Monday, August 31, 2009

So THAT'S Why He Won't Eat!

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!

Friday, August 28, 2009


Time goes by very quickly. Too quickly. My baby has turned into a vibrant two year old in love with balloons, Lightning McQueen, and puppies. And so we celebrated his birthday, with balloons and Lightning McQueen. There were, however, no puppies.

Happy birthday, baby boy.

Thursday, August 20, 2009

Small Steps

Nolan's receptive and expressive language is quite good. Not "good for a hard of hearing child," but simply good- for any child. He regularly puts together 3 and 4 word sentences, has far too many words to count, communicates his wants and needs (LOUDLY) and is able to follow 2 step directions.

We do have some concerns with his grammar and his verbal processing, though this may be due to age more than hearing status. Still, because he is at continual risk for language problems, I think we will definitely mention these problems in his IFSP goals this fall.

We have found a way to work with his ability to answer questions. Since Nolan will mimic the question rather than formulate an answer, our speech therapist has devised the following technique: Ask, Model, Ask (wait).

First, she asks the question, "Nolan, what is this?"

Nolan will invariably repeat, "Noh*, what is this?"

Then she'll model the answer by asking me the question:

"Mommy, what is this?"

"That is a frog!" I enthusiastically answer.

Then she asks Nolan again: "Nolan, what is this?"

He'll repeat, "Noh, what is this?"

Then comes the waiting. Instead of answering the question for him or accepting his repeated question, we simply look at him and wait. Finally, after much pause, comes the answer:

Then there is much clapping and cheering and running around in circles (Nolan's personal expression of "happy"). This process works about 25% of the time right now, so we're keeping it up and hopefully the success rate will increase with time.

His other "issue" is not uncommon for children his age. He gets his grammar backwards- instead of saying, "the bear has a ball," he'll say, "ball has a bear." Or he'll say, "Work at daddy" to mean "Daddy is at work." Right now I am simply repeating what he says, but in the correct order. If he says, "Asleep a Matt," I'll say, "Matt is asleep! Maybe he will wake up soon."

Otherwise, he continues to astound and amaze us with things we didn't know he could do. Our speech therapist told him to put a green circle on blue square, and he was a bit flummoxed. She backed the complexity of the request down a notch, and asked him to put the yellow triangle on the yellow circle. His little hand reached out and accomplished the task without hesitation. He managed to handle two shapes and one color in his auditory memory, and get them in the right order. WOW! Not bad for a kid who still hasn't turned two!

The "eating thing" is still plaguing us. His appetite varies greatly from day to day, so we never know if it will be a good eating day or a poor eating day. This morning he woke up and threw up until noon. He doesn't appear to be sick (slight temperature, but Nolan nearly always has a slight temperature). It is very similar to what he did in April, when he quit eating well. It is definitely something we will keep an eye on. He has his follow-up GI appointment on the 31st of August, and we will get our assignment to the feeding clinic at Buffalo Children's at that time. I've heard they can do wonders, so if there is no medical cause, we should be in good hands.

*Noh is what Nolan calls himself. Silly parents for giving him a name filled with low frequency sounds!

Friday, August 14, 2009

Like Camping, Minus the Fun

We headed up to Mercy Hospital in Buffalo for Nolan's endoscopy and 24 hour pH probe study. Since he is rather young and likely to rip the pH probe out of his nose, he would have to stay overnight for monitoring.

We left our house at 5:00am to be there in time for check-in, and then proceded to the pediatrics floor. I was concerned about being in a "grown-up's" hospital, but this really ended up working to our advantage. The pediatric unit only has 12 beds, and most of those were empty. This meant the nursing staff was very eager to take care of Nolan, who charmed them with his antics.

I was confident that the DuoCal was working, because we've been adding it to all his food/drinks and it had to be adding at least 200 calories per day to his diet. Plus, he's been eating better lately. They put him on the scale as part of the check-in process. He was last weighed about a month ago and was 23 pounds, so I was pretty sure we'd see a number like 24 pounds pop up on the scale.

Nineteen and a half pounds.

