Sunday, April 15, 2012

Alex's Hospitalization: Week One

As I have explained in previous blog entries, last month Alex was admitted as an inpatient to the Behavioral Medicine Unit of St. Anthony's Hospital in Michigan City. While he has been dealing with severe anxiety off and on for about six months, he had several recent episodes where he became extremely agitated and aggressive. Although the decision to hospitalize him was difficult, Ed and I were very pleased with the care he received at St. Anthony's. [The room where Alex stayed can be seen in the photograph on the left; his room was on the third floor and looked between the flagpoles.]

The first week of his hospitalization, the staff worked at trying to get him weaned off the three medications he had been taking--Prozac (an SSRI used to help his OCD and anxiety), Ativan (a sedative used to calm his outbursts), and Abilify (an anti-psychotic used to help Prozac work better and to ease his anxiety). Instead, they put him on Depakote (an anti-seizure medication also used to regulate moods), Valium (a sedative to calm his outbursts), and Invega (an atypical anti-psychotic to ease his anxiety). Before trying Invega, they gave him Risperdal, a medication commonly used in autism to treat aggression. However, he showed neurological side effects, so they took him off it immediately and gave him a medication to counteract the negative effects. Between withdrawal from the old medications and trying to get the dosage and combination correct for the new medications, the first week was a roller coaster ride. At times, he was very sweet and calm, and at other times, he reverted to throwing things and hitting when he became upset. Thankfully, the staff handled him quite well and understood that he couldn't help his behavior.

One day a staff person who didn't realize that Alex couldn’t eat foods with glutens or milk allowed him to eat cheesecake. After that, Alex had a terrible meltdown and another one the next afternoon. I don't know whether the cause was the cheesecake or simply coincidence, but he won't be eating cheesecake again anytime soon. Later that day, his behavior became so aggressive that they had to put him in four-point restraints (both arms and both legs) until the injection of Geodon, a sedative, kicked into his system, making him calm again.

When Ed and I went to see him the evening after he had been in restraints, we didn't know what to expect, but he was calm and pleasant, which was reassuring. Also, someone had helped him wash, shave, and put on clean clothes before we arrived. He looked pretty good for someone who'd had such a rough time earlier in the day.

During the first week, Alex had a pattern of having meltdowns shortly after lunch. The staff learned to be on guard around 1:00 because he seemed to get agitated at that time for some reason. During the week, visiting hours were scheduled in the early evening, but on weekends, visiting hours were at 1:00-3:00 in the afternoons. Knowing his history of post-lunch meltdowns the first week, Ed and I were leery about going to see him during the bewitching hour, but we hoped for the best. After having had a good morning (as we were told by the staff), he once again became agitated and aggressive shortly after we arrived at 1:00 on Saturday. He threw a cup of water, began hitting Ed and then a psychiatric tech who came to help, pulled a nurse’s hair, and began yelling nonsensical complaints, which the nurse explained was evidence that his mind was racing.

They placed him in an isolation room so that he could calm down. While it's not a padded cell, it's a small room with nothing other than gym mats on the floor and a window in the door for observation. Even though Alex was really upset, he obediently sat on the floor mat and managed to calm down enough for them to give him an injection of sedative. After the sedative kicked in, we were able to spend a few minutes with him but decided not to risk his wrath by overstaying our welcome.

That evening I talked with one of his nurses, who told me that he had a good afternoon and had remained calm, which was reassuring. They had decided that Ed and I should forgo our daily visit on Sunday to give Alex a day to adjust to his new medication schedule. She told me that they have to do this with elderly dementia patients, as well, because seeing family reminds them that they want to go home, and that makes them agitated. We trusted their judgment and their ability to care for Alex, so we did not go to see him on that Sunday, a week after he’d been admitted to the Behavioral Medicine Unit.

Thankfully, his nurses were terrific about providing reports about Alex over the phone so that we knew what kind of day he'd been having. One of them called that Sunday morning to make certain that Alex wasn't supposed to have any kind of milk. She discovered that lactose-free milk was on his breakfast tray this morning, and she took it away before he drank it, knowing his food sensitivity to milk. I explained that the problem isn't lactose intolerance for him, but a reaction to caseins, the proteins in milk. He doesn't digest them properly, and this can cause digestive and behavioral issues. In looking over his chart, she noticed that he'd had lactose-free milk for breakfast and lunch the two days he'd had terrible meltdowns. While that could have been coincidence, she and I agreed that he shouldn't be drinking any kind of milk, and she marked on his chart that he could not have ANY milk products to avoid any future dietary confusion.

When I called later that afternoon to see how he was doing, his nurse told me that he'd had a good day without meltdowns. The only bad thing he did was to throw a cup of water, so she made him sit in the "quiet room," the isolation room with gym mats on the floor. She said he was fully cooperative and walked there without having to be led. He sat there for a few minutes calmly and then was able to go back to his room without incident. This showed a huge improvement from the previous few days.

That evening, I spoke with another nurse, who told me that Alex had continued to be cooperative. She said that they had a new patient who was quite loud, and Alex had the good sense to leave the noisy day room voluntarily on his own, going back to his room and calmly reading a book instead. Again, this showed progress because he'd removed himself from situations that could escalate his anxiety.

Basically, the first week of hospitalization for Alex was one in which he alternated between his pleasant “Dr. Jekyll” personality and his aggressive, anxious “Mr. Hyde” counterpart. Fortunately, the medication changes made appearances of Mr. Hyde less frequent, and the improvements as time went on that first week gave us hope that he was adjusting well to the new medications. In my next blog entry, I’ll detail events of his second week of hospitalization.

“I am certain that God, who began the good work within you, will continue His work until it is finally finished on the day when Christ Jesus returns.” Philippians 1:6


Anonymous said...

My 22 year old son shows exactly the same behaviour as your son. I want to know if all autistic people should avoid milk products and gluten? I mean does consuming such products increase aggresion? Also is the new combination of medication helping Alex? Please help with your valuable advice because we've tried everything but nothing has worked so far. Thank you.

Pam Byrne said...

I'm so sorry you're having to deal with aggressive behaviors. The reason we put Alex on a gluten-free and milk-free diet was because tests showed that he had sensitivities to them. Some people with autism improve their behaviors if these are removed from their diet, but for others the dietary change doesn't make a difference. You could have your son tested for food allergies, or you could try removing glutens and milk to see if behaviors improve. Alex also doesn't do well with soy, which can make him agitated.

The combination of medications Alex is on (including anti-psychotics, sedatives, an SSRI, and an anti-seizure drug used to regulate his dopamine levels) have helped tremendously to control his anxiety and aggression. We are no longer afraid of him, and he generally functions quite well on medication. I recently wrote a blog entry entitled "Autism and Medications" updating the progress he's made while on these medications. Some have had to be adjusted over time, but he is much better than he was a year ago.

I pray that you are able to find the help you need for your son. If I can be of any help, please write me again. I know how hard dealing with an adult whose behavior is so difficult can be; I can completely emphasize with you. Let me know how things are going for you.
Take care,