We saw Dr. Wonderful (the GI doctor) today and were prepared for her to say that they couldn’t find anything. That Nolan’s disinterest in food was due to behavioral reasons and that we were going to have to go and see a kiddie psychologist and visit the feeding clinic. After all, his scintiscan was normal (minus some mild gastroparesis), his upper GI barium study was normal, and his upper endoscopy showed a visually normal esophagus (minus some minor irritation).
So we walk into her office, and she pulls out his file. Within 2 minutes, we knew why Nolan isn’t eating. She pulled out his pH probe study and said, “he failed, and he failed badly.” He’s been diagnosed with severe GERD, with an atypical presentation. Oddly enough, the first person to think that this was the problem was the speech therapist who did his feeding eval- she told us that he looked just like a “GERD kid.” So anyway, for those who want technical details, here are some numbers:
In a 24 hour period, Nolan refluxed 86 times. EIGHTY SIX. No wonder the kid hurts! Sixteen of those episodes were longer than five minutes in duration. OUCH.
The longest reflux period was 18.9 minutes when he was upright, and 36.3 minutes while he was laying down. That’s a long time to have acid in your throat.
The lowest pH reached was 1.2- pure acid.
He refluxes when he eats, he refluxes when he doesn’t eat. But he refluxes the most while he is up and moving, and not when he’s sleeping. This is why the scintiscan didn’t pick up on the reflux- that scan is performed with the child flat on his back. They do it that way because almost all kids reflux much worse when laying down- not our Nolan! Nope, he refluxes the worst when he’s running around, playing, and eating.
Nolan’s total amount of time spent in reflux was 25.4%. For comparison, normal children don’t exceed 4%.
They have a scoring tool called the DeMeester score- the top of the normal range is 14.72. Nolan’s score is 72.57
In other words, Nolan is refluxing, and refluxing BADLY. This is why he grabs his throat. This is why he avoids solid food. This is why he cries for milk and juice all day long, why he won’t gain weight, and why he fell off the scale upon starting solid foods (when he was nursing, lying down, he didn’t have too many problems). When he started eating upright, he started refluxing (this is the opposite of what most children experience, but if something is rare, Nolan is bound to have it).
The next step is starting a special formula of Nexium for children. Hopefully our insurance company will cover it- the “preferred” medication is Prilosec, but it isn’t as effective with severe GERD. We will keep up with the DuoCal and we should see some fast results. We do not need to go to the feeding clinic because Nolan’s issues are 100% medical. We go back to the GI doc in 3 months for a weight check and to make sure he’s doing well on the Nexium.
He should start to eat much better now that it doesn’t feel like battery acid is being poured down his throat every time he tries to eat. I’m a happy mama that we got this figured out so that we can help the little guy!
He also has a special GERD diet to follow. Some things will have to be eliminated from his diet: ketchup, tomato sauce, salsa, chocolate chip cookies (any chocolate, for that matter), citrus fruits, and a host of other foods from a long, long list. That Easter ham is not gonna fly this year! He can have most fruits and vegetables, breads, dairy, and lean meats. Luckily our diet consists primarily of these foods anyway, so we don't have too many adjustments to make- losing the spaghetti sauce and all tomato products will be the hardest, but we'll find good substitutes!
12 comments:
Poor Nolan! Do they think he will grow out of it or will it always be a problem?
We have no idea. Since we didn't have it diagnosed until recently, we don't have a history of it getting worse or better. His symptoms have only gotten worse as he gets older, so that's not promising. On the other hand, it can be managed with medication for now and that should give him some relief! We'll take it as it comes, I suppose.
Wow! I just keep thinking about the awful reflux I had while I was pregnant, and I can only imagine how awful it is for him! I'm so glad that you've gotten to the bottom of the problem though, and hopefully it will be much better for him soon!
Oh poor little honey! I'm so glad they figured this out and that Nolan is finally on a path to (hopefully) recovery from it all! Like Jen said, I too had horrible reflux when I was pregnant with Aiden, but I'm sure not nearly as bad as this. My throat burned just reading about it ... I just want to reach out and give him (and you) a big hug!
(1) Woohoo on a medical diagnosis!
(2) Poor, poor little guy!!! I hope he gets some relief and fast. I wonder if his discomfort has had any secondary behavioral effects. You've said he's a bit clingy -- maybe he'll branch out more when he's feeling better. Oh, give the kid a hug for me -- I feel so bad for him.
Aw , poor Nolan!! Hug him from me all the way from Greece?
I had really bad reflux as a kid ( no GI doctor , no exams back then ) and I was picky and throwing up all the time.
when I got to twenty , it got to really mild , and now it's almost non existent unless I eat any spicy food.I grew it off.Hope that's the case for Nolan.
Hug him!
WOW!!! Poor baby!
At least now you know and you know what to do.
For cryin' out loud, quit givin' that kid coffee! (JK)
My husband has reflux too, but (more typical) worse when he's horizontal. At least it isn't bothering Nolan as much when he's resting.
Praying for more comfortable eating for Nolan,
Julie
Boy, I'll tell you- we're glad to know what to do for it! He still had 22 reflux events while sleeping, so it is "better" but not as severe while he's prone. He also still has the gastric motility issues (food took too long to go down his esophagus- I didn't write about that), so they think the mild gastroparesis is legit. We just have to try the Nexium, see how it works, and then monitor him closely to make sure he keeps gaining weight/doesn't fry his esophagus.
What great relief you must feel having a medical diagnosis that is, for the most part, correctable! This was a particularly interesting post for me, especially all of the details. Those numbers are crazy!
X was diagnosed with severe GERD at the age of 2 months (which combined with his floppy esophagus caused blue spells). After a few long hospital stays, his medical team, involving doctors from many departments, finally settled on two medications, a special high calorie/low fluid diet and specific positioning during feeding and sleeping.
The good news is that, after almost two years, X is definitely outgrowing the reflux. He's able to cope with less medication and a wider variety of foods.
Good luck to you and Nolan - everything will get better from here!
So glad you finally have an answer!
Praise the Lord for answers! Can't wait to watch him pack on the pounds!
You brought tears of joy to me as I read your post. I know how it feels to live in the unknown and to fight a battle without knowing what your fighting against. Yeah! I can just imagine what he has been going through. Good on you for sticking through all the testing cause now you will have a healthier and happier little boy and of course your life just became easier too!!
Post a Comment