Adventures in the EMU with Shawn

July 22, 2009 at 11:23pm

Ok. So I'm overdue updating about the whole process with Shawn. Shawn stayed overnight in the Epilepsy Monitoring Unity (EMU) on April 22, Jim and Mary Ellen went with him and took turns staying with him. The stay confirmed that Shawn still shows Electrical status epilepticus during slow-wave sleep (ESESS) in addition to his other seizures. The monitoring showed that Shawn has 97% spike and wave activity when he is in Non-REM sleep, which they said was as close to 100% as you can get. The doctors (In the EMU there are several who consult together, his doctor was one of the doctors consulting) determined to try a 10 day nightly High Dose of Valium to attempt to reset Shawn's behavior and regression.

My mom flew out to help take care of Shawn since we did not know how he was going to react to the Valium. Shawn reacted well and was able to go to school after we watched his reactions for a few days and my mom ended up taking care of me (another story). At first we didn't see any change in Shawn, he was still aggressive and had some break through daytime seizure activity. Then by the end of May (right about the time I left for DC), about a month after Shawn was off the Valium, he regained the skills he regressed in and his Aggression was better. Shawn started to be the sweet boy again!

June 15, Shawn had several absence seizures at school and was sent home for the day. I called his Neurologist and I told them that Shawn had been improving but now he was having several absence seizures in one day. The doctor said he wanted to get him back in the EMU. He was glad to hear that Shawn's behavior had improved and the regression seemed to have stopped but that they wanted to see his sleep waves. He said that I would be getting an appointment notice in the mail when they figured out when. We got the notice about June 20 that Shawn was scheduled for July 22.

We checked back into the EMU for an overnight on July 22, Mary Ellen and I went with Shawn this time. It took almost 2 hours to get through admissions and up to the unit, because they could not find Shawn's paperwork. When the doctor (not Shawn's regular doctor but a doctor who oversaw his care in the EMU in 2007) came to see us the first time he told us he was seeing seizures on the monitors that we weren't seeing (absence) and that he didn't expect to see much change in Shawn's sleeping spike and wave activity but he felt if we saw changes then the Valium treatment worked. Shawn was monitored overnight and as soon as he was asleep I saw the change on the monitor that showed his near constant spike and wave activity, at 3 AM I woke up and looked at the monitor and Shawn had normal wave patterns (I think he was in REM sleep), I was so excited it took me a while to get back to sleep. The doctor for this visit came in about 11 to tell us the results and that we were going to be discharged. He said that they were having trouble and were only able to download to midnight but what he saw Shawn still had significant spike and wave activity but they did not have a percentage because they did not have all the data. I told him what I saw at 3 AM and he said either Shawn was awake and I didn't know it or he was in REM sleep (which seems to be the only rest he gets). He said he believes the Valium worked because we saw a difference. He told us to follow up with Shawn's regular doctor in a few weeks to get the full report, and that one of the other doctors may say Shawn's percentage dropped and that even a 2% drop could be significant. About 30 - 45 minutes after we saw the doctor they came to remove the electrodes from Shawn's head. They I gave Shawn a quick shower and called the nurse so she would call our transport out of the hospital. At 1 PM transport still hadn't arrived and Mary Ellen went to ask the nurse if we could just leave. The nurse called someone from the floor to walk us out and we loaded our items in the red plastic wagon to take downstairs. Shawn just loved walking through the hospital with a red wagon caravan. We finally were on the road about 1:30 to go to Chick-Fil-A and get lunch.

Other things that happened today, during breakfast I moved our laptop to the cabinet by the window so we could eat on the table and after breakfast when I went to move it back to the table to get online and update everyone I discovered that it was wet. When I found the source of the water we discovered the ceiling in the hospital room had water dripping from it at a steady pace. I dried the outside of the laptop, shut it down, and disconnected the battery because I don't know how much water got inside (it was making a hissing sound like water on a hot frying pan). I'm hoping after it dries out it will be fine or that the extra warranty might cover water disaster beyond my control.

Also an old friend met us at Chick-Fil-A that I hadn't seen in maybe 8 years. It was good to catch up and unwind after the confinement of the EMU. I appreciate the work they do and that they learn a lot from the EMU stays but it is very boring being trapped in a room for a day or week. Especially for Shawn who has to stay strapped down in the bed. And his boredom can easily turn to frustration for the adults who get exhausted very quickly.

I'm glad to be home and am eager to learn the final results in a few weeks. The doctor did say if Shawn has another change where he get aggressive and starts to regress they can try the Valium again since it did seem to help. Shawn is an Epilepsy Mystery and I am thankful we are getting care from one of the best rated Neurological Hospitals in the country. 

Thank you to everyone for your prayers and well wishes, it helps me to know people do care.

Shawn with the therapy dog in the EMU July 2009

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Shawn Meadows, Photographer

Written by Tom and Mary Ellen, for Shawn's Member Spotlight for his Health Plan June 13, 2009

Thirteen year old Shawn loves to attend special classes at Kingman Middle School and receives additional after-school work with his DDD helper, Miss Aftin.

Shawn was a little over a year old when it became apparent that his development was delayed. Shawn was nearly two before he walked. At three, he began preschool and was diagnosed as Mildly Mentally Retarded. However, as the years went by, Shawn seemed to regress rapidly. It has since been discovered that, without medication, Shawn has constant seizures. Occasionally, these seizures can be observed, but most of the time they are internal.

