Healing for our family
My name is Kerri Lewis. Those of you that have known me for years know the struggles and losses that my family has endured over the last 30 years. God has blessed me with amazing family and friends that have helped in so many ways through difficult times!
I lost my first husband, Sean, to cancer in 2009 when my oldest son was 3 and I was pregnant with my second. I would not have survived without the help of our family, friends and community. My family is again in a place where we have to trust the power of prayer and the support of our community and friends.
I remarried in 2013 to Jesse Lorhan, my supportive and hard working husband. We have 6 amazing children (Genevieve, Mikey, Isabella, Blake, Brayden, Eli). I am an occupational therapist and have been passionate about being in a healing profession. Life seemed to be finally going "normally" (is there such a thing?) for our combined family until summer of 2016. Since then, both Blake and myself have been diagnosed with illnesses that have greatly impacted our quality of life, work, school and financial stability.
In July 2016, my sweet and gentle now 11 year old son Blake, began to demonstrate a sudden onset of severe OCD (Obsessive Compulsive Disorder), facial, vocal and motor tics and dramatic changes in personality. He became very anxious, defiant and sensory senstive (extremely sensitive to touch, noise and light). Blake started having bowel and bladder accidents daily, regressed in school (especially handwriting, math and reading) and had extreme attention and hyperactivity symptoms. His pupils were dilated and he almost seemed to be in a different world. He was not the Blake we knew and it was very frightening as a parent to watch him completey change in front of us! It took months of blood work, different doctors and research to put the pieces together. Blake was finally diagnosed with an autoimmune disorder called PANS (Pediatric Acute Onset Neuropyschiatric Syndrome). PANS is a misdirected immune reaction from exposure to infectious or environmental agents , where antibodies attack a portion of the brain causing inflammation. The brain inflammation then causes abrupt onset of neuropsychiatric symptoms, such as obsessive-compulsive disorder, tics, severe eating restriction, anxiety, ADHD-type behaviors, bowel/bladder changes, school regression, personality changes, emotional lability, and sleep disturbances. Most of the initial research and cases where documented on PANDAS (Pediatric Acute Onset Neuropyschiatric Syndrome associated with Streptococcal Infections) in the 1990s showing a link between strep infections and sudden onset of OCD. PANDAS is under the umbrella of PANS with PANS showing with same symptoms but triggered from other infections or envrionmental triggers.
What was so shocking about this is that Blake had not shown signs of being very sick the months leading up to this change! His symptoms started shortly after an oral surgery.
We are fortunate to have supportive primary doctors, however there are few doctors in the Country that specialize (or even know about) and properly know how to treat more complex cases of PANS. Speciaists do not bill insurance (many insurance companies do not cover treatment for PANS or recognize it as a medical diagnosis). Additionally, many of the specialized labs/blood work tests are not covered by insurance. Treatment steps include to identify and treat current or recent infections, eliminate environmental triggers, reduce brain inflammation and heal the immune system; this usually means antibiotics, antivirals, antinflammatories (both pharmacutical and natural), clean eating as well as removing and eliminating toxins. Multiple other nutritional needs and supplements are required to support the body during long term antibiotic use. We have had to seek treatment with several specialists out of state. We have made a visit to Tx and 2 visits to CA and have phone consultations every 4-6 weeks to direct Blake's treatment. We have had to pay out of pocket for all speciality visits, labs, phone consults and travel.
Blake's testing found infections from Mycoplasma pneumonia, Lyme Disease (along with Babesia and Bartonella, 2 other vector-borne infections), extremly high antibodies for HHV-6 virus and Ebstein Barr Virus (most common form of mono). Additionally he shows overall low immune system functioning, gut issues, multiple food and envrionmental allergies (gluten, dairy, wheat, corn, rice, grasses). We were also surprised to find out Blake had abnormally high antibodies to several mold species.