The boy weighs NINETEEN pounds. How in the world does that happen? Essentially, he's gained almost no weight in a year. I do have a hard time believing that he's lost four pounds in the past month. Perhaps the scale in the hospital was a tad "off," but I also have a hard time believing that it is off by four full pounds. So he's definitely lost some weight, despite the DuoCal and eating better. I can't explain the level of anxiety this causes: how can a child eat more and weigh less? We'll go back to the GI doc in a couple of weeks and weigh him on the same scale as his first appointment, and maybe he'll come up a little heavier. I can only hope.

Nolan and I were taken down to the surgical waiting area, and our GI Doc and the anesthesiologist came in. My hopes for a doctor who could come up with a comprehensive diagnosis were dashed when the GI doc asked, "now what are those in his ears? Earplugs?" She didn't remember who he was, and didn't know that he wore hearing aids. I gave a brief recount of his history to the anesthesiologist, then they took him back for the procedure.

A short time later, we were retrieved and shown pictures of Nolan's digestive tract. Everything looks pretty normal, except for some very minor irritation on his esophagus. There is nothing that can visually explain why he pulls at his neck, often refuses food, and fails to gain weight. Don't get me wrong- I'm happy that there is nothing obviously wrong, but how do you "fix" something that has no cause?

We are to make a follow-up appointment in two weeks, and if all of his labs come back normal and and his pH probe is normal, then we will start at the behavioral feeding clinic in the hopes that some occupational therapy will get him to eat more. Though I'm rather stressed, since he has been eating more, and simply lost weight in the process. My mind boggles.

Anyhow, he came out of the procedure in a quite chipper mood. He was lying in his little crib and asking, "Mommy go?" to the nurses. They gave him to me and disconnected his IV. The pH probe was taped to his face, and he had "no-no's" on his arms. They had also placed socks over his hands, since Nolan appears to be able to bend the laws of physics and can still reach his nose even when he can't bend his elbows.

Then Nolan and I waited. And waited. And waited. We had 24 hours to get through. A two year old boy, without the use of his hands, who was supposed to maintain quiet activities for a full 24 hours. The nurses really didn't have much involvement in our care- we were basically just camping out and waiting until the 24 hours were over. It really felt a lot like camping- no showers, no access to our usual diversions, and we got to sleep on a thin mattress in uncomfortable positions. Unfortunately, S'Mores were not allowed.

Nolan's "No-No's" kept his arms from bending

Watching Cars.

And STILL watching Cars....

I did have the foresight to bring along a DVD player, and my sweet husband went to the bookstore and bought me a few magazines. I think Nolan watched Cars about 15 times, interjected with a few runs of "Signing Time." Dennis headed home to take care of Matthew, and Nolan and I camped out. We found the playroom, and the doting nurses brought crayons and let us out into the general hospital area after evening fell. We roamed the halls and the maternity ward waiting area, and finally found the small playroom. I had to follow Nolan with the pH meter box the entire time, and was terrified about it pulling out of his nose. I did figure out a way to put the box over Nolan's shoulders, but that was a tad dicey since he's so small that the box almost touched the floor when he walked.

He finally fell asleep at 10:45pm. I fell asleep shortly thereafter. And we didn't wake until 6:00am- only two more hours to get through. We ate breakfast, played in the playroom, and the nurse came to pull out the pH probe. That wasn't fun, but it was fast and we were very ready to go home.

I have to call to make the follow-up appointment today, and we'll find out the results from the pH probe and the labs at that appointment. Only 2 more weeks of waiting to find out if all of Nolan's eating/weight issues are medical or behavioral. I hope these next two weeks go by quickly- this boy needs to "bulk up!"

Sunday, August 9, 2009

First Graduation

Nolan has completed the Baby Course of the John Tracy Clinic International Correspondence Course. Congratulations, little guy!

Thursday, August 6, 2009

In Which Nolan Disrupts the Space-Time Continuum

Just one word of caution for those intending on creating a flannel-board calendar. Your kids might like it. A lot. Which means they will have no actual idea about what you planned on doing that day, but will have a great time peeling and sticking shapes onto the board over and over and over...

You get the general idea.

Definitely go with Julia's white board concept- it is far superior for recording daily events!