Latest Nephrologist Appointment

Connor went to a new pediatric nephrologist today and it was a much better experience than the last time.

She works at UCLA research hospital and there was a resident and a nurse in the room with her at all times.

She was very good with Connor and he really liked her, even walking over to her and holding up his arms to be picked up.

They were very thorough, running new tests and getting a full family 'kidney' history from both sides.

She said she is very confident giving him a diagnosis of ADPKD (which was wonderful to hear)

She said if he had ARPKD he would also have a liver issue and a pancreatic issue, neither show up in his tests.

She said that if he gets lethargic and he has a noticeably distended belly, after taking him to the hospital, we should contact them right away.

She said the BUN levels for an infant are not out of normal range, as long as he's below 30 she's not concerned.

The phosphate crystals in his urine could be from an un-treated UTI, which are common in infant PKD patients but they are doing tests again to confirm that's what it was and nothing more.

She said there are three things we NEED to do for Connor as an infant with PKD:

1. Keep him hydrated.  Dehydration is horrible for his kidneys and will speed up the onset of the effects of PKD.

2. Do not let him get untreated UTI's.  She said that if he has a illness with a fever that requires a dr. visit make sure they take a urine sample to check for a UTI.  I need to assume every time, that fever could mean UTI and make them check.  (Connor has had a couple of odd spiking fevers in the last six months with no other symptoms and she said that absolutely could have been a UTI that his body was able to fight off.)

3. Monitor and watch his blood pressure.  It is common for PKD patients to get high blood pressure and in children they aren't checking for it and it many times goes untreated.  Hypertension kills more PKD patients than kidney failure.

She was very positive, VERY knowledgeable and very thorough.  The Lord knew exactly what I needed.  Every question I had she answered with competence and foreknowledge of whatever study, theory or concern I had.

We scheduled another appointment for 6 months from now and she wanted me to be sure it was AFTER I had baby number 2 so that she could do an ultra sound of that baby's kidney's too.  I hadn't even thought of that! :)

So we are going back at 10am on November 17th.

I am glad that our child (and future children) are being monitored and treated by a capable doctor.

The appointment this morning was a huge load off of my shoulders.  The Lord is so good!

I know He never stopped taking care of Connor or felt out of control and frustrated like I did and that is comforting to know.