Update on Brisan and Parker

On Saturday June 26th we had a fundraiser for Brisan and Parker. Northland Auto Body and Mrs. Darla Sartain organized a great event for the boys! It went super well and saying thank you will not even begin to describe how we truly feel! If you'd like a t-shirt we still have some available. Please send Jenn an email @ jennifer @ bripardun .com .

Brisan has had a pretty hard time this week. In the last two days he has had a couple gelastic  cataplexy attacks that has sent him once into the tile on the fireplace and the other one tonight into the ottoman. He lost both of the battles! I wanted to get a picture up here to show everyone but didn't get that accomplished this evening. His poor nose, lips, head, and whole face is just bashed up. He has scratches on his nose and his upper lip/ nose area is all swollen! Now some of you are asking “doesn't he have a helmet?” Why yes, yes we do but it doesn't protect the front of your face.

The next step is to see the neurologists and see what medications they can give him to help this sudden lose of muscle tone. Some of you might not know but this is apart of Niemann-Pick Type C and its progression. We really don't want to keep him in his chair the whole time while he is inside our home. He needs to be able to move around and keep working his muscles out!

Parker and Brisan both have had bleeding this past week (we all know Brisan has with all his facial injuries). They've upped their infusions of DDVAP to twice a week now. So we almost have a nurse in our home everyday during the week now!

Parker isn't doing well eating his food. We know the kid loves to eat but he just doesn't chew his food and can put Joey Chestnut (hot dog eating champ) to shame! The only problem is he starts to get bug eyed and starts choking / aspirating his food. At this point we can't just take his food away. He'll have that cruel situation to deal with later when his brain forgets how to do that. This is tough on us because we don't want either to happen.

Tomorrow (June 30) is the last day of summer school for the boys! Please keep them in your prayers. They aren't doing well except they aren't in the hospital which is a great bonus! NPC is progressing and although it is variable for every patient, it isn't fun to watch them lose the things you and I take for granted.

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  • Michael:

    Addi and Cassi are also having the gelastic cataplexy — it’s terrible and it increased a lot when we put them on the seizures meds. Before they weren’t having them and we noticed that with both the Keppra and the Frisium that it increased their spells A LOT.

    Our kids have them when they start laughing — they just drop. It’s horrible.

    I am not sure what is worse — the seizures or this cataplexy.

  • Hi Chris! Really stinks for these little ones. I think the dropping like its hot is probably a tad bit worse. Of course it happens at the worse time and the worse location possible! It’s pretty trippy when you first see it. Your more in amazement! Brisan is on Tripleptal and another drug for seizures and Parker is on the Keppra at about 2.5 ml 2x. We’ve been giving the cataplexy drug in the morning verse night time. For some reason it’s keeping Brisan from sleeping well.

    Hope all is well.

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