AZDonna

I didn’t like this game as much as Sunday’s.

Go Diamondbacks!

I like today’s game better than Friday’s. Go Suns!!

In recent posts, I’ve told you about Lauren’s sudden onset of sleep seizures and rapid decline in her physical strength. After a week in the neurological hospital, she was released to go home and complete a strong dose of antibiotics with plans to schedule an adenoidectomy and sleep study. During these past couple of weeks, she has had some slow progress and a significant reduction in the number of seizures each night (from 10-20 to 3-6 each night now). Her daytime strength has improved little by little and she is receiving therapy at home every day.

On Thursday, she suddenly had another bad day. After only 3 episodes that night, Carrie was expecting her to have a great day. However, when she awoke that morning, she was so weak she couldn’t even sit up. This puzzling situation really discouraged Carrie. Lauren got a little better through the day, and was walking a bit by afternoon, but it’s very hard to figure out what is going on when her condition fluctuates so much with no apparent reason.

Additionally, the ENT surgeon has backed off from wanting to do the adenoidectomy. Lauren’s disorder puts her at very high risk for anesthesia, and he feels the risk is not worth the possible benefit. He is convinced her adenoids are not the cause of the problem (night seizures). He feels just getting the swelling and infection cleared from her sinuses will help her breathe and make her healthy, and the seizures are not related.

I was watching an Oprah episode last week where they showed videos of people having night terrors, and they really resembled what Lauren does at night. Crying out, gasping, shaking, sitting up wide eyed, kicking and jerking, and going into a fetal position are similar to Lauren’s symptoms. However, Lauren can’t tell us what is going on in her little mind, and so diagnosis is very difficult. Add the fact that her disorder is so extremely rare and no doctors have any expertise, and it’s nearly impossible.

Summarily, we still have no good answers, and no end in sight to Lauren’s current condition. Carrie and Brian are holding up, but they sure appreciate your continuing prayers.

Robin, Megan and Steven are coming for a visit. They arrive tomorrow afternoon and will be here through the weekend until Monday evening. Megan is on spring break, but will miss one day of school next week.

I told them to pack their swimsuits. We are having 85° days here, which should feel very good to them after the cold snowy winter they have had. We’ll do some shopping, playing with the cousins, tour L.I.F.E. and Central’s new facilities, and catch up on gossip. Nathan gets to spend the night on Friday. I just wish Lauren was feeling well enough to enjoy their visit.

That’s where Lauren is going to be for the rest of the weekend. In fact, if the doctors have their way, she’ll be in-patient for a few weeks. Here’s the latest:

Lauren’s adenoids have grown back again. She has had them removed twice, but there they are, as big as life blocking her air passage again. One theory is she is having sleep apnea (Derek, you hit it!), and her struggle to get oxygen is setting off these seizures. Since this is such an obvious issue, they want to start there. She’ll have her adenoids out and see if that improves her sleep pattern.

When, you ask? That’s the $64,000 question. If Carrie had her way, it would have been yesterday. But nothing moves quickly in the hospital. The ENT surgeon has not even seen her yet. He is supposed to come in Saturday morning.

The other thing that is concerning Brian and Carrie is the doctors want to place Lauren into in-patient rehab after the surgery and keep her there until she is strong enough to walk again. But Carrie knows she can provide better rehab for her at home and at L.I.F.E., and is going to [try to] convince the doctors of that.

They’re not positive this is the root cause of all of Lauren’s difficulties, but it’s the easiest place to start. Following the surgery and full recovery, they’ll do another sleep study to see how Lauren is doing and go from there.

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.