Message: Dear Dr. ......
In December 2015, I believed it was December 22nd, my husband and I brought our 10-year-old son, Ewen, into the emergency room at ...... Pediatrics. We explained in triage that he was having panic attacks back to back for the past 3 hours and now he was saying that he wanted to die. Triage admitted him and then he was given a room. By the time a Dr. came in, Ewen was asleep.
My husband, Mike, and I were beside ourselves with worry and shock. Ewen had always been our confident, popular kid. He was on the Gold travel soccer team, made straight A's in school and was a source of great joy in our family. He had always had an obvious love for life. He was the kid we did not have to worry about. But suddenly, late in December he had his first panic attack while playing his trumpet in a band concert. The next day I was called to pick him up from school because he didn't feel well and on the way back to the house he said he thought he had been bitten by a tarantula because he had been near a black spider on the play ground. This was such a strange thing to say that I almost thought it was funny. I didn't know it was onset of OCD and panic disorder. The next few days were filled with terrible anxiety and all he wanted to do was be in front off the computer screen so he could stay distracted. He was in terrible shape and my husband and I didn't know what to do.
When we brought him to the ER that night, we were hoping for some help. This was a kid who usually powered through illnesses with the bravery of a knight and who liked fevers because he got to stay home and play video games. Now he was he was in so much pain he was reduced to wishing for death, and it wasn't taken seriously at the ER.
This is what I wished would have happened: Ewen would have been seen quickly by a doctor and had a blood test done. This would have revealed that his mycoplasma levels were off the charts and that he was suffering from PANS, Pediatric Acute onset of Neuropsychiatric Syndrome. He could have started taking Zithromax that night and been better in a few days.
This is what happened: We were told we could take him to Behavioral Healthcare but that it would be very busy just a few days before Christmas and he would be with mentally sick adults.
We were horrified to be told to take our son to a mental institution. We thought it would be frightening and traumatic for him and that was the last thing he needed. And that was it. No tests, no nothing. Just go home or go to the psyche ward.
I feel like we were sent home from the ER with a son who had the equivalent to two broken legs, and told to bandage him up as best as we could when we got home.
Now, 9 months later, Ewen is on 500mg of Zithromax a week. If he misses a week he starts to get the symptoms back of anxiety and trouble swallowing.
Before we finally got to the PANS diagnosis, we did the intensive 3 week, OCD, CBT course and that was helpful. We also put him on Prozac and that was helpful but he was also plagued suddenly with sudden, severe tourette syndrome, and we wondered if it was the Prozac causing the tics, but it was the PANS. Once he started on the Zithromax we finally got our boy back. The light came back into his eyes and he could truly be happy and confident without tics, depression or anxiety.
The reason I am writing this letter is because if a child comes into the emergency room saying he wants to die and this is wildly out of character for the child and a very sudden onset, This should be taken seriously. I can't even describe the pain of seeing your golden child suddenly fall into a cloud of panic and despair. It was so outrageously confusing and there were NO answers. Shands let us down.
I have been told that ....... is not a supporter of the treatment of PANS or even the diagnosis of PANS and as the mother of a child who suffers from it and who clearly needs the antibiotics to function properly, I can assure you it is very real and very serious. We have even been told that a very standard treatment of PANS, which is IVIG, will not be supported by..............
It is very frustrating that my child has a syndrome that is so unrecognized by the ..........medical community. Thank goodness his pediatrician helped us through this and was able to diagnose him properly. The ........ specialists just addressed the symptoms, but now that he is taking antibiotics we are finally treating the heart of the problem.
What I ask of you today is to look more closely and more seriously at PANS, and to instruct the staff in the Pediatric ER to not shrug their shoulders at a very young child having a panic attack and saying he wants to die, but to ask questions and to look closely at medical reasons for the problem.
Thank you,
.......
Here are some notes I took the first few days of this accute onset, before we knew he had PANS.
Click on image to enlarge
Inline image 1
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