Managing Editor's Note: We learned that Billy is back in the hospital, hobbled by his agonizing GI pain. Share your own story in the comments please. Or send us your submission to KimStagliano@gmail.com for review.
By Julie Obradovic
Over the last six years I have been privileged to meet some of the most outstanding human beings on the planet. One of them is a woman I'll call Jane Doe. Jane is a warrior mother in the truest form, a leader in the advocacy community and a parent of a severely affected child. No matter what comes her way, she faces it with grace, dignity, and love. I am lucky to call her a friend.
I have wanted to write about Jane and her son, Billy (not his real name), for a long time. Autism truly is a spectrum, and the severity with which it affects some children is often too casually dismissed. Billy is one of those children who is profoundly affected, now a teenager. Over the years since I have gotten to know Jane, her plight to help him has always hit me hard. I asked her to share a recent traumatic episode with Age of Autism to put a name and face on the children and parents who are fighting this fight everyday. To those of you going through the same thing, this story is also for you. To those of you in a position of power to do something about it, I beg you to do so. This is the reality of Autism for far too many families. Here is the story in Jane's own words....
The Medical Story
Billy is fifteen-years old and nonverbal with a long history of GI disease, immune deficiency, and more recently headaches. When not in pain, he is sweet, engaging and affectionate. He has not been doing very well since the end of September, mostly battling headaches on top of the usual GI issues. For the two weeks prior to this recent hospitalization, the topic of this story, Billy was very edgy, noncompliant, self injurious, and at times aggressive. In the last week before, he became more self injurious and aggressive; I was talking to his DAN physician or the staff almost every day.
Billy had a little congested cough (very unusual for him) in the two weeks prior, and when the cough ended, the aggression/self-injurious behavior increased. He kept biting/gnawing on his upper arms. He wanted me near him, but he wanted to dig his nails into me and scratch me almost constantly. At this point he would not wear clothes, and he would not get off the couch.
Billy has epic constipation (he is suppository dependent), reflux and chronic headaches. I know the behaviors associated with all of those things, and I know how to handle them and relieve his pain. This time I knew he was in pain; I just could not figure out what it was. Then he stopped drinking his elemental formula and water. So by Friday I knew there was no avoiding ER, because he was dehydrating.
We could not even get Billy to the car. He refused to dress and refused to leave the couch, let alone the house. I thought I'd never see anything more frightening than Billly's grand mal seizure in 2006, but this night was worse. The more I talked to him and explained to him that we had to get in the car and get help, the more upset and self injurious he became. He bit up his arms badly, and he gave himself two black eyes in the process.
I had to call 911. It took five paramedics to get him on a gurney, in restraints, and in an ambulance to get to our local hospital. At this point I thought the poor kid had appendicitis or something. I'd never seen him so out of control. The hospital got IV fluids going and ruled out a lot of things. CT scan finally showed that his small and large bowel were full of air, even though he did not look any more distended than usual. Soon after the CT scan, however, his belly grew very large and became very hard.
The local hospital transported us to Children's Memorial in Chicago, which is where we were for five days. Billy was in loose restraints Friday through mid-day Monday. He was just too aggressive and self injurious because of the pain in his belly. Diagnosis was ileus (bowel shut down) due to virus (the cold in the last two weeks).
Since Billy was not vomiting and began passing the air in his belly on his own, the hospital doctors decided not to intervene other than to give IV fluids and a little Tylenol for the pain. So you sit and wait for that air to pass; even with medication on board, it's pretty damn painful. Thankfully, the distention went down, and he seemed more comfortable on Sunday, but then suddenly his belly blew up again and we had to start over. That was pretty disheartening. The doctors at the hospital said that while passing all that air, another pocket of virus can open up in the intestine and cause you to distend again. By mid-day Monday Billy had a soft belly, was much calmer and back to drinking water and elemental formula again. So they took him out of restraints, and on Tuesday they removed his IV.
I've heard of other kids around the country experiencing this bowel shut down, and I've always hoped it would not happen to Billy. So I just lived through one of the nightmare scenarios I've been imagining in my head for years but hoping would not happen. We survived it, but it got pretty ugly. It’s so hard to watch your kid so out of his mind with pain. The really scary news is that they said this can happen again if Billy comes into contact with a virus. It strikes terror in my heart to think about it happening again. Just terror.
The RNs and staff on our floor at Children's Memorial in Chicago were excellent. They were great and let me call the shots much of the time. They really listened and responded to me quickly whenever I needed something or wanted to deviate from their protocol. Of course, the hospital sent the psych team, two psychiatrists who I'm sure meant well, but could only offer Risperdal. I explained that self-injurious/aggressive behavior is always an indication of that my son is in pain. I told them that I choose to treat the source of the pain rather than assume he's having a "psychotic" episode and give Risperdal. They wanted to come back the next day to give Billy a dose of Risperdal, so we could "just try it." I said no thank you.
Billy is at home resting now but is still in a low level of pain and very fatigued. We are working to get some diagnostic testing done, so we make some medication changes and hopefully get Billy some much needed and deserved relief.
