AZDonna

Lauren has been having sleep seizures again, up to 40 per night, or as few as 2 or 3; and extreme fatigue during the day as a result. They have been occurring since their recent trip to S.F. to see the specialist. Carrie was hoping they were related to the flight (a change in barometric pressure can set off seizures in epileptics), but since they have not dissipated, they took Lauren to see a neurologist this morning at St. Joseph’s Hospital / Barrow’s Neurological Institute.

The doctor wanted to run several tests, including an MRI, full blood workup and a spinal tap. He decided to admit her so they could put her to sleep for these difficult procedures, and they will also keep her overnight to observe her during sleep. He wants to investigate several possibilities: her disease may be progressing, these episodes are really seizures, she has a serious virus, etc.

…just as I was writing the last sentence, Brian called with an update. Lauren’s spinal tap showed just a slightly elevated spinal pressure (normal = 18, Lauren’s = 19), so there is no concern and no need for a shunt. She was still under anesthesia, but was doing well. Children with Sanfilippo are very high risk under anesthesia because of their respiratory issues. They still had to do the MRI, so Carrie and Brian had not seen her.

The other news was the doctors were nearly certain these recent problems are not a result of her disease progressing. It’s too rapid a decline, so they feel it is something else going on.

Carrie said a huge number of doctors have been in and out of the room — all of them extremely interested in Lauren’s case. Sanfilippo is so rare, that doctors don’t get much chance to study it. Carrie said any and all were welcome as long as they were very careful not to bring any bugs in to Lauren. The more medical professionals become acquainted with her disorder, the more awareness is brought to it and possibly more knowledge and expertise in treating such children.

I’ll update when I have more information. Please pray for little Lauren, and also for Carrie and Brian. This is a stressful time.

You remember about a year ago when my business group at Intel was bought out by Marvell? We had 23 mask designers in our Arizona group who went to the new company. Over the next several months, one by one, mask designers left and went back to Intel. By the end of the first year, we had lost eight of those 23. We were down to 15.

Then the layoffs hit, and they cut eight more MDs. That left seven of us. Last week, two more resigned, and this week another two have given notice. I’m beginning to feel like I’m on “Survivor”. I wonder if I’ll win the million dollar prize?

Management is very concerned, to say the least. We have critical projects that need MDs, and preferably MDs with the kind of experience and expertise that we brought from Intel. Although I might not get a million, I do think it is looking like a very good time to ask for a raise. 🙂

Carrie, Lauren and three L.I.F.E. therapists are traveling to the S.F. area next week to visit a doctor who is a specialist on Autism. One of Lauren’s therapists asked this doctor to see Lauren, and he initially declined. But after hearing more about her, and about the center, he was intrigued and impressed and agreed to examine her and try to design a program for her. She has been losing ground on some of her development, and particularly her speech, in the last several months. In fact, recently she doesn’t even sing much anymore.

Some of the symptoms of Sanfilippo mimic the symptoms of Autism, and a lot of Autism therapies are used for children with MPS. Applied Behavior Analysis, or ABA, was developed to treat Autism, but has also been extremely beneficial for many children with other developmental disorders. Lauren responded very well to ABA for a couple of years.

They will fly over on Tuesday, and the doctor’s staff is going to test and work with Lauren for four days. Brian and Carrie have some business in San Francisco over the weekend, so Margaret and Kathleen will bring Lauren home on Friday night. She’s going to spend the weekend with Mia and Poppa. And Nathan and Nonna get to hang out together. Brian and Carrie return home on Monday evening.

Carrie said she will post an update on Lauren’s blog after they return (and correct any of my misinterpretations), but I wanted to let my readers know before the trip. Please pray for them, that this doctor may be able to help Lauren regain some of her words, and her music. When Lauren doesn’t sing, it’s a very silent world.