I have a sick kid home today, well, not really sick, but not well enough to go to school. He’s been having chest pain which the pediatrician attributed to the amount of asthma medication he is on. It has gotten progressively worse over the weeks, and this weekend I decided that I was going to INSIST that he investigate this further. When he told me in September that C was healthy and the chest pain was nothing to worry about; I listened. I didn’t panic, but I didn’t dismiss it either. I watched, I assessed his pulse when he said it was bad, I checked his pulse when he was feeling fine. I monitored his bp also. No difference. At first I thought it was only on exertion, and while it may have started out that way it certainly isn’t anymore. It happens at rest now. So, overprotective mother that I am I called the Pediatrician the minute they opened this morning and insisted on being seen this morning. With it being a right sided pain I’m thinking of other possibilities besides cardiac but I’m not completely ruling it out, I’m possibly going to ask him to check his gallbladder (yes, I know, 14 is young to have that issue but it’s not unheard of). I just want an answer. I have a little experience with being dismissed as a Panicky Mom. I wasn’t blogging at the time but I think I have mentioned it a couple times before.
The summer of 2009 my (then) 8 y/o developed a circular rash at the base of his hairline on June 25th, I remember the date because I took a picture of it to note any changes (yeah, that’s the kind of mother I am, I go overboard). It was a Friday around 6pm. The more I looked at the rash the more I thought I could almost make out a Bulls-Eye. That’s when I decided that I didn’t want to take any chances with Lyme Disease. I didn’t want to wait through the weekend to get antibiotics so I decided to take him to the ER. In addition to the rash he had a VERY mild cough and sick eyes (all Moms know what sick eyes are; that look in a kid’s face that tells us before even the first symptom, that they are sick).
So, anyway, off to the ER we go. They put a mask on him and said that he most likely had Swine Flu. They said the rash was not a classic Lyme Disease Bulls Eye. I insisted on a Lyme Titer, which they did, but refused to prescribe antibiotics until the titer came back in a week in which case they’d call if there was a problem.
OK, so, I went home. TRUSTING these doctors.
Over the next couple weeks, the rash went away and a headache took it’s place. I brought him to the pediatrician. He diagnosed him with migraines; said to give him Tylenol.
I brought him back two days later when he developed photophobia (light hurt his eyes and head) and a worsening headache. Again, migraine diagnosis with a prescription for migraine meds.
Three days later back at the office. Severe headache, sensitive to light and now sound too. At this point, our doc sent us to the Children’s Hospital. We sat there for 5 hours and were sent home with a diagnosis of Cluster Headaches.
Two days later he developed double vision (not blurred; double). Back to the Hospital with an order for a CT scan from our pediatrician. Results: normal.
The next day back to the Hospital with an order for CT with contrast. ER doc sent us home without doing the procedure. Said it wasn’t necessary. B and I walked out of the hospital both crying. Him because of the pain and me because I was helpless to fix him.
Now at this point, my son is almost unable to function. His headache is so severe he can’t move. Light and sound, no matter how minimal, hurt him immensely. He wasn’t talking much because that hurt. I would sit with him all day and all night holding him; not knowing what I could do. I knew something was wrong, but the doctors weren’t listening. I cried because I had never felt so helpless. As a mother we always have the right fix; whether it be a band-aid, a bowl of ice cream or a hug. We can always fix our kids problems, but this time I could not.
At this point I had had enough. I called my pediatrician and said that someone somewhere had to do something. If he or the Children’s Hospital was not going to investigate further than I was going to go out of state to the Children’s Hospital in Massachusetts. This is when my pediatrician finally took me seriously. He said he didn’t want me traveling with him in his condition. He asked me to try the local Children’s Hospital one more time. He said that if they tried to discharge us from the ER to call his personal phone number and he would admit him under his care until we figured it out.
So I went in. I begged them to do another test, any test, I didn’t know what to ask them to look for but I wanted them to at least try! I had asked about Meningitis or Encephalitis on one of my previous ER visits and they said that without a stiff neck Meningitis was highly unlikely. After 6 hours they finally came in to do a spinal tap. He was in so much pain that my 8 y/o son saw the size of the needle and didn’t even flinch. He didn’t care. At this point all he could focus on was the pain.
So they did the procedure, now they explained to me that they were looking for Intracranial Pressure (ICP) of between 10-20. When they put that needle in and began aspirating his spinal fluid they determined that his ICP was 36!!!!!!! HE HAD MENINGITIS!
They immediately placed IV’s and began the medication to decrease spinal fluid to take the pressure off his brain. They admitted him and brought him upstairs where they proceeded to do more tests to determine the cause. You know what it was? LYME DISEASE. Months before when I had taken him in to the ER and they sent me home with NOTHING they had been wrong. It was Lyme Disease and because it was untreated it had passed into his spinal fluid and developed into Meningitis. The double vision was because the pressure was pressing on a nerve in his brain; he had 6th Cranial Nerve Palsy.
A week in the hospital, a PICC line insertion and 30 days worth of IV antibiotics later; he is better. All better. No residual symptoms except for a sensitivity to loud or high pitched sounds. We are VERY lucky.
After all was said and done, my pediatrician actually apologized to me for not insisting that the hospital admit him sooner. He told me that I’m not like most moms in that I don’t tend to overreact over the small things and even though he knew that I wasn’t typical, it still took my threatening to go out of state to get him to realize how serious it was. I think I have proved to him that if I’m saying there is something wrong it probably deserves further investigation. So hopefully today will go well.