Endocrinology Appointment

Justin had a follow up appointment with the endocrinologist this morning and she was very happy with his growth.  She said he's "grown beautifully" since his last appointment and he continues to follow his own curve.  That being said, he's still only in the 3rd percentile for his age so she sent us across the hall to have an x-ray taken of J's hand to check the age of his bones.  Bone wise he's right on track for his age at 4 years, 9 months so unfortunately we don't have a couple of extra years for additional catch up growth.  So we have a couple of options; we can be aggressive and start hormone growth therapy right now or we can give it some time to see if he has some catch up growth on his own. 

More than likely we will start hormone growth therapy because with his current growth he's predicted to only be 5'2.  And yes I know you're thinking "well Georgina you and Carl aren't that tall" but when I asked at a previous appointment what his height should be based on our heights she said 5'5, 5'6. It's clear that J's prematurity has impacted his growth, how could it not when he weighed only 14.5 ozs and was 10 1/4 inches long at birth.  Not to mention his small size was the culprit of his seizure in August. 

But because we have some time (boys typically stop growing at age 17) we're not in a rush to start it.  We have a follow up appointment in 4 months so we'll reevaluate then.  Even then we may not start it; the Dr. said we've caught it early enough and we really have until about age 12 to really worry so it just depends on how aggressive we want to be.  Ultimately it'll come down to J's health first and foremost, but I'd be lying if I said the social impact of his small size wouldn't be a factor in our decision.   

Hormone Growth Stim Test

Surprisingly Justin passed his hormone growth stim test.  The Dr. laughed and smiled when she showed me the results because she was shocked as well.  But J's growth levels, although not significantly higher than what they like to see, were above 10.  And his cortisol levels were really good. 

The Dr. said this doesn't rule him out for hormone growth therapy.  She wants to see J back in 4 months to remeasure him and if he hasn't had any growth then she'll do some additional work up.  This surprised me though because after speaking with the Dr. at Toledo Children's Hospital I was under the impression that J would only qualify for growth therapy if he failed the stim test.  But when I asked J's Dr. about that she said that there are actually 6 criteria and based on J's birth weight alone, insurance would more than likely cover the therapy.  There are a couple of other indicators but they're too scientific for me to get into. 

Endocrinology Appointment

Last week we saw the pediatric endocrinologist that Justin's pediatrician referred us to.  She wasn't as quick as the Dr. at Toledo Children's Hospital was to say that J had a hormone growth deficiency.  Even though he's very small for his age she clearly saw growth on his charts. 

 

However, the results from the initial screening performed at TCH were low so she ordered a hormone growth stimulation test.  In short, a 3 hour test on an empty stomach in which they manipulated J's blood sugar to check his hormone levels.  They drew blood every 15 minutes and even though it was through the IV it still took it's toll on J and mommy. 

 

We have a follow up appointment at the end of the month to get the results. 



Toledo Children's Hospital

Sunday morning we woke up to Justin seizing so we called the front desk and asked them to send an ambulance.  It seemed like forever before they got there, but the resort sent security and a medic who gave J some oxygen and the seizing calmed down a little.  Once we got in the ambulance the EMT's drew some blood and determined that J's blood sugar was low so they started an IV and gave him some glucose.

 

After an hour or so he started to perk up but by that point he had been poked and prodded so much that any time anyone came near him he had a major breakdown.  Seeing him all jittery and nervous as if he was hallucinating and seeing things was worse than seeing him seizing at the hotel.  The hospital staff kept looking at us as if I was somehow doing something wrong even though no one came in the room to see what was wrong.  Finally after an hour the Dr. came in, asked if this was normal and when I said no he gave him something to calm him down. 

 

Because of his really low blood sugar (28 when normal is 70) Justin was transferred to Toledo Children's Hospital for further monitoring.  Monday morning we met with the pediatric endocrinologist and he said that J had chronic ketotic hypoglycemia which is common in really small children and he was pretty certain that J had a hormone growth deficiency.  So he ordered the initial screening and told us to follow up with an endocrinologist closer to home.

Because of the seizures we also met with a pediatric neurologist who confirmed that the seizure was provoked by the low blood sugar so he didn't feel there was any neurological disorder.  However, J had a cat scan and EEG to rule that out and both came back normal.

 

Monday afternoon they stopped the IV and after J was able to maintain his blood sugar on his own we were discharged late Monday night.