Brisan and Parker Stults | Living with Niemann-Pick Type C

Archive for November, 2010

Wanted to wish everyone a Happy Thanksgiving! We have many things to be thankful for.

Today the boys will get their infusions of DDVAP (Desmopressin) a few hours earlier so we can enjoy our Thanksgiving Lunch with family here at the house. Jennifer will be doing the infusions with the help of our nurse today. I plan on taking a little video of the whole process to share with everyone.

The bad news is we found out Monday that 1 of the 2 companies in the US that manufactures the Desmopressin has shut their plant down. That leaves a huge shortage and we were informed that the drug is on indefinite hold until further notice. That simply means to us that on Monday November 29th will be Brisan and Parker's last infusion.

At this time we don't have another option to help try to control their bleeding issues which leaves a big void of unknown and uncertainty in that area. You would think there would be an alternative drug we could use but that isn't the case this time around.

Enjoy Turkey Day!

Picture credit: http://www.businesspundit.com

Just a quick update for everyone. Brisan has been doing well. A few throwing up spells but overall he has been in good health considering all things.

Parker has taken a couple big spills forcing us to have him stay in his chair more often. We don't have enough bubble wrap to put up every where in the house! They both have been enjoying school which is a delight!

Duncan is still potty training. For the most part he is starting to get the hang of it. We have a meeting Friday to see if he will start school on his 3rd birthday in January.

We still are dealing with health insurance and trying to figure out the best thing to do. Having Brisan and Parker on Medicaid isn't the best option but realistically we are being priced out of the market for private insurance.