Hepatologist and Epileptologist

We had double appointments at Phoenix Children's Hospital today.  In anticipation of this big day my mom drove up last night, spent the night and took Spencer back to Tucson with her this morning.  They went shopping for new summer clothes and made Easter cookies today.  Much more fun than hanging out in the gastroenterology and neurology departments.

We'll start with Dr. Miloh and hepatology, because that is where we started today.

Elliott gained 10.5 ounces in 2 weeks.  You would think that would be cause for celebration.  We were pretty thrilled.  What did the nutritionist have to say about that gain, which, by the way, is considered perfectly average?  She brought up the possibility of a feeding tube.  It's not enough that Elliott is gaining normally.  She wants him to gain normally and do all of his catch up growth immediately.  Never mind that it is acceptable for a premature baby without any medical issues at all to catch up by their first birthday. Never mind the fact that Spencer gained weight in the exact same way (slowly) and they are almost the exact same size at the same age and nobody ever thought a feeding tube was necessary for him.  Never mind that Spencer didn't make it on the growth chart until he was 9 months.  Never mind that Spencer didn't finish his catch up growth until he turned 1 (again- normal!).  Never mind that even now, at age 4, Spencer is pretty tiny.  Oh no, let's ignore all of that and expect a premature baby with liver disease and a genetic disposition to be smallish during childhood to just magically be in the 50th Percentile by next week. 

We have Elliott's 4-month well baby appointment next week.  I will be discussing this with our pediatrician because she was very supportive of Elliott continuing to gain normally and slowly doing his catch up growth over the next year, which based on his trend, he will do.

There was some good news from that appointment.  We had blood drawn on Monday.  The last blood draw we had was 3 weeks ago and Elliott's direct bilirubin was at 1.8.  Now, wait for it.............

it's .5!  Normal is .4 or less.  I'd venture to say that he is finally normal.

The bad news is that his GGT was still over 1,000 (down from 1,500, but still way higher than the 100 we want) and Dr. Miloh is once again talking liver biopsy.  That had been off the plate for a while, but a biopsy is really the only thing left to do to determine what is causing his liver enzymes to be all messed up.  We're going back in 2 weeks and 4 weeks and doing blood before the appointment in 4 weeks.  Pray, pray, pray that his GGT is down by a lot when we do the next round of labs.  Otherwise it looks like we'll be admitted to the hospital and Elliott will once again be going under general anesthesia.  Big boo.

(Tuesday night)

(Wednesday Night)

(Don't worry. We don't wash Elliott with Palmolive.  We do bathe him in the kitchen sink though)

(Thursday night)

After our high blood pressure inducing meeting with Dr. Miloh and nutrition we booked it over to the Neurology Department.

We met with Dr. Williams, who is an Epileptologist with Barrow Neurological Institute.  He has an M.D. and a PhD.  He's plenty qualified.

We spent a long time going through Elliott's personal history and family history.  He asked a lot of questions about different conditions that family members have.  He was fascinated by my adult onset night terrors, sleep walking and physically acting out dreams.  For a minute I forgot we were there for Elliott because he started asking so many questions about me.  All of my weird sleep stuff got so much better after Spencer was born either due to exhaustion or hormonal changes, otherwise I would make a pretty good case study.

Anyway.  We talked a lot.  He did a very comprehensive evaluation with Elliott.  He checked a whole bunch of reflexes, looked at his strength and was impressed with his strength.  And then he dropped a bomb.  A good bomb.

He said that he had reviewed all of the stuff sent over from the previous neurologist and based on the EEGs he said that Elliott never had seizures.  What the EEG showed was that his brain activity was not entirely normal and he had a greater tendency for the POSSIBILITY of a seizure, but there were no actual seizures. 

Can you believe it?

He told us to stop giving Elliott the keppra (we have to slowly wean him over the next 3 weeks) and that we don't have to come back.  He's considered a normal, healthy, regular brain developing kid.  He also said Elliott is totally fine to start getting the DTaP vaccine.

We were floored.  I have spent HOURS worrying about Elliott growing up with epilepsy.  And now I'm told that there were no seizures at all.  I'm thrilled.  And again, angry.  He's been on seizure medication for 3 months.  We haven't seen many side effects, but I'm sure it is better to not be on medicine than be on it.  Right?  We asked Dr. Williams why the neurologist said Elliott was having seizures when he really wasn't and Dr. Williams said that 1) it is hard to read the EEG of a newborn and 2) he probably just didn't explain it well to us.

This is exactly what the EEG reports say.  What do you think?

EEG #1- Abnormal electroencephalogram for bitemporal spike slow and sharp slow-wave complexes consistent with an epileptogenic focus in these regions.  Background is within normal limits.  Clinical correlation is advised.

EEG #2-Abnormal EEG for sharp wave activity bitemporal area, right more than left, consisent with an epilptogenic fous in this region.  Focus is less active than previous study.  Clinical correlation is advised.

EEG #3- Abnormal electroencephalogram for bitemporal spikes and left parietal spiles consistent with an epileptogenic focus and tendency for seizures.  Clinical correlation is advised.