Articles I Have Written
- The Best Books for Kids with Hearing Loss
- Sleep Studies for Kids
- Adjusting to Hearing Aids
- Free Resources for Deaf and Hard of Hearing Children
- First Steps When Baby Can't Hear
- When Baby "Refers" on the Newborn Hearing Test
- Water Sports with Hearing Aids
- What is the Newborn Hearing Screen?
- The Best Hearing Aid Accessories for Kids
- Choosing Eyeglasses for Kids
- Great Hearing Loss Simulations
Monday, August 31, 2009
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
Happy birthday, baby boy.
Thursday, August 20, 2009
*Noh is what Nolan calls himself. Silly parents for giving him a name filled with low frequency sounds!
Friday, August 14, 2009
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
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!"