Any other moms with GHD or Chiari kids?

[Vallere]

Hi all! I'm new to these parts!

Our middle child (who just turned 4 today!) was diagnosed as Growth Hormone Deficient with a Chiari 1 Malformation just over a year ago. He was a typical size at birth, was a great nurser, and grew just fine till about 9 months. He plateaued till about 12 months and started quickly losing percentiles. We went through a year or so of my pediatrician trying to convince me that he was small because my milk wasn't good enough, or that I should be forcing him to eat more solids instead of nursing so often. If he had been my first child, I might would have been convinced, but I have an older son who nursed just as much and never stopped growing, so I knew it wasn't my milk that was to blame. By the time he was 2.5 he was at the 1st percentile or lower for height and weight (despite eating like a horse) and we were referred to a pediatric endocrinologist for testing. He failed his stim test, so we had the GHD diagnosis, and the MRI to rule out a tumor showed that he has a 12mm Chiari, but thankfully he has no symptoms of that - we just have to have follow up MRIs every 2 years to keep an eye on things.

He's been on HGH injections for just over a year now, and we just recently had his new bone age which shows that in the past year he's progressed from 14mo old bones to 2.5yo bones! He's also made it back up to 25th percentile in height and is still in the "catch up" phase.

The shots are just part of our bedtime routine now, and I think at this point, the hardest part for me is the Chiari. We are supposed to keep him away from activities that could cause whiplash...do you know how hard that is with a super active 4yo boy who has a big brother?? How do I say "No hun, I know all the other kids are on the trampoline, but you have to sit here with me" or "Yes, you are awesome at summersaults, but when you try to do them off the couch it makes mama's heart stop" Ug. The really sad thing is that between our two boys, he is the most athletic. This kid is a natural...he was doing perfect summersaults at 2yo, can almost outrun his nearly-6yo brother, can walk a balance beam like it's a sidewalk...it's going to be hard later to limit the sports he can play, or tell him he can't ride the super fun rollercoasters.

The other thing that was hard for me was actually saying "yes" to the shots. We don't vax, and you can believe I looked up all the ingredients in the injections for his GHT. Some of the things I don't like...but to my husband and I, not treating him is not an option...just like we would treat him if he had diabetes or any other medical problem...so I've had to just pray God's protection over him.

So anyway, just wondering if there are any moms out there to commiserate with!

[beanma]

Vallere, just wanted to wish you well on your journey. I have a neighbor whose 20-something daughter has a chiari and it wasn't diagnosed until her late teens. The mom is a nurse, too, but it wasn't detected until she started having a slight problem with walking. As I recall she had a little limp for awhile. It never progressed to my knowledge and never caused any major problems earlier when she was an active child. I guess she had it all along and if they had known I'm sure they would have been worried like you are, but as it was she went on the trampoline and did the somersaults and all that with no problems. I think her later problems may have had something to do with rapid growth during puberty, but when I've seen her recently there's certainly nothing noticeable about her gait or anything. I haven't heard from her mom about any troubles either (although we're just friendly acquaintances). Here's hoping your ds's doesn't bother him either.