Lastest Medication News

Much better!
Image by Jacob Johan
This was taken Monday morning at the children’s ward, where she was taken after a short stay at the IC. Her right arm has the tube in case more blood was needed or medication had to be given. None of that was necessary luckily.

October 7th was a pretty ordinary Sunday. The kids had spent a night with my parents because we had a small social event on Saturday. During the day not much had happened. About 15 minutes after we had put everyone to bed in a cheerful mood, Robin started vomiting. Feline jumped out of bed to call us and to help Robin. But we couldn’t get any contact with Robin. She didn’t speak, didn’t look us in the eyes and could barely stand or sit.
When that continued for a few minutes, I went on to gear up for a trip to the ER. Patty wouldn’t have it though and called the ambulance straight away. By this time we had gone downstairs and Robin was lying in my arms, still not responding to anything, not moving, but definitely breathing and awake.
When the ambulance people saw her and heart our story, it was a quick decision for them to go to the hospital ASAP. Patty grabbed her coat and bag and I took Robin down. Off they went, sirens and all. That was a first for us, and still feels surreal.

In the hospital Robin was taken to the Children’s Intensive Care where they tested her blood and put her on the monitor. After a while she got better and responsive again, but was very tired and complained about a headache. Luckily she fell asleep pretty quickly after that. The pediatrician that had been called concluded that Robin had had an epileptic seizure, most likely related to the cysts in her temporal lobes that are the result of the congenital CMV infection. More about those cysts here:…

Whilst that preliminary conclusion made sense given what we knew and had just been through, the key thing for us was of course what this would mean for Robin? How often can we expect these things? Will the seizures cause brain damage? What do we do when it happens again? Etcetera.

When Robin woke up about an hour later (we’re now around 23:00) she was almost good ol’ Robin again. Awake, responsive, talkative. They took her off the IC and into the normal children’s war were Patty and Robin spent the night. The next day, Feline, Tijn and I went in early so that we could all be together for a bit before school started. Now at almost eight and seven years old, these events have a much bigger impact on them then five years ago when Robin was born.

When I brought them back to school, Dr. Vermeulen, Robin’s neurologist for five years walked in for a quick update. He outlined a short plan and gave a lot of assurance. No, Robin will not suffer brain damage from these seizures. The seizures have started at a relatively older age, are very infrequent (not multiple seizures a day), and are relatively mild. That was all good news. Robin will get an EEG next week, and we will discuss the results with the neurologist after that. Also, if it happens again and lasts for more than 1-2 minutes, we can use a liquid valium solution to calm Robin down and ‘get her back’ more quickly. In principle, she has to get out of this state by herself and there is no need to bring her to the hospital.

Still, the seizures can occur at any moment, so from now on we have to be a bit more cautious. We will also have to inform the people around us, like teachers, sitters, grandparents, etc. about the possibility that this may occur and how they should act. Now, with hindsight we think she had a first seizure in Italy eight or nine weeks ago. One morning she woke up and had vomited during the night. We thought it was strange, but didn’t read much more into it. That is probably when it happened for the first time.

All in all, with Tijn’s broken wrist and Robin’s seizure, we’re hoping 2012 doesn’t have anymore surprises. It’s is pretty amazing what the past 24 hours have been like, and how quickly things got back to normal again. Everyone is of course tired, but Robin will go to school again tomorrow. No reason why not after a very active, normal day today.

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