I’m sorry I have been M.I.A. My son has been sick since the holidays and I have been focused on his health.
Between Christmas and the New Year, my son caught a cold. He had a slight fever and some sinus issues. He slept it off over the course of about five days and got better. A week later, an hour after he came home, he said he was going to take a nap.
He woke up the next day at 7:30.
He took this 15-hour nap once a week for a month. It also became challenging to wake him for school, so he was tardy two to three times a week and missed one day a week for the next month.
In early February, I called my doctor’s office for an appointment to see if my son had mononucleosis.
I was able to get an after-hours same-day appointment with another doctor, so I took it. The doctor asked all kinds of questions to determine if my son was depressed or some emotional issues. He also ordered a complete blood count.
The results came back normal and my son was not depressed.
But my son’s sleeping started getting worse. He started missing school twice a week and his tardies became habitual. He was sleeping 16 to 20 hours a day and we could not get him up.
My son started to have chronic absences, although the school didn’t seem to notice.
I was concerned my son was getting too far behind, so I regularly emailed his teachers to let them know what was going on with him and ask how he could make up or learn the information he was missing in class, but only two of his teachers responded.
By the third week in February, I took him to a pediatric pulmonologist. She ordered a sleep study to see if he had apnea or an airway obstruction.
Two weeks later, the results showed he had mild to moderate apnea, but the neurologist felt nothing should be done.
Mid-March, we went to see our primary doctor. She ordered another blood test and I got her to give me referrals for an ear-nose-throat (ENT) doctor, neurologist and endocrinologist. She also looked into Kleine Levin syndrome, but my son only has two of the symptoms – excessive sleeping and alertness (and seems perfectly normal and healthy) when he’s awake, and we are not the same ethnic background of the majority of those afflicted, although that is not a strict criterion for diagnosis.
Meanwhile, we went for a follow-up with the pulmonologist. She ordered a neck X-ray to see if my son’s tonsils and adenoids were obstructing his breathing.
Our regular doctor referred me to a pediatric neurologist. I called for an appointment and explained the situation. I was told by his front office staff that my son could not be seen because he “didn’t have a medical or health reason.”
At that point, it had been 11 weeks of excessive sleeping.
Another friend tried to help me get an appointment with an ENT at Children’s Hospital Los Angeles. I was told who to speak to and that the staff would be expecting my call.
The front office staff told me my son could be seen on Aug. 25. I told them that my son would be dead by then, so that wouldn’t be helpful.
So at the end of March, we went to see another ENT whose staff was very professional. She checked my son’s adenoids and tonsils and reviewed the neck X-ray. Her assessment — my son’s tonsils and adenoids were “tiny” and wouldn’t cause any breathing obstruction.
Next we saw the endocrinologist. She said my son looked fine, seemed to be having a growth spurt and was right where he should be. His blood test results didn’t show any problems, but while we were in that appointment, our regular doctor texted me that my son’s blood test showed positive exposure to Epstein Barr and Coxsackie B viruses.
So we went back to our regular doctor to get a mono spot to see if my son had mononucleosis – which also came back negative.
We saw another neurologist who specializes in sleep disorders, recommended by a colleague of mine. He felt my son’s sleep study results were concerning and ordered a second sleep study to check for other problems and suggested our regular doctor order an arterial blood gas test to see if my son had too much carbon dioxide in his system that could indeed cause excessive amounts of sleeping.
So he got that test – not a very easy or painless test either – and the results came back normal.
The next week, he got the second sleep study. We went back for the results and my son was put on a CPAP machine.
My colleague also recommended a pediatric infectious disease doctor, so we went to see him in mid-April. He spent a lot of time with us and finally ordered another round of blood tests, including a lyme test at my urging.
Nope – everything came back negative.
Mid-April, I took my son to an acupuncturist referred to us by our daughter’s friend’s father. He has been giving my son herbal medication and does acupuncture treatments every other week or so. That is actually the only thing that has shown any progress. My son started to stay awake for longer periods of time — a first.
But my son’s improvement is much like Sisyphus — forever rolling the huge boulder up the hill, only to roll down, so his progress is so incremental, it is not really progress at all.
So in mid-April, I filed the paperwork to get my son out of school. Although he was already on a 504 plan (reduced schedule), he was impossible to wake in the morning.
I had to get our doctor to fill out the forms. When I brought them to the school district office, the woman who took my forms scolded me and demanded to know why I was filing the papers with eight weeks left in the school year.
My response – I was holding out hope that my son would get better.
Then she looked up my son’s record, attendance and grades. I told her he went from all A’s to now failing out of the seventh grade. She argued with me that he was getting a C- in language arts and that was not a failing grade.
I was shocked at her cantankerous demeanor and her lack of professionalism, not to mention, her hostility and extreme insensitivity to my son’s health and my feelings about the only choice I could make about his schooling.
She then demanded to know why the doctor signing my son’s form was not a pediatrician. She asked if it was my doctor or my son’s that signed the paperwork, implying that I was taking my son out of school for some illegitimate reason. I told her we see a family doctor who treats our whole family, despite my feelings that it was none of her business.
So now, six months since we started this journey, my son lost probably 15 pounds. He is 12. He still does not have a diagnosis. He is not in school, and today, he had an MRI to see if he has a virus in his brain. I hope the MRI shows some results, because if not, the next step is a spinal tap.
I am tired. I am frustrated. I am angry. I need help figuring out what is wrong with my son, and I need help to get him treated so he can get back to living the life of a normal 12-year-old boy.
I need the doctors to talk to each other. I need someone who is a health care professional to take control of my son’s case because I did not go to medical school. I need help with my son’s education to ensure he does not fall behind in school. I need help from a health advocate to tell me what I should be doing, what doctor to see next and who can diagnose my son and figure out a treatment plan.
My son has been M.I.A. for six months. I need help to bring him back.
Trisha Murakawa is a strategic communications and public affairs consultant based in Redondo Beach. Opinions expressed are not necessarily those of The Rafu Shimpo.