Whenever Shawn and his Poppa get a chance to take pictures together, Shawn takes as many as he can, as quickly as he can. He’s actually pretty good, too! During a visit to the Phoenix Zoo, Shawn took a picture of a flamingo that earned a huge, yellow “Best of Class”ribbon in the Mohave County Fair, competing against normal-ability children. He sold his picture as well! His Poppa likes to tell people that he’s made more off of his one picture than Poppa’s made on every picture he’s ever sold—combined!

Shawn loves to sing and listen to music. As a matter of fact, Shawn learned to spell his name by singing it. Sunday morning church services are a special joy as Shawn joins in with the worship and praise music for all he’s worth. His sister and cousins take special care to help him in Youth Church, and everyone loves Shawn, “that cute kid in the hat who likes to sing.”

One of Shawn’s favorite friends is a professional entertainer, Earl Turner. Shawn has been going to his show since his seventh birthday, when he got to see Earl perform in a real resort showroom. Now, several shows later, Shawn gets recognized from the stage, and even gets handed the mike once in awhile. After one show, Shawn told Earl he wanted to sing on the stage. The show was over and the stagehands were setting up for the next show. “Everyone out of the way!” Earl shouted. “Shawn and I want the stage!” Earl cleared everyone off, and he and Shawn sang a song together and got lots of pictures taken. At the last show that Shawn went to, his sister, Alex, who had finally turned seven got to go. Shawn told Alex that she could be Earl’s friend, too, but that he was Shawn’s BEST friend.

Shawn loves to “read” using his Leap Frog Tag system. He’s read some of his electronic books dozens of times, and seldom misses any of the comprehension questions. He entertains himself at length and can recite several of the books from memory.

Shawn’s a sweet, loving child who is happy with his family, his school and his friends. His mom, Kat, says, “I’m the luckiest mom in the world! My son will always think that my dancing doesn’t look goofy and my singing’s always beautiful!”

Shawn with Earl Turner

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And here's what the results were from the EMU

April 23, 2009 at 10:47pm

Well, Shawn had his time in the Epilepsy Monitoring Unit at Barrow's Neurological.

He only had to be in the unit for one day (Thank goodness!).

The idea was to confirm or question the diagnosis of ESESS (Slow Wave Sleep Status Epilieptis). What the doctor there (Chapman) said was that they consider doing this "reset" treatment of dosing with Valium if Shawn was showing between 80 and 85% of his non-REM sleep. Shawn registered at 96-97% of these spikes.

Dr. Chapman did give some hope for us though, as he identified that he was very impressed at Shawn's level of functioning, as he sees kids with far less seizure activity with a lot less functionability. I guess it is kind of like a high revving sports car. He just runs hot.

Shawn was very well behaved in the room, considering that he had 23 electrodes glued to his head and those wires had him tethered to the wall. Having been through that process myself--he was marvelous. He sang his Sing-Star and watched Igor, and read his TAG books. Overall a very good hospital trip.

So Shawn is on his first night of being drugged out, and here's hoping that it resets his brain!!
Jim

Ready for bed in the EMU

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Shawn's Neurology Appointment

March 18, 2009 at 11:06pm

Well, Shawn and I drove to Phoenix today for his 6 month Neurologic Exam. We arrived a little early because we always have to fill out paperwork since his appointments are 6 months apart. While the receptionist was telling me what to fill out the doctor walked up behind her and asked me how he's doing. I told him, "not so good" and the doctor came out into the lobby (which was empty) to talk to me while I filled out the paperwork. I told him that Shawn has had behavior changes and has been more aggressive and agitated. That he is not sleeping well at night. That his teacher has noticed some regression in his ability to write his name and that he has regressed in his toileting during the day. The doctor then took Shawn and told me to come back when I finished the paperwork.

When I finished and went back the doctor was in head spinning speed mode. He told me that for most children with Electrical status epilepticus during slow-wave sleep (ESESS) they monitor them in the Epilepsy Monitoring Unity (EMU) to verify the condition, then they put the child on HIGH dose tranquilizers for 10 days to try to reset the brain waves then they monitor them in the EMU again. But because Shawn has abnormal brain waves all the time this treatment may or may not work.

Since it has been a year and 8 months since he was last monitored they want to monitor him again and verify if he still has ESESS, then he will be on tranquilizers for 10 days and he won't be able to go to school and will likely require near total care since he won't be able to even toilet independently. The doctor left the room almost immediately after telling me this to see how soon he could get Shawn into the EMU. He scheduled Shawn for April 22 and put him on the on call list in case of an earlier cancellation.

When the doctor was out of the room I sent Jim a text to say that we were going to end up in the EMU again and Jim called when the doctor came back in the room so I put him on speaker and so he would know when the doctor wanted to hospitalize Shawn, since he has to have a parent with him at all times while in the EMU. (Last time he was there we both took the time off and took turns sitting in the hospital and sleeping at a nearby hotel).

After the appointment, I sat in the parking garage for a while and cried trying to get through enough to drive. Shawn was sitting in the back with his Tag reading Spongebob to him. When I finally calmed down enough to drive, Shawn told me "Don't cry Mommy."

It was a very long drive home. Shawn played with his Tag reading different books and I thought about how they warned us he would have a seizure during the night that would cause him to regress. And I thought I'm not ready for this. I'm not ready to lose him.

Shawn December 2005

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