06/17/2026
Our forty-fifth post in a bimonthly series, Hard Truths: How the Health Care System Treats Complex, Chronically Ill Children, is now available below and on our website. I hope that by sharing Lulu's experiences others may learn from the challenges that she faced and have greater compassion for those who continue to suffer similarly.
As Lulu is prepped for her tonsillectomy and adenoidectomy (T&A), I am in contact with her care team and my extended family. My head spins as I receive advice about what to discuss with hospital staff. On our last visit to the gastroenterologist, the doctor recommended asking the ENT if it is possible to also have a colonoscopy performed and biopsies taken while Lulu is under anesthesia. Doctors recommended a colonoscopy with biopsies to stain for mast cells* during a May 2019 hospital stay, nearly two years ago. But Lulu has been too afraid of being sedated since then. The gastroenterologist suggested that the T&A presented an excellent opportunity to finally have this done. Having worked with ENTs on many occasions themself, they felt it should be relatively easy to do, especially at a major academic center. In addition, a colonoscopy would address some long standing concerns of family members that something else may be going on with Lulu’s colon given her periods of severe abdominal pains and prior abdominal X-ray findings such as: “moderate amount of stool throughout the colon. Scattered mildly prominent small and large bowel loops are noted, a nonspecific bowel gas pattern.” Taking their advice, I pose the question to the surgeon and wait for a reply as the doctor discusses it with colleagues.
Per the advice of others, I also inquire briefly about the possibility of conducting a lumbar puncture (LP), commonly known as a spinal tap, during the procedure. Lulu had an LP in May 2019 when she was admitted to another major academic center for suspected autoimmune encephalitis and psychosis. During an LP, a neurologist collects cerebrospinal fluid (CSF) to be tested for protein, cells, oligoclonal bands and antibodies that would be indicative of certain conditions such as particular forms of autoimmune encephalitis.
The findings from Lulu’s first LP were normal other than increased intracranial pressure of 34, which was assessed at the beginning of the procedure. There was a note, however, that the specimen was subpar for some of the tests performed on her CSF, such as the test for oligoclonal bands. A pediatric neurologist recommended a second LP in August 2019 during a stay at a children’s hospital, but Lulu would not agree unless the doctor permitted her to stay awake during the procedure. In addition, a neurologist recommended testing Lulu for MOG antibodies recently given her episodes of vision loss. However, Lulu received low dose intravenous immunologlobulin (IVIG) not long before being admitted to this hospital for the T&A. Because IVIG entails giving the patient donor antibodies, testing a patient’s CSF may not provide accurate results for months after an infusion. This fact along with the need for a neurologist quickly sets aside the possibility of an LP.
You may be wondering why some doctors on Lulu’s care team, extended family and I are scrambling to see what else might be accomplished other than a simple T&A while we are at this hospital? Getting a child to a doctor’s appointment let alone a hospital is one of the many ongoing challenges complex patients like Lulu and their families face. In some cases it is truly impossible for months, even years. All the while your loved one languishes at home deteriorating before your eyes as you helplessly watch. The same holds true as these patients age, only it becomes increasingly difficult due to their size and strength. This is why families try to seize every potential opportunity to make progress. With Lulu admitted to a highly esteemed university academic medical institution for a procedure requiring anesthesia, those offering me advice do not want to miss this opportunity to follow through with some items recommended since 2019. But neither the colonoscopy, LP or any other possibilities under discussion will take place.
Thankfully, the ENT informs me that the T&A was routine. I am very happy that Lulu was finally able to have the T&A performed, and I know that she will be proud of herself for overcoming her fear of being sedated, which as I have previously stated on several occasions in Hard Truths stems from her terrifying reaction to Haldol when she was 11 years old. But I am still wary. I know how poorly she was doing leading up to the surgery, and I have learned from the parents of children with PANS and PANDAS that neuropsychiatric symptoms can flare horribly following T&A for days or even over a week! I do not know what to expect, or, if this period of extreme difficulty occurs, when it might begin.
Fortunately, Lulu stays at the hospital overnight, per my request. What begins as a relatively calm evening soon erupts into sudden chaos. Looking back, I am not sure what precipitated the event, but in previous hospital stays, nurses with good intentions have wanted to use essential oils such as chamomile or lavender to create a calming atmosphere in the room, which has a completely opposite, disastrous effect in some hypersensitive patients like Lulu. At any rate, something triggered the following as described in medical records:
“She initially did well on the floor and was tolerating a regular diet with good pain control. Overnight, she had an acute decompensation in her behavior where she was violent towards staff and her mother, necessitating placement of four point restraints. A psychiatric consult was called and they recommended IM thorazine or PO Benadryl if patient's behavior remained dangerous to others. She was able to be calmed down without medical intervention.”
This episode was very eye opening I believe for the hospital staff. They immediately became far more compassionate and could not imagine how exhausted I must be after getting an inkling of what Lulu and our family has been battling for over two years. The social worker who sees this as a medical problem urges me to pull any strings possible to have Lulu transferred directly to a hospital that can address both her medical and psychiatric needs. Knowing that is near impossible and afraid to take Lulu home, out of desperation I request a psychiatry consult in the hopes that Lulu might be admitted as a psychiatric patient until she is more stable, and I am told at the very least a psychiatric consult will be done. A hospital administrator arranges a hotel room for me that night at a hotel next to the hospital and insists that I go get some sleep.
The next morning I am eager to see Lulu. I know that last night may have been very challenging for her because of the unwanted separation anxiety that PANDAS creates. I cannot begin to imagine the bizarre feeling that she has dealt with for two years of being unable to be separated from me while at the same time having no desire to be around me 24/7. And when I return, she is not happy in the least that I left her overnight. It is only the second time since January 2, 2019 that I have spent the night away from her. It’s now February 26, 2021, and I soon learn that this will be the date of Lulu’s discharge from this hospital. This occurs despite the very reasoned pleas from my sister who spoke to doctors at this hospital over the phone and attempts by other family members to access further care for Lulu at this institution. My sister Nicole even expresses the entire family’s fear for Lulu’s safety and mine if she is discharged at this time. But the earlier promised psychiatric consult never takes place. Instead, they give Lulu oxycodone and Benadryl, kindly offer us an ambulance ride back to our home, which is hours away in other state, and tell me to “consult her specialists.” A few weeks later I receive a bill for thousands of dollars to pay for the ambulance.
📸 PHOTO: The day that we left for the hospital, Lulu had a horrible flare of neuropsychiatric symptoms completely out of character and beyond her control, causing her to break many items in our home. When the episode was over, she made this to do list driven by her OCD to "fix" or discard items contaminated by her flare of symptoms.
* Channapragada, Theja V et al. describe the range of symptoms MCAS patients exhibit and recommend that gastrointestinal mucosal biopsies with specialized staining for mast cells be conducted in all suspected cases of MCAS during a recent presentation at the American College of Gastroenterology 2025 Annual Meeting. The American Journal of Gastroenterology 120(10S2):p S958, October 2025. | DOI: 10.14309/01.ajg.0001145392.27788.33.
