Campbell Update 10-19-09

Hello all! I want to first thank you for the outpouring of support for Russ, Campbell, and I. We are so blessed to have such incredible people in our lives, to have such incredible “prayers” for our girl, and we have felt loved, supported, and cared for every minute of this crazy ride.

I thought I would update you all, so many who have asked for information about what is going on now, with where we currently are and where the doctors are in finding out what is going on with Campbell. (Prepare yourself for medical jargon…) The doctors are currently leaning towards a few options to explain Campbell’s high blood pressure and frequent loss of sodium, potassium, and other electrolytes.

The first, and I guess what the “working diagnosis” is at this point, is something called Liddle Syndrome. Liddle Syndrome is an extremely rare genetic disorder that causes early and severe hypertension, as well as the electrolyte imbalance Campbell has had. Rare might be an understatement, actually. The majority of the team of Renal (kidney) doctors here at Texas Children’s has never come in contact with a case. We were told the other day that in the history of the hospital there have only been about 4 cases.

In order to determine if Campbell does have Liddle Syndrome, they have slowly weaned her off the blood pressure medications that she was put on to stabilize her blood pressure initially. At the same time, they have started her on the medication used to treat Liddle Syndrome. This is also used as a diagnostic tool, so if her blood pressure remains stable or even improves, it will indicate she does have this disease. Liddle Syndrome would be treated with this particular medication, as well as a sodium supplement.

We are also waiting for lab results to come back to rule out some other things. Some of these lab results, while not confirming Liddle Syndrome, can also indicate that it is probable.

Another possible cause is reflux occurring in the kidneys. This basically means that urine is going back up the tubes into the kidneys and forming scar tissue. This can also cause high blood pressure. The doctors want to do a VCUG, injecting die into the kidneys and watching what the kidneys do with the urine. They aren’t able to do this until she is off some of the IV meds, so they keep saying “later this week”. If that is the case that reflux is occurring, that could be a surgical issue, depending on the extent. It is also definitely possible that she has both reflux of the kidneys and Liddle Syndrome.

While we are still in the PICU and not sure of any kind of timeline, we are in a much better place than we were a few days ago. One of the doctors told me yesterday that we were out of the realm of “dangerous” and into the realm of “uncommon” and “very very uncommon”. I never want to be in the dangerous realm again. Campbell was able to start eating yesterday, has been keeping things down, and is much happier and more content than I ever imagined she would be laying in that little bed. She definitely has moments of frustration about being so confined, however she is being a trooper, has requested music (“mu”), done lots of bed dancing, and we have read about a million books.

We ask you to continue to pray as the doctors seek to find out what is going on with Campbell, so they might treat her to the best of their ability. We are so grateful for how far we have already come and know God’s hand has been so evident in that!

Sitting up for the first time and excited to eat breakfast!

Being just a little mischievous with her "gear"