Weekend Update

>> Monday, September 29, 2014

Friday was a crazy day.

At 8:00am, we were not quite to Primary Children's with Bug in tow. After the nervous excitement of waiting to start a CBD treatment for Bug, being late made me ill. We were only 15 minutes late. But as soon as we started checking in....

Bug peed. A LOT. ALL OVER THE FLOOR AND CHAIR. His diaper was full, his sock and shoe were full; the boy peed A LOT. Glenn took him into the bathroom to clean him up a little while I finished.

I said to the lady checking us in: We had a urine accident, you might want to call someone.

She mumbled something about our insurance and then said: uh huh.

She never called.

I wiped up the mess and, with a handful of diaper wipes, they called his name.

Oh goodie!

He's in the bathroom, I said.

OK, we will wait.

When we got back to the room, sans pants, socks and shoes, the lovely Fumiko entered our lives. She described what was required from us, what we would get from them and how the world would revolve around reporting...not really revolve but she's calling on Friday.

Then in walked the good Dr. We talked about Bug, we talked about his seizures, the types he had most frequently and they types he had less frequently. We talked about his cognitive development (Bug's not the Dr.) and then they gave me the seizure papers that I was to use to detail his frequency of seizures. It's simple, straightforward and I screwed it up. Twice.

While we were finishing up, Bug pooped. Nice. We changed him, went to get the labwork, met some nice people whose daughter has LGS and then we headed over to the pharmacy.

Once we were outside PCH, we drove to Walmart to buy pants and gave him his first dose while in the parking lot.

What you don't hear after the administration is Daddy saying: You seeing pretty colors Bug?

After that, he fell asleep and promptly seized. Ok, so not a miracle out of the gate, but since Friday, only two seizures.  His possible movement disorder is definitely not as pronounced and hasn't had melatonin either.

We double the dose on Friday.


Make it stop.

>> Monday, September 22, 2014

I can't help but think that I am losing my boy again. His seizures today are so violent, so heartbreaking that I can't help but wonder how many he can have of those without it killing him?


I do not exaggerate: Lips blue, choking and gagging, full tonic/clonic, convulsions so hard I was sure he would break something. He has been laying down or stumbling all day. What is different? Why now? What the hell will it take for this to stop? Tell me. I will pay the price, I will make it happen. So much helplessness no parent should feel.

I can't cry, I will never stop. It just sucks.

I would say: can we start over with a new day? But to get to that new day, we have to have a night. And night has long been the enemy for him.

I want to scream, to throw things and punch things and make something broken, I want to wake out of this nightmare and have my boy back.

You see, we all go through days like this. We hate, we flail and then we gather ourselves up and go about it again, working to make it better. It may get better, it may not, but we have to try, you know?

We just have to try.


Last night sucked

>> Thursday, September 18, 2014

By 10:00pm Bug was still all sorts of hyper. Clapping his hands, jumping up and down, spinning toys incessantly. So, we broke out the melatonin.

Before you criticize, let's recap:

Bug has a Folate Autoantibody, Bug has Cerebral Folate Deficiency as a result, he does not produce enough serotonin on his own. Serotonin converts to Melatonin and that helps us sleep. Bug does not get enough to help him sleep.

He needs melatonin every so often. We try not to give him it every day anymore, now that he is getting the Leucovorin, he seems to need it less, but last night...MAN...did he need it.

By 11:00 it was helping him and he would drift to sleep. For about 10 minutes and then he would sit up suddenly and clap and chirp and be all....happy. It got old by Midnight.

At Midnight he fell asleep and at 12:10 he had his first seizure. Mild but there it was.

He slept next to me all night and he tossed and turned a little and if I moved AT ALL he would wake up and clap. At 3:30 he had another seizure, 10 second tonic.

4:45 he had another and again at 6:00.

It was a restless night. What was different you may wonder? Nothing apparent. This just happens. This is epilepsy. This is Autism, this is a non-verbal child that will never tell me how he feels. It may be he drank a lot of water, it may be he didn't get enough vegetables. We don't know. And living with that, takes adaptation and understanding and an amazing amount of patience. Especially at 3:00am.

He made the bus, and seemed to be happy. Nothing to do but see how the day unfolds and try not to think about it all the time.

Sign me up for nap.


What a Seizure looks like (Graphic Content Included)


Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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