's Dr. H Visit

[Guest guest]

here, 's mom. I too just read the People Magazine,

and thought the article on the family who adopted the 25 kids was

amazing. I normally try not to vent on this listserve. But do you

ever have days that you just feel so overwhelmed? I am so tired of

ensuring that gets her meds every morning and every night.

And what doctor's appts have we made, what still needs to be done,

have I missed anything? How is she doing? Who wants to take her on

a playdate, do they understand she needs to eat so often? And now

is selling Girl Scout cookies and is talking about wanting

to go with her troop on a 3-day sleepaway camp (it wouldn't be until

this summer and she will be going into 3rd grade at that point). I

am trying not to project!

Then we go to New York, brrrr... The great news is that she grew a

whooping ONE+ inch in the past 3 months!!! This after 3 yrs and 3

months on GHT! We weren't expecting that. Dr. Harbison originally

told us that she was putting as 's " target " height the height

she should have been had she not had RSS, which would be 5'7 " at

75%'tile. We laughed..... Well, is now above the 60th

percentile. Dr. H says that she can usually tell which parents skip

giving their kid shots regularly and which ones do not (my husband

won't ever let us skip a single one, even if we fall asleep -- we

have missed 4 shots in more than 1100 nights, thanks to my husband).

The other good news is that since adding the Prevacid in addition to

the Zantac, and starting the Miralax for the constipation, she

gained 2+ pounds in the last 3 months (after no weight the prior 9

months). She is now about 52 inches tall and 52 pounds at just

turned 8 years old.

Now the bad news. First on Thursday they did the Oral Glucose

Tolerance Test (OGTT). Not a fun one, bribery indeed was involved.

And the results showed " clinical and biochemical hypoglycemia " . She

was too low first thing that morning before the glucose was even

given. Then jumped way up with the glucose drink and within 90

minutes after, had already fallen way too low again (53). '

Then the next bad news, I guess just cuz it shocked all of us.

had a gastric emptying test last quarter of 193 minutes

(stomach normally empties in about 30 minutes or so). But since she

was constipated and hadn't gained weight, well, we (including all

her doctors) automatically assumed that this time, her test results

would be close to normal -- reflux was gone, weight gain happened,

constipation was gone.

Well, the GET showed " very little emptying over the 90 minutes...

using an exponential formula, her emptying rate was 2,575 minutes. "

This is VERY bad news for us, because of 's hypoglycemia. If

the food sits in her stomach, it can't convert to energy, and can't

help her if she is hypoglycemia. It also means that the solutions

we use in emergencies can't be truste (glycogen tablets, etc)

because if we give it to her but at that time, her stomach chooses

not to empty, her hypoglycemia will only get worse. The fact is

that there is glucose gel that we can put in her cheek. She clearly

has intermittent delayed emptying.

I am tired of all this crap. I know I look at her and she is SOOO

tall, and doing so well. But I just feel like every time we start

to think we are almost in the clear, bam, something else happens.

I have to remind myself that this is nothing compared to what others

are going through, both with RSS and with others. Our neighbors' 5

year old daughter Becca was just diagnosed with leukemia at

Christmas. Criminies, how can I complain.

Anyway. So much to talk about but I have gone on too long here.

The fact is that 's insulin sensitivity is undoubtedly due to

the growth hormone (all the studies are showing that this is a side

effect) --- the good news is that the studies also show that the

child's insulin levels will go back to normal within 6 months of GH

being discontinued.

What we will do about a 3-day sleepaway, I don't know. But we don't

have to decide now.

The other good news is that there is NO sign of andrenarche or

puberty for , yahoo. I was worried because last May her bone

age went from being 1 year delayed to only 6 months delayed. (She

just had another bone age done to check again). But Dr. H thinks

that the advancement for is simply that her growth is

getting so near her target height. If she were to go into early

puberty, it would clearly be a problem for her, but again, no signs

of it yet.

Thanks for listening. I just spent hours reading and summarizing

all the studies that have been published on RSS/SGA/IUGR in the last

year, and am going to include that summary in the MAGIC newsletter.

I will try and post it here as well, and the articles as usual will

be available through MAGIC free for members.

Bye for now.