Friday, June 6, 2014

An undefined form of Epilepsy

First, I'd like to apologize for the radio silence. As you can tell from the title, a lot has been going on. This is bound to be a long post, although it surely won't cover everything....I've been writing and re-writing this for weeks, so we will see what direction my writing takes me and then I would like to keep up with my posting.

Please be warned- I will be talking about what Epilepsy can look like, and if you are sensitive to hearing about children being really sick, please avoid the area surrounded in *****. It is important to me to "tell you like it is", but it isn't easy to write, and for most, it won't be easy to read. 

On April 4th, not long after my last post, Shrimpy's seizures came back. Her EEG the week before had been completely normal, so we decided, together with her doctors, to start (very gradually) weaning her off of the barbiturate. The first seizure was "just" focal- so just her face and mouth. I heard the sound her mouth makes when she seizes- a sort of clicking sound with her tongue, and I was instantly ripped out of my sleep. I took her out of her bassinet right next to the bed and held her and talked to her, while filming it for the doctors. Since it was a focal seizure, she was herself again afterwards- so I gave her her medicine as planned and tried calling the doctor. Unfortunately, it was busy, and while I was trying to nurse her and call them, the had a generalized seizure- so her whole body, including her lungs. As I watched her lips turning blue, I figured "fuck it" and called German 911. While I spoke to the operator, it stopped, but I had them come anyway in order to drive us to the hospital.


In the next two days, she had 7 seizures. They returned her medicine to its previous dosage, and for the next 4 days, she had no seizures and was able to nurse again relatively quickly. We went home and had one wonderful night as a family. The next morning, she had another, and we went back to the hospital, where they told us, as long as she didn't have another, that we could continue with our weekend. We had just arrived at a meet-up for the parents and children for the participants of our birthing preparation class when she had another. In the next 4 days, she had over 40 seizures, reaching a max of 15 in 24 hours. All lasted about 2 minutes, and all led to a bad oxygen saturation level. Some doctors wanted to see what her level would drop down to before administering oxygen- but Broom and I were not having any of that and always used the oxygen- because who the hell wants to test that?!?

Her personality was gone, her muscles had no tension, she was too weak to breastfeed, and could hardly stay awake. They took blood, and her face made the crying actions, but she couldn't fucking cry! She was basically in a coma- and it took her 45 minutes to drink a bottle. It was horrible, and we began to worry if our Shrimpy would make a comeback.


During our stay in the hospital, they completed a new round of tests, including an MRI. They discovered that the seizures begin focally and usually turn into a generalized seizure. Her heart, brain, and kidneys (she has 3- because she is cool like that), all show no signs of damage. Her metabolism tests show no signs of a disorder, and the genetic testing for benign infant seizures showed an abnormality on one of the genes, but both tested negative.

Diagnosis- undefined Epileptic seizures.

Not entirely unexpected, and it could totally be worse- but still shit in a lot of ways. But, we are dealing- and her meds are good at the moment. Currently, her last seizure was on the 17th of April. Next week, we will begin working with the doctors to gradually reduce one of her 3 meds- because 3 is a lot for a 4.5 month old.

I am scared shitless, but I know it is the right thing.

From all of this, I can tell you that I know the following without a doubt:

- Shrimpy is SO incredibly strong- she and I got our nursing back on track really quickly, and she is ahead developmentally ahead at this point- something I am super proud of.
- Broom and I are a solid unit- if anything, this has made us even stronger.
- Modern medicine, the health care system, and parental leave program in Germany enables us to have time to deal with this as a family.
- Relatively speaking, if Shrimpy "has" to have an illness, at least hers is a common one, controllable with medication. She can have a normal life, and can develop normally, too.

So, friends of the internet- I think that that is enough for now. I will try and follow up more regularly, especially since I have a lot to say on the subject of Epilepsy and everything else that is going on, so I hope that I can find time to write again soon.

Take care of yourselves!

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