By Teresa Conrick
If there is one topic that has been increasing in the autism world, it is the issue of the immune system. To explore that further, the explosion of the microbiome research has been just phenomenal. The connection from gut to brain and more specifically, from microbiome to microglia, supports the research I keep pointing out. It is not genes that are causing the increasing cases of autism but what appears to be a drastic change in the bacteria of the gut, the infections of the immune system. There are factors that are causing this to happen. I wrote about my daughter Megan and this connection nine years ago -- :
This brings me to the faded piece of paper I had found recently in a pile of lab reports done on Megan starting in 2000. It was a late night time-line of her health history that I had copied down from her medical chart then as we had just exited the pediatrician that was her main doctor since birth..... our kids are medically sick, not mentally ill, and that should be the focus of research regarding causation and treatments of autism.
Here then is a look backwards, a painful window of time when my daughter's health was telling us that something very bad was happening. These are the notes written by the doctor and staff for the office visits we had.
3/2/93 - Birth - Hep B at hospital
3/26/93 - VACCINES
5/21/93 - VACCINES
7/10/93 - VACCINES
9/10/93 - VACCINES
10/22/93 - VACCINES
12/7/93 - Diaper rash (YEAST) for 6 weeks - ear infection - antibiotics
12/28/93 - Ear infection - antibiotics
1/17/94 - Ear infection -antibiotics
3/21/94 - Virus - antibiotics ( This was a routine practice then - antibiotics as miracle treatment for ALL illnesses)
5/11/94 - Virus - antibiotics
6/3/94 - Loose stool - rash - ear infection- antibiotics
6/18/94 - VACCINES (Including MMR)
6/28/94 - Fever- rash on body - ear infection - antibiotics
7/11/94 - Ear infection - antibiotics
8/22/94 - On vacation in WI and became sick. Not happy - crying - lethargic - Dr. there unsure of the cause.
9/9/94 - Rash - loose stools - VACCINES
10/17/94 - Vomiting - diarrhea
11/1/94 - 103 fever - virus
5/23/95 - Irritable - nosebleeds
10/9/95 - Not talking - PDD dx - to specialist
11/27/95 - Temp. - not eating/sleeping - ear infection - antibiotics
12/19/95 - 103 fever - crying for 2 days - ear infection - antibiotics
12/21/95 - Waking at night - crying - acute bowel - Donnagel
12/28/95 - Re-check - right ot media - antibiotics
1/25/96 - Ear infection - antibiotics
2/8/96 - Re-check - unhappy- crying - nosebleeds - antibiotics - nosespray
2/29/96 - Check up - nosebleeds x5 - iron for anemia
3/26/96 - 104 Fever - Zithromax
4/8/96 - Re-check - pulling on ears but no ot media
4/23/96 - Waking at night - no ot media - "sleep problems"
6/10/96 - 2x nosebleeds - 102 temp - nose spray - antibiotics
6/26/96 - Fever - antibiotics
9/3/96 - Poor appetite - antibiotics
10/23/96 - Pharyngitis - severe - temp - antibiotics
1/4/97 - Congestion - cough - antibiotics
3/4/97 - Pulling on ears - Claritin
3/10/97 - VACCINE
5/9/97 - Rash on face - allergy?
5/13/97 - Swollen finger - antibiotics
7/29/97 - Not eating well - nothing found
8/7/97 - Rash on back - irritable
9/8/97 - Fever 3-4 days - rash on face - virus
3/19/98 - Diarrhea/vomiting x 10 days - fever on/off - antibiotics
And this continued on and on. Interestingly, immune issues in autism vary from being sick often or rarely being sick but the research is lacking. PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infection) is now seen as a medical illness manifested into tics and obsessive compulsive behaviors yet our children's labs showing similar yet unique viral, bacterial, and fungal patterns are disregarded and their illness described only in behaviors. How much longer is autism to be ignored as a disorder with roots in the immune system?
Finally, we see more research making these connections. PANS, Pediatric Acute-onset Neuropsychiatric Syndrome, is the newer acronym to describe what seems to be happening. It includes ALL types of infections, not just Streptococcus . Here then is a study that I think holds true for many children who regressed into autism. It describes my daughter, the pain and suffering....and the years and years of denial by too many medical professionals:
The aim of the study is to characterize a subgroup of patients with IA within the PANS diagnosis study.
Twelve participants had IA [infantile autism]. Eleven of these reported a developmental regression with loss of abilities. Two of the IA patients also fulfill criteria for PANS. Eight of the IA patients had been treated with antibiotics for psychiatric symptoms and 4 reported a positive effect of this treatment. Nine of the patients had elevated test results suggesting possible PANS according to Moleculera Labs.
Very early onset on PANS may be phenotypically similar to IA with regressive features. Further analysis of the immunological attributes of patients with autism with regressive features is warranted.
I have waited YEARS to see this. We are getting closer to the medical reality and treatments for those severely affected by autism. Is it really autism or is it PANS? OR...is it really an immune system damaged early in life and the behaviors became the focus, SINCE 1938 ? Thousands of families are waiting for treatments to help their very ill children. It has been a tragedy for far, too long. Thank you to the researchers who are brave and changing the paradigm of autism.
Teresa Conrick is Science Editor for Age of Autism.