RSV(p) Seattle Children's Hospital

Elin had a seizure about a month ago when she had a fever from an ear infection. It was the first one she had had since July when we started her on Topamax. Myles and I were disheartened to realize:
1. She had not outgrown her seizures
2. The Topamax didn't control them completely
3. Fevers increase the likelihood of seizures
4. It didn't stop on its own and we had to use Diastat
We didn't call 911 because we were able to control it once the Diastat was administered and she seemed to bounce back OK.

Fast forward to this Friday. Elin started to come down with a cold on Thursday and developed a fever. Thursday night she and I both were up most the night. She was uncomfortable and I was worried about her having a seizure due to her fever.  Friday morning my mom came over to watch the girls while I taught class. I did express my concern about the possibility of Elin having a seizure because of her fever and my mom was nervous but prepared.

Well it happened and my mom did amazing. While I was at class Elin stopped breathing and my mom had to administer rescue breaths and call 911. The 911 dispatcher told my mom NOT to give Elin the Diastat even though my mom had it ready to go. Of course she listened to the professional on the phone and did as they advised. I arrived home as the medic car was leaving for the hospital. In my brief conversation with my mom she was visibly shaken but was able to tell me a little bit about the episode before I climbed into the aid car.

Elin was still seizing even after two doses of Diastat. By the time we reached the hospital she had stopped breathing on her own in the aid car and was still seizing. She was stuck in status epilepticus. We were rushed in and had at least 15-20 doctors and nurses waiting for us to arrive and they quickly started care. Elin wasn't breathing well on her own so they began bagging her and giving her supplemental oxygen. She was almost intubated but thankfully stopped seizing and began breathing just in time.

We were not as fortunate with the IV however.  Because they needed immediate access they had to insert an IO (that's an IV into the tibia). They drilled a hole in her leg into her bone. When I saw what was happening I almost screamed.  Elin has dealt with so many horribly painful things but watching them drill a hole in her body with out any anesthesia was almost more than I could bear.  By the time Elin finally came out of her seizure she had been given 10mg of Diastat and midazolam. That is a whole lot of Valium for one small body. They established an IV in her foot so thankfully they didn't have to use the IO.  We waited in the ER until we were admitted to the hospital at 6 pm. They ran many labs and various tests to check all sorts of levels of oxygen, electrolytes, sodium etc and they checked for viruses as well.

So in a period of about 1 hour I watched my child seize without rest, stop breathing on her own, have a hole drilled into the bone of her leg, be poked in every hand and foot for a possible IV point, had a catheter inserted and removed, had tubes stuck down her throat and in her nose, and watched the facial expressions of trained medical staff look frightened and alarmed at her inability to breath and stop seizing. Horrifying doesn't even begin to describe it. Myles arrived as she was coming out of her seizure and his presence was a god send.

Elin slept most the day recovering from her horrible ordeal and due to the effects of the Valium. Before leaving the ER her test for RSV came back positive. This was most likely the cause of her illness, fever, and subsequent seizure. Once in the medical unit we were relieved to have a place to stay the night that could monitor her oxygen and pulse. We had our own room as well which was nice. We found out a little later the reason we had our own room was because we were in isolation because of Elin's case of RSV. This is a very contagious respiratory virus and is very dangerous for babies and young kids. Every person who entered our room had to wear a mask and a gown. We weren't allowed to use any of the common areas. These are the places they have tables, refrigerators, microwaves, dishes, TV's, computers etc. Everything we brought in to our room was considered "contaminated' and couldn't be heated up or stored in a fridge. This made it hard to have food in our room for four days but we managed.  We were hostages in our room, however we really didn't want to go anywhere anyway and just wanted to stay by Elin's side day and night. The first night was terrible. I'm not sure if it was the residual effects of the medication or a combination of factors but Elin DID NOT SLEEP Friday night. Myles and I were up the entire night. We got to know our night nurse way too well.

Anya couldn't visit at all and she bounced around from my parents to home with Myles while I stayed with Elin.  We thought we would only be there one night but on Saturday morning they told us they wanted to continue to monitor her because she had had such a horrible seizure and she was still feverish. I escaped for a quick trip to spend some time with Anya and returned to stay the night at the hospital while Myles took Anya home for the night. On Saturday night Elin slept much better but she had a high fever spike at 4am- over 102.5. When the day nurse came in and mentioned how he was concerned with the fever spike I knew we weren't going anywhere yet. Sure enough the doctors came later that morning and we were told to stay for the afternoon and some one would check back in with us before night. Well no one ever did and we found out at 5:30 pm that we were not going home yet again. Myles went home with Anya and we had Susie come up so Myles could go to work in the morning. Elin and I had our best night of sleep on Sunday night and come Monday morning she was happy and bubbly (for a sick kid).

They were concerned with her fluid intake so I started feeding her less solid food and giving her more milk and water because I was worried they would keep me there another night. Thankfully she smiled enough through her hacking cough and snotty wheezes to get discharged. We returned home at 1 on Monday.
Anya was so excited to see Elin she didn't stop hugging her for several minutes. Elin returned the love with coos and pats for her sister. We are so happy to be home.

Why was this seizure so bad? If she had been given the Diastat like usual would it have stopped it or perhaps was this a different kind altogether? Why would the 911 dispatcher instruct my mom not to give my child the seizure stopping medication that is prescribed to her and part of her seizure plan? I plan to call 911 at my neurologists' prompting and ask them what reasoning they have for the advice they gave.





As much as I love Seattle Children's hospital it is the last place you ever want to have to spend time with your child.