The Waiting is Finally Over

10/20/2009

Last week, we finally got an answer to the question that we have been asking for no less than 5 years.  It was the answer that we thought we wanted and I’m so glad to finally know the truth.  But the information, so relieving at first, has left me confused, frustrated and maybe a little angry.
I’m not a doctor - I don’t even play one on TV.  But I’m a Mom and I think that should count for something.   Who knows their children better than their Mom?  No one.  Certainly not a doctor who sees a child once or twice a year for 15 minutes at a time.  Please don’t misunderstand me - I love my pediatrician.  I have recommended him to many of my family and friends.  He is caring and warm and smart.  I don’t envy him his job one bit.  But perhaps doctors could make their jobs a little easier by really listening and focusing on what parents and patients are trying to tell them.  Maybe it’s time to look beyond those infernal charts that they keep trouping out every time we raise our doubts.  Aren’t all of us a bit more complex than a sheet of paper?
I admit that O’s condition was easy to explain away, but it’s longevity alone should have prompted more action.   Kids are supposed to grow like weeds, right?   With each promise that his growth “was coming”, I couldn’t help but think it should have already arrived!  I brushed it off a few times myself and felt that the explanations that the pediatrician gave me made sense.  But I always had a feeling that something just wasn’t right.  He wasn’t growing.  I found it very strange.
O was a good sized baby and a fabulously chubby and dimpled infant, much to the delight of his grandparents.  He hovered around the 98th percentile for his height and everyone warned us that he was going to be a big boy.  “Just look at the size of those hands!“ people would remark.  “He’s going to be huge.”  He ate like a horse and was always happy.  But by the time he went to Kindergarten, he was as skinny as could be, walking around on impossibly tiny legs, needing suspenders to hold up his pants.  “What happened?” I kept asking the doctor.  “How could he go from the 98th percentile to below the 20th?”  I was told it wasn’t uncommon and that as long as he was continuing along on the same pattern (what pattern?  he wasn’t growing!) everything was fine.  The pediatrician kept reassuring me that he was just perfect and that he was thriving and happy and hitting all the milestones.  All of this was true.  Once O started talking he never shut up.  He was never sickly and was certainly growing developmentally and intellectually, he just didn’t seem to be growing physically.  But we plugged along, assuming that his body would catch up with his brain at some point in the near future.  Every summer I would say to O, “this is your year.  I can feel it.”  But it never was.  Back-to-school shopping meant buying the same size clothes as the year before, hoping to be able to find pants that weren’t ridiculously long for his legs.  I stopped telling O that this was his year, and started asking the pediatrician why he wasn’t growing.  But here was another wrinkle - he was growing, just incrementally.  His weight was increasing  faster than his height.  His face was certainly changing.  He didn’t really look like a little boy.  He just looked like a short boy.  And he was short.  The shortest one is his class since 4th grade.  That included most of the girls, just in case you’re wondering.  And that included MJ, O’s sister, younger by 2 years.  When they were babies, it was obvious that O was older.  When they got to be around 6, people started assuming that they were twins.  Then, the worst of the worst, a few years later, everyone assumed that MJ was older.  Man, that’s gotta hurt.
Middle School came for O and with it, his giant friends.  This is when I really knew that something just wasn’t right.  If you saw O with his friends, he looked like the younger brother.  The much younger brother.  And their feet!!  His friends were wearing virtual boats on their feet.  O’s sneakers were less than half the size.  There’s no way that this is normal.
So, I went back to the pediatrician with my concerns.  He said again that O’s growth “was coming”.  He asked us to be patient.  Told us he wasn’t even a little concerned.  When I asked him when he would be concerned, he said not until O was 16.  16!!  There was simply no way we could wait that long.  I pressed the doctor and said I wanted some tests done.  He agreed and set up an appointment with an endocrinologist.  She asked us millions of questions and measured O from top to bottom and sideways and ordered tons of blood work.  The information from those tests led us to another round of testing a few months later.  Which led us to the answer we got last week.  O’s body does not make the growth hormone.  He’s not growing.  Well, blow me over with a feather.  Really?  I think I’ve been trying to tell you this for years.
I’d be lying if I said we aren’t thrilled.  But the elation has given way to concerns.  Would it be better for his body to be able to do this naturally?  Without a doubt.  Was there any hesitation from us in agreeing to hormone treatment?  None whatsoever.  Talk about a relief!  The endocrinologist said that once the treatment starts, the results will be instantaneous.   She also said that there’d be some problems.  His body is not used to growing (duh) so it will hurt and most likely his bones will pop out of their joints.  Doesn’t sound fun, but it will be totally worth it.  She also said that he will most likely have to take hormones for the remainder of his life, which is a truly daunting fact.   Now I really shudder when I hear the term “pre-existing condition”.  Would any of these results be different if this deficiency had been identified earlier?  I don’t know.  His body still wouldn’t make the growth hormone and maybe they wouldn’t have started treatment until the age he is now, though I doubt that.   Maybe the only difference would have been that O would have been taller during Middle School.  But whose to say that this lack of hormones hasn’t affected other things, whose ramifications will come later?   We’re trying not to think about that.  
Though we don’t know what lies ahead with the treatments, I’m so relieved to have found the problem.   There’s no sense wondering about all of the “what ifs”, but it’s a little hard not to.  I wish that it didn’t take so long to get some satisfaction.  I don’t think it should have.  I wish that patients didn’t have to fight so hard.   And I hope that all the promises of “it’s coming” will finally come.   I hope the wait is finally over.

Comments

[Liz]

I can remember talking with you on this subject. I am so glad you have the results. I hope all will be well, and O is happy.

[Janet]

I certainly will keep you updated. Obviously, we are hoping for the best. Knowing him as you do, I'm sure you can understand that we are anxious and concerned as to how the treatment is going to affect him. The fact that it will probably be required for the rest of his life is a big pill to swallow as well. But the Doctor is very optimistic. She expects him to grow 6 inches the first year. That's pretty alarming. It will be very strange to see him tall. Believe me, he is so ready.

[Cyberchondriacmom]

Janet, poor O having to go through all these treatments. How traumatic for you all.
But, as you say, at least you have a diagnosis and know what you're dealing with now.
And it sounds like you have a good, positive outlook on getting through ths rough patch.
Please keep us updated on how O does, how the treatments work out for him....