We had to undergo mold remediation for 2 levels of our home (we had moved into 4 years ago) from a professional company and had to throw out all of our soft furniture, sofa, mattresses, bedding, toys, carpets, floors and clothes to ensure mold does not continue to hinder healing. This unfortanately was not covered under homeowners insurance (was from an old leak in basement and kitchen sink).
Blake has been on various antibiotics and antiviral medications to fight the infections along with many supplements , gut support and herbs to boost his immune system and support his body through long term antibiotic use. Unfortanately, he has not responded to the antibiotics they way we had hoped. He has found the most relief of symptoms (although short lived) with chiropractic care, acupuncture and neurobiofeedback (not covered by insurance). Despite all of this, Blake is no where near baseline to the healthy and happy Blake before PANS. He has had periods where improvement is seen and we are so thankful for those times! Blake's OCD symptoms, tics and anxeity have been so bad that he can not get himself dressed, take a bath by himself, walk up/down the stairs, get into bed or even walk from the car to the house easily. He has also had some hallucinations and extreme fears that make being by himself very scary. Blake's team of doctors recommended he receive IVIG treatments (introvenous immunogobulin) to help his immune system work properly. He now has had 2 rounds of IVIG (two consecutive days of 8 hour infusions) and is scheduled to have one more in November. He did have improvements after the first infusion, however he has not responded to the 2nd as well, with futher regression happening. The doctors feel that the Lyme and co-infections (Babesia and Bartonella) now need to be treated more aggressively to help his body respond to the infusions better (untreated infections during infusion will cause too much of an immune response that will only increase brain inflammation).
Blake has tried to remain positive throughout this and is determined to someday help other children suffering from PANS. Despite how horrible he is feeling or how much his OCD or tics impact his functioning, he always seems to find something positive in his day. He refuses to let this completely destory his childhood (even though to us it seems it has). He is blessed to have supportive friends and teachers that have been caring and tolerant of his odd behaviors. I know that w/o this type of support he would not be as positive and optimistic as he is today. Blake feels "safe" when he is around friends or is occupied; he can look completely typical or like himself at times, however as soon as friends are gone or he gets home, all of his symptoms come on full force making it hard not only for himself, but the entire family. His siblings often say they "miss" Blake the way he used to be.
The longer he stays ill, the more potential brain damage can be done due to inflammation. He continues to suffer from severe OCD (not like just wanting things clean or excessively washing hands, but intense intrusive thoughts and repetative movements that prevent him from completing simple daily things), motor and vocal tics (licking, spitting, throat clearing), sensory senstivities and attention deficits that have impacted his ability to attend school a full day and learn typically. He is now home schooling with a virtual academy for part of his day to try to help individualize his learning needs and catch up. This has been a major learning experience and challenge for all of us! We are currently paying a tutor (who connects great with Blake) to help us get through this challenging new adventure until we can get more help with schooling.
Blake continues to require antibiotics and antiviral medications (pharmaceutical and natural) and multiple supplements to more aggressively fight the Lyme and other infections, detoxify as bacteria are killed, improve his immune system, decrease inflammation and repair damage. He has one more IVIG scheduled however many children require up to 6 to see remission. Treatment guidelines from the top doctors treating PANS suggest Plasmapheresis as the next step if IVIG does not work (a process that filters the blood and removes harmful antibodies). Blake continues to require huge amounts of nervous system support and will need to start more intensive behavioral and mental health counciling and therapy to retrain damaged pathways in his brain. He requires extra educational support for learning, reading, math and writing. While most of his prescription medications have been covered by insurance, all of the other speciality services such as PANS doctors, special tests (each close to $1,000), Lyme Literate Doctor, counseling, chiropractic care, education support, supplements, herbs, etc. are not covered.
If you would like to read more about PANS please visit some of the helpful links below. My goal is to also help spread awareness and early diagnosis of the horrible disease that impacts children and their families. While early diagnosis can often lead to quicker recovery, many children and families have suffered for years without recovery due to the lack of knowledge, specialists and funds.