The Second Story: The Neurologist at Children's Memorial
We ran into trouble when we asked Children's Memorial in Chicago to look at the bigger picture of Billy's health and to partner with our team of doctors to help him. He is scheduled for lumbar puncture and MRI next month in another state. I have thought since the end of September that traveling with Billy is going to be very difficult, possibly unsafe. So our out-of-state neurologist asked the neurologist at Children's Memorial in Chicago to consider doing the lumbar puncture and MRI in Chicago, because he felt Billy was not stable enough overall to travel.
We got stonewalled. A neurology fellow came and took Billy’s history. They did request records from our neurologist. The Children’s Memorial neurologist came and spoke to me. She had objections, and I was able to deal with most of those. I asked her not to deny the request until she had spoken with our neurologist. Doctors need to talk to doctors. On Tuesday she said she would call our doctor and come back to see me on Wednesday. By mid-day Wednesday, I had not heard anything, so the nurse began paging the neurologist. She never responded to that page all afternoon. At 4:00 in the afternoon, the resident came to our room to say that the hospital neurologist sent her apologies but could not make it to see us.
The resident began to say that there are lots of different theories about Autism, and that we probably don't all agree. Then she wanted to know if these tests were for research. I am a patient person, but now I was pissed. I explained that these tests were not for research; they were being done to determine treatment for my son. Then I said it does not matter which theory about Autism that any of us subscribes to; the fact is that there is a boy in the room with a long history of GI disease, immune deficiency, and chronic headaches who just suffered a health crisis requiring hospitalization. I don't care what any of us believes about the cause of Autism right now, I'm asking you to help us do some diagnostic testing so I can get the information I need to get my son out of pain.
At that point the resident kind of cracked, and said "I don't really understand the issues here. I'm just here to communicate the fact that your neurologist and our neurologist have been playing phone tag and have been unable to speak today. You are being discharged since your son is clearly doing better, and you are to call your neurologist and our neurologist in the morning and continue to try to get them to talk." Well, that plan sounded stupid to me. I called our neurologist’s assistant, and she confirmed for me that the only phone call they had received from Children's Memorial was to request Billy's records. So it seemed the phone tag never occurred, and I had been lied to.
I asked the hospital RN (who was wonderful) what my recourse was. She directed me to the Patient Relations Dept. We took Billy home, slept in our own beds, felt better and in the morning I started making phone calls. Once Patient Relations was involved people did start moving more quickly and being exceedingly polite. The woman from Patient Relations called late Wednesday afternoon to assure me that the Children's Memorial neurologist had been trying to contact our neurologist. Our doctor's assistant called me on Thursday night to let me know that the Children's Memorial neurologist did finally call late on Thursday, but I still did not know the result of that conversation. On Friday morning I got a call from the out-of-state hospital where the lumbar puncture and MRI were scheduled; they said that our neurologist was trying to move up Billy's procedures from March to February.
There was my answer. Children's Memorial was not going to help us so that Billy could avoid the travel. The neurologist from Children's Memorial called me late Friday afternoon to say that she would be unable to help. Her reason to me was that they did not have the lab needed for the immune work up of the spinal fluid. (My understanding was that the spinal could be shipped.) And she recommended that I work with local doctors instead of long distance doctors. Yeah, right. I later learned she told our neurologist that she was uncomfortable putting Billy under anesthesia so close to an ileus. Anesthesia drugs can impede motility, and that would be a bad idea after having just suffered an ileus.
Sevoflurane, the anesthesia we would use, does not impact motility. That is why sevoflurane is used for endoscopic procedures that include a pill cam study. The child's own motility is needed to push that pill cam through to get pictures of the entire small bowel. So if sevoflurane is used, anesthesia is a non-issue. I also learned she told our doctor that I was a problematic parent and very difficult to work with. Apparently an informed parent who advocates for his/her child is a "problem." Just for the record, I knew what I wanted and why I wanted it, and I was not shy about asking for it. I never used profanity or raised my voice. I was terribly polite.
From the time we made the request, it felt as though they were constantly looking for excuses not to help us. They just wanted us to be quiet and go away. Now I have to travel with Billy, and I'm very nervous. I hope he does not hurt himself or someone else. I will hold Children's Memorial responsible if any of that happens. Unfortunately this is the response I expected from mainstream medicine. I was not shocked by the outcome, just very disappointed.
I knew that asking them to help us do the testing so Billy could avoid travel was opening a can of worms. This is Children's Memorial in Chicago, not some tiny hospital in the backwoods somewhere. It could have been a learning opportunity for doctors to exchange information. But Children's Memorial was not interested in learning more about how to help these kids. Boy, does that not align with their mission statement. (HERE)
The Follow up
Eventually we made the long trip to see our neurologist across the country. The traveling was pretty difficult. My husband and I were worried about Billy having pain on a plane and hurting someone else, so we elected to drive. While traveling Billy experienced lots of GI pain, headaches, and then a yeast infection at the end of the trip. He bit himself frequently, leaving scabs and bruises up and down his arms and hands. He was aggressive with me several times, pulling my hair and scratching the back of my neck, arms and hands.
If we get information that leads to treatment that helps him, then it will all have been worth it. But it sure would have been nice to do the testing here in Chicago.
Julie Obradovic is a Contributing Editor to Age of Autism.