Munchausen's Syndrome or Factitious Disorder
Johnny was born Nov of 1990, a full term baby and miracle of in vitro fertilization. We had tried to conceive for years and longed to be parents. Seemingly healthy, he weighed 6 pounds7oz which seemed a bit small. Immediately he began vomiting both breast milk and formula. He was a very quiet baby and slept most of the time. He never cried to be fed and would sleep through feeding times if not awakened. This seemed odd. His growth was slow and he grew thin.
My pediatrician was on maternity leave and her fill in suggested that John might have failure to thrive and made me demonstrate how I held his bottle. I had worked in maternity for years and being a nurse I felt uneasy being questioned about basic mothering.
Oct 95 we were referred to a well known Children's hosp in the Carolinas. An endocrine workup showed lab tests positive for celiac disease. He underwent a biopsy of his small intestine to confirm the diagnosis, it was negative. Jan 96 a peg tube was placed in his stomach because of weight loss and vomiting. I reported that he would turn bluish around his mouth and slept up to 18 hours daily. I also reported fevers in the afternoons, spiking to 104. I noted his spotty red rashes that would come and go.
April 96, infectious disease consult. Joshua was admitted to the hosp for tests and a woman with a clip board came in and asked if Joshua was a planned pregnancy, if our home life was happy etc. She determined that I had "control issues" because I would make my baby eat. He was emaciated, what would any mother do.
I informed all doctors that our beautiful 6+ year old German shepherd had become lame, emaciated with huge stools and listless. The vet determined that he had a malapsorption syndrome and days later identified Spirochetes in his blood and stool. We were not told that it was Lyme but told every single doctor that the dog and Johnny illnesses seemed related. At that time, a Lyme test which was requested by us was positive...an Elisa with a 1:320 titer. Since a follow-up western blot was negative we were told "it is not Lyme disease." The dog died shortly thereafter.
I was beginning to have health problems even though I was in my early thirties and had been a professional athlete in great health. I ignored my symptoms and searched for a way to help our son. June 96. After seeing Johnny hold his head as if in pain, an MRI of the brain was done.
The radiologist had a nurse take Johnny out of my arms and asked me to sit down. "Your son has several lesions on his brain" were the words I will never forget. Cause unknown. Repeat MRI was worse. June 96 we took my sick dad and Joshua to Johns Hopkins for a second opinion. Johnny had a new heart murmur. Not really concern we were told. My dad got no answers and Johnny's diagnosis was probable post infectious demyelization syndrome. These troubles should decrease over time. We noted that each time Johnny got antibiotics for ear infections, he would turn pink, eat...real food and be active. Then he would relapse. We documented this and shared with all specialists on his case.
The feeding tube was eventually removed and Joshua had roller coaster health. We had an endocrinologist review Johnny entire chart because the specialists did not seem to be talking to each other. Dr Roberts identified all of the abnormal findings and summed up his history very well. At this time he had not met us, seen Joshua nor did he consult ANY of the doctors we had seen. He had us come in the office, met us and handed us the several page summation. It had been sent to every doctor we had seen.
Under recommendations was "TRIAL PERIOD OF FOSTER CARE FOR 6 MONTHS, with responsible adults."
He specifically noted that Johnny had high vitamin levels and wrote, "Mother is an RN and would have access to injectible materials." This was atrocious and we were stunned. The supplemental Pediasure Johnny was on was responsible for the levels.
Our pediatrician called Dr Roberts and said, "Why didn't you call me, I know these people." She stated that she knew our family well and had worked with me. She informed us to stay out of the hospital as our chart was flagged. We were trying to adopt a baby because we didn't dare try to have another, not knowing what was wrong with our son.
The adoption agency missed the letter or we would never have been allowed to adopt. The nightmare continued. The next five years were a hellish ride of fair and poor health coming in cycles. Suddenly my symptoms were beyond ignoring, blue feet and hands, icy cold, called Raynauds Syndrome started. I began getting confused and got lost in my car. I saw over 11 specialists and had no answer other than chronic fatigue, fibromyalgia and severe hypertension. I was getting desperate and kept telling every one the details about my son and the dog and my dad. No one seemed to listen. Then my blood pressure climbed to 180/120 on several occasions I was very thin and had lost over ten pounds. No answers. I told no one of the night terrors or seeing things. I did not need a psych consult. Our problems were very real and getting worse. One doctor suggested that I pamper myself and take some mommy time." I was furious. I went to Mayo clinic Jacksonville and got no answers. I then went to Mayo Clinic in Rochester and was there for ten days undergoing tests and seeing specialists.
They noted the worst vascular testing they had seen but offered no cause. Maybe it was an early autoimmune disease like lupus or scleroderma. "Time would tell." Such words were terrifying. Finally after much prayer and research, my family had a new test done for Lyme disease and some other serious co-infections carried in Ticks. A special series of Blood examinations was done by the highly published Dr. Joanne Whitaker, who most likely saved our lives.
Johnny and I tested positive for Lyme and babesia. I was hospitalized for a first degree heart block and abnormal rhythm as well as a small stroke.
We found one of only two doctors treating Lyme in our area and started on antibiotics. We returned to the Children's hospital with our lab results and they reluctantly treated Joshua with doxycycline for a month. I expressed that he was better but not well. They offered nothing more.
In approximately 7 weeks, Johnny could not sleep, his A and B average was crashing and his letters were backwards. He no longer knew his multiplication tables. We were again desperate.
We ended up taking him to a pediatrician, Dr. Jones, in the center of Lyme country in New Haven Connecticut, and after a year of IV Zithromax daily, his brain scans are improving and he is mostly well for the first time in his life.
I also see a Lyme disease specialist in Connecticut and my most severe health problems have resolved. We continue to take a day at a time and are still haunted by this insidious disease. We are committed to pressing toward research, legislation, awareness and public admission of this epidemic ... We are baffled that our country sends hundreds of millions of dollars to fight malaria overseas and turns its back on suffering, debilitated tax paying citizens. To this cause we are firmly committed.