Recent Documentary on PANS/PANDAS
Through the journey of trying to find answers and heal Blake, I began having signficant health issues (initially thinking it was just stress). I have had several symptoms on/off for the last 17 years however last February after a 2nd knee surgery (to repair a torn ACL), followed by an illness, all of my sypmtoms seemed to come on at once. It was like a tornado of physical, neurological and mental symptoms taking over my body all at once! Blake's diagnosis of Lyme Disease made me investigate further the possiblilty of this for myself. I was diagnosed with Lyme Disease last May (along with co-infections of Bartonella and Babesia), an active Epstein Barr Virus (mono), an H Pylori infection and Small Intestinal Bacterial Overgrowth. I was suffering from extreme immune difficulites and adrenal fatigue. Most likely I have had Lyme for years but it remained "dormant" in my body until the stress of Blake's illness and my immune system could no longer fight the battle.
The best way I could describe physical symptoms would be feeling like I have the flu multiple times a week. More recently I have had multiple days that I have not been able to get out of bed due to extreme body and joint pain and extreme fatigue. Physical symptoms also include extreme headaches, jaw and mouth pain, vision changes, numbness and tingling in my arms daily and slow healing from my 2 knee surgeries (and possibly re-injuried for a 3rd time)! I am not able to physically do activities that once where so easy for me. Getting out of bed and ready is a daily struggle due to exhaustion (no matter how much I have slept) and pain.
Perhaps the most diffiuclt symptoms to deal with are the nuerological symptoms that have signficantly impacted my daily routines, abiity to manage household tasks, multliple appointments (for Blake, myself and other children) and work. It is a constant state of "brain fog" (or in the Lyme world referred to as "Lyme Fog"). It is very difficult to manage daily routines and work with short term memory loss, confusion, dizziness, lack of focus and extreme fatigue!
I know that we are going to fight this together and healing is possible. Unfortunately, healing will be very difficult without the help of a Lyme Literate Specialist who specializes and understands Lyme Disease and co-infections. Blake and I both have co-infections of Babesia and Bartonella. Babesia is a malaria-like parasite that infects red blood cells. Bartonella is a bacteria that live within cells, is very resistant and find human beings very hospitable.
Treatment for someone who has had Lyme for years is much different than it is for someone who becomes ill shortly after a tick bite. I don't remember ever pulling a tick off of me (or Blake). Unforutately, the beautiful area we live in does not have Lyme Literate Medical doctors. The closest city is Seattle, WA (4.5 hour drive). So far my treatment has been initated by Blake's specialist in CA who is also versed in Lyme Disease treatment and my local functional medicine practicioner. My treatment mostly has focused on just getting my viral load down, healing gut infections, detoxifing and building up my immune system in preperation for more aggressive treatment (that I am now ready for). We do have a couple of well respected ND Lyme Specialists in the area that we feel will be very helpful in our healing as well. Sadly, none of these specialists are covered by insurance.
Funds raised will go towards Blake and I getting into local specialists (have been on waiting list for and scheduled for December),a top rated Lyme clinic in Seattle (approximately $30,000 for each person to have 2 weeks of evaluation and treatment), continued visits with PANS specialists, treatments not covered by insurance, medications, supplements, continued home remediation (still left to complete from mold), home equipment needed for treatment/detox and speciality help that is needed for brain and body healing.
As much as I hate to ask for help, my family is now in a position that requires it. We need to continue treatment desperately and are completely out of credit cards, savings and retirement is liquidated. There is NOTHING left and I can not work the hours I previously was able to due to Blake and my circumstances. Multiple family members, friends and co workers have advised me to try GoFundMe so here I am, humbly asking for help.
For more information on Lyme Disease or co-infections please visit the links below:
http://www.sophiahi.com/ (clinic in Seattle)
Documentary on Lyme