showing me the research. Foods can really push the histamine issue and produce all kinds of symptoms, Urticaria is definitely one but also PANS type behaviors.
https://tmsforacure.org/nutrition/
"A second part to the theory is that certain foods may trigger mast cells to release histamine. There are long lists of histamine releasing foods on the internet, but these lists are based on anecdotal reports. Since there is so much individual variation, and very little concrete information, the low histamine diet is a general guideline that requires experimentation, rather than a diet that should be followed exactly."......
https://www.ncbi.nlm.nih.gov/pubmed/17490952
"Diamine oxidase (DAO) is the main enzyme for the metabolism of ingested histamine. It has been proposed that DAO, when functioning as a secretory protein, may be responsible for scavenging extracellular histamine after mediator release. Conversely, histamine N-methyltransferase, the other important enzyme inactivating histamine, is a cytosolic protein that can convert histamine only in the intracellular space of cells. An impaired histamine degradation based on reduced DAO activity and the resulting histamine excess may cause numerous symptoms mimicking an allergic reaction. The ingestion of histamine-rich food or of alcohol or drugs that release histamine or block DAO may provoke diarrhea, headache, rhinoconjunctival symptoms, asthma, hypotension, arrhythmia, urticaria, pruritus, flushing, and other conditions in patients with histamine intolerance. Symptoms can be reduced by a histamine-free diet or be eliminated by antihistamines."
Meg recently started on a DAO and it is helping quite a bit! She did take an antihistamine but it was not enough relief for the full day and did not help with the food issue. You can find them on the internet like Amazon,,,,,https://www.amazon.com/Seeking-Health-Supplement-Intolerance-Supplements/dp/B00EOBH8KG/ref=sr_1_2_sspa?crid=94MC3BLBK5CT&keywords=dao%2Bsupplement&qid=1561217708&s=gateway&sprefix=dao%2Caps%2C175&sr=8-2-spons&th=1
I hope it you try this it will help your daughter, too......
best
Teresa
Posted by: Teresa Conrick | June 22, 2019 at 12:01 PM
Maurine,
Thank you so much for always being so supportive and helpful. Let me know how things progress with Josh. You have had a hard year and deserve some peace now. All our love----
Posted by: Teresa Conrick | June 22, 2019 at 11:44 AM
Sharon,
Thanks for sharing your story. Glad he is doing better.
Posted by: Teresa Conrick | June 22, 2019 at 11:40 AM
Teresa, I was very excited to read this news this morning. Your daughter and mine have often seemed to have very similar symptoms, so I read all that you post with great interest. Recently Sam has started exhibiting full-body urticaria. Naturally we have eliminated all possible allergens, as well as done an inventory of anything in her life that may have been changed or altered. The mast cell study you linked to instantly caught my attention, so thank you for your timely post as it has inspired me to go down the same IVIG path. Good luck with Meg!
Posted by: Tom | June 22, 2019 at 08:45 AM
There are few people in my life and Josh's that have been so important and you are one of them. I thank you for being such a good friend all these years and for your help, encouragement and wise advice. I pray this treatment will bring Megan all the good health she deserves. With love,
Maurine and Josh
Posted by: Maurine Meleck | June 21, 2019 at 11:07 PM
Thank you for the supportive comments! Hoping Meg's immune system will get a good boost as we do these IVIG treatments. Jeanne, I hope more FMT treatments become available as I do think those are important!
Posted by: Teresa Conrick | June 21, 2019 at 10:12 PM
Sharon: Raw dairy foods are indeed wonderful for the tummy. Safer than pasteurized, but best to get to know your farmer, and that he/she is following best practices, because unclean raw milk can sicken. For children, goat is probably better than cow for some.
Posted by: Gary Ogden | June 21, 2019 at 08:22 PM
Teresa,
Thank you for continuing to educate and update us on your deep dive into the neuro-physiology of the human immune function and how this applies to your daughter (and so many individuals) labeled as autism. Your knowledge certainly surpasses that of most doctors. I sincerely pray that IVIG will help recover your daughter. I wanted to ask, with all of your research into the microbiome, are you currently doing or planning to do any type of medical care to help heal her microbiome?
Posted by: Jeanne J | June 21, 2019 at 11:33 AM
Dear Teresa, I have been interested in gut health for a very long time, my niece was one of the first children I'd heard of as having autism now in her 40's, but I'd like to tell you the story of my grandson. After his first shots at the age of 1 he lost all muscle tone, he became constantly sick and at the age of 2 he weighed less than he had at 1, he couldn't walk and if his brothers got a 24 hour bug, he had it for 1 week. Holding him was like holding a rag doll, loose and floppy. He'd been to Boston children's hospital many, many times for many torturous tests and they never found anything, just low muscle tone. She wanted answers but never got any. Mentally he seemed normal.
One morning she called me to tell me he was sick again, he wouldn't eat, diarrhea for days, she'd called the doctor and he just told her, 'Well you know, he's just not a thriving child', that was it. He was only 21lbs at 2 and lost even more every time he got sick. In my heart at that instant I suddenly realized we were going to LOSE him!
I told her not to go back to the doctors, we now needed to take things into our own hands and I felt I knew the answer. I grew up on raw goats milk. My older sister was allergic to pasteurized cows milk so my father bought a few goats and we ended up with a whole herd of them. Anyway, in Mass you can by raw milk at certain farms (see https://www.realmilk.com/). So I instructed her to make the 1hr drive to get some raw cows milk and also to the pharmacy to get probiotics, back then no one had heard of them and it was behind the counter and you had to ask for it. (she got Florastor for children).
The results were immediate and dramatic. This child who would never eat and just picked, suddenly could not be filled, he was ravenous. The child with no energy was suddenly was bouncing off the walls. In 2 weeks he went from 21lbs to 25lbs. Today he is a healthy teenager, thin, not strong but healthy, seldom gets sick.
At first I felt it must have been the probiotic, but after more research I realized it was the raw milk, nature's miracle. I read about tests where salmonella was injected into several beakers of raw milk and pasteurized milk, in 24 hours the pasteurized milk was completely overtaken, but in the raw milk there was not a trace of it left. Raw milk is not dead it is alive, living, breathing cells and it has its own defenses, drink it into your gut and it cleans house.
I read an interesting article last year where scientists were scratching their heads over the makeup of mothers breast milk. They were confused because something like 80% of it was indigestible by humans. They knew that nature would have some reason for that and started looking for bacteria that would eat it. For days they found nothing, nothing would eat it, then finally they found 1 bacteria, the only bacteria. They found this bacteria flourished in a baby's gut and produced a protective 'slime' that coated the gut lining, protecting and sealing it. I found that very interesting.
Sharon
Posted by: Sharon | June 21, 2019 at 10:41 AM
Thanks for sharing Teressa and i sincerely hope Megan makes some more gains I`m sure she will continue making them.Well done you both,inspiring.
Pharma For Prison
MMR RIP
Posted by: Angus Files | June 21, 2019 at 09:43 AM
Bravo, Teresa! Hope it helps. Medicine is broken, but there are still many very fine doctors. I suspect many of them will soon be leaving the Golden State, as Herr Pan and Herr Newsom will shortly be turning them into criminals.
Posted by: Gary Ogden | June 21, 2019 at 09:00 AM
Back in 2011 my daughter’s ASO was negative and her neurologist wanted her on antipsychotic meds and I said no. We went on to find Dr. Tanya Murphy who said it was a good decision because it makes it worse.
Posted by: Julie | June 21, 2019 at 08:01 AM
Delighted Megan has the opportunity for IVIG treatment.
what great news!
Posted by: greyone | June 21, 2019 at 08:00 AM