Friday, January 13, 2012

Diagnosis: Spoiled

I am so angry.

I knew going in that this test wouldn't show what the problem actually is.  We feed Jack dinner at 6 or 6:30, and his symptoms show up at 1 or 2 in the morning.  So, exactly how will a test that takes pictures of his esophagus while he's drinking barium show what happens 7 hours later?  It won't, but I'm a good sport so I agreed.

The radiologist said that it showed "a little" reflux.  I asked her if we could wait a while and take more pictures, because the problem happens so long after he eats, but she said that the barium wouldn't show up more than a few minutes later.

So the nurse from our doctor's office called today and said, "You should quit the Zantac, and continue to give low-dose milk of magnesia for symptoms, but the doctor thinks this is probably behavioral and that he'll outgrow it with age and gentle sleep training..."

And my head flew off.

"My baby is NOT spoiled!" I said.  "The doctor has known me for 8 years, and he knows both of my daughters, and NONE of my kids are spoiled.  I am a good mother, and I can tell the difference between a baby who doesn't want to go to sleep and a baby who is in pain.  My baby is in pain, and this has been going on for over a year, and if it's not reflux then why does positioning help?  Why does milk of magnesia help?  If it's not reflux then it's SOMETHING and it's dismissive and insulting to say it's behavioral."

Of course, in the middle of all this my phone dropped, so the nurse thought I hung up on her.  Thanks, AT&T!

God, it's so FRUSTRATING to go to the doctor and say, "it's getting worse, help my son!" and have them say, "it's all fixed, your baby just doesn't want to sleep."  I KNOW that he wants to sleep.  He lays down and tries, but it hurts him.  I can tell that he's trying.  The night before the test I ended up sitting up with him on the couch for an hour, after he'd been awake for an hour already, until he fell asleep, because laying down hurt him.

So we have an appointment (and they insisted that I bring BJ with me, apparently he has a reputation for being the calm, rational parent) on Monday morning.

I plan to spend the rest of the time between now and then trying to figure out what could look like reflux and act like reflux, but be something else - something that happens 6 or 7 hours after eating, when his stomach is empty.  Something that would cause him to arch his back and cough, cry, and try to crawl away from the pain.

Any ideas?


7 comments:

Bev said...

No ideas here but I just wanted you to know that I certainly understand your frustration and related anger. My thoughts are with you; I'm confident that you will persist until there's an answer.

Liz said...

This post pisses me off so much because I hate when doctors won't listen.
This sounds totally like reflux. I don't care what the doctor thinks. lol. My kids have all had varying degrees of reflux and my nephew still has reflux (he turned 1 in Dec.)
Maybe you need to see a pediatric gastroenterologist (sp?).
Beyond reflux I have no idea. I hope your little boy feels better soon. :)

Amber said...

Poor baby (Jack not mamma.) It makes me so mad when the dr. just wont listen. Who knows the baby better the dr who sees him for a few minutes or the parent who spends 24/7 with him? That just makes me go ugh! You are a GREAT mom and I dont think he is spoiled - he has plenty of love all the time. He gets all the attention that he needs! I know you will stick with this and find out what is going on!! Stay strong and find someone who will listen.

morganna said...

In dealing with babies in discomfort, this is the one thing I wish someone had told me: Keep a food diary. Much more helpful if Jack is on solids, but even if not, write down everything he ingested/came in contact with for 3 days and when he has episodes of screaming/pain. Once I realized I should do that, so much fell into place for me & my baby. Written down, the patterns were obvious. And if things are not resolved by 2, get the allergy skin tests. (Can't do it earlier) Doing that has turned my daughter's life around.

PS Have you considered allergies or sensory issues? That's what it was for my kids.

marie said...

I am a long time reader, but I never comment. However, I just couldn't not say how mad I am for you and your dealings with reflux. Everything you have described is reflux. Both of my kids had it and we dealt with the same issues. My son was on Zantac until he was 16 months old, but with my daughter we learned about a homeopathic treatment and were able to quit the zantac at 12 months. We get it from Vitamin Shoppe and it's called Nux Vomica. They are little pellets and our pediatrician recommended it. two pellets in the morning and 2 at night. 30 minutes before eating. Works wonders. Its also good for morning sickness, hangovers and general tummy upset. Good Luck!

Andrew said...

Since Chiari is on my mind and symptoms are presented differently by each person, here's a link to an interesting discussion :

http://www.circleofmoms.com/chiari-malformation-and-tethered-cord-kids/do-any-babies-with-chiari-1-malformation-not-exhibit-symptoms-527861

Sarah said...

I'm a long time reader, but haven't commented much.

Doctors totally like to blow off reflux though, in my experience. One swallow study is just that - a moment in time. If they are insisting on a medical test before they will help him more, they need to do a 24 hr probe of some sort.

Really though, what you're describing sounds exactly like reflux and I don't see why they are trying to say it is behavioral...ugh.

Good luck. I hope the appointment went okay.

Sarah @ reciprocalwaltz.org