Gearing Up for Preschool

I can't believe summer is over, my tiny newborn is two years old, and preschool starts this coming week. Many families agonize over the type of preschool their deaf or hard of hearing child will attend. We don't have that worry, because we don't have many options. In our area, there are no oral deaf schools, no cued speech schools, and no bilingual ASL/English schools. There are three mainstream preschools in our area, and only one has a program for two year olds.

So for two hours on Thursdays, Nolan will be attending First Covenant's "Two By Two" program. I did this program with Matthew, and it is a wonderful program specifically geared to two year olds. As a side benefit, the parents get to go upstairs and have a snack and coffee during the program time (adult conversation is a very big thing in my world).


While I have done this program with Matt, this time it is different. For one thing, Nolan is my baby. My sweet, cuddly, still-missing-eight-of-his-baby-teeth baby. He's also small. Those jeans falling off his waist in the photo above? Size 12 months. The ten month old at today's softball game was the same size as my two year old, so his size makes me a little more protective. Maybe it shouldn't, but it does- he gets knocked over easily and isn't as "sturdy" as a lot of the other two year olds in his class will be.

And then I worry about how well he will hear in his classroom, with 11 other children, tile floors, and poor acoustics. No TOD, no FM System, and no one trained in educating or working with a child who may not hear them well at all with all the background noise.

I worry that the other parents will judge the whole potty training issue, which we haven't started because of some physical issues related to Nolan's PUV's. I dread the talk of toilet training and how everyone else has a great method that works lickety-split.

I worry that he will spit out his food at snack time, or spit up. Or choke and gag, as he sometimes does. That he will start one of his crying jags, which we now know is caused by a reflux event. I worry that the other teachers won't "get" that his eating issues and behaviors are related to a medical problem.

Some people have told me that Nolan starting preschool is no different than when Matt started preschool. But it is entirely different. On-a-another-planet-different. I'm not worried about him learning his colors and shapes, as he already knows these. Hey, he even knows many of his letters and that his name starts with an "N." No, I am worried about him, as a person. Will he socialize well with the other kids? Will he separate from me easily, or has he been scarred from so many medical issues in the past few months? Will he panic? Being the smallest one in the class, will he be babied too much?

We have an "orientation day" and I am going to meet with the preschool director (who personally teaches the Two-By-Two class) to discuss all of my worries. To show her his audiogram and explain that yes, he talks very well. But he doesn't have the concept of "yes," he doesn't answer questions without help, and he might not be "getting" what you have told him, even if he follows along with the other kids.

That first day is going to be harder on Mommy than it is on Nolan. I know, deep down, that he'll be just fine. The first few weeks might be rough, but he'll find his wings, dip them in finger paint, and get messy and be happy with the other kids.

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!

Upper GI Results

After all the "ear" stuff, you would think

Nolan would know where the otoscope goes. Apparently not!

The ENT office called me this morning to give me Nolan's Upper GI test results. From the radiologist's report, it is completely normal. This means that his eating issues stem primarily from the borderline gastroparesis, and not from some unseen anatomical anomaly. I'm not sure if this is a "good" thing or not- an anatomical anomaly might have been easier to "fix," but at least there isn't anything else wrong!

In the meantime, Nolan is eating more again. By "more," I do not mean "eating like a typical 2 year old." An example of today's ingested material is:

2 tablespoons of oatmeal
2 bags of Yogos
3 french fries

24 ounces of whole milk

2 cups of diluted fruit juice

The Yogos might take some explaining- we found a food that Nolan will eat, so we're giving him some Yogos to keep him chewing and swallowing. Some kids begin to prefer an exclusively liquid diet and don't want to chew anymore, so we're giving him these as "chewing practice" and not for any nutritional value.

He has spit up twice this week (like an infant- white milk) and has had some good eating days and poor eating days. We see the gastroenterologist on Monday and will have a better idea of how to proceed. Right now we're officially "dealing" with resolved PUV's, hearing loss, gastroparesis, and head lag. This new doctor is an MD/PhD and specializes in complex medical cases, and our ENT is hoping she'll be able to come up with a comprehensive diagnosis. Of course, it is always possible that Nolan has a bunch of unrelated, rare problems. But it is more likely that everything stems from a common cause. All I really care about is getting my kid to eat again, and to eat enough to gain weight. A 22 pound two year old is pretty skinny, and we can't find pants to fit him. He's in a size 9 month for the waist, and needs a size 18 month for the length.

We may be investing in suspenders in the near future.

Well, Actually...

We had our little visit with the ENT today to discuss the whole Nolan-doesn't-eat-anything issue. Since this has put us quite on edge (the total consumed today was 2 teaspoonfuls of yogurt in addition to some milk), we wrote down every issue that we've come across in the past six months (our "worry list"):

• Head lag (that's always been there)
• Problems eating
• Problems gaining weight
• Random "fevers" (99-100 degrees)
• Elevated AST and ALP (liver enzymes)
• Clutching his neck while eating or drinking
• Posterior urethral valves (that have been taken care of, thank God)

Our perplexed ENT did note there was head lag, and observed him pull at his throat while drinking.

Nolan pulling at his neck while drinking

I told her I didn't know what to make of all of this. That he wasn't eating, and if it was behavioral then we needed some help. Because he's getting worse, and not better with the current course of action. Then she asked what made me think it was behavioral. I told her that the scintiscan was negative. Her response was:

"Well, actually...."

Nothing good starts out with that qualifier. It turns out the scintiscan was negative for reflux. Yippee! It was also positive for delayed gastric emptying (DGE for short, or gastroparesis). It is borderline, because there are currently two standards used for DGE. One standard says that if only 25% of the stomach contents are emptied after one hour, then it is DGE. The other says that if only 30% of the stomach contents are emptied after one hour, then it is DGE. Nolan was at 27%, smack in the middle of those categories. By one, he has gastroparesis. By the other, he is borderline. She did diagnose him with gastroparesis, as he has symptoms consistent with the disorder and the test results indicate an issue with gastric emptying.

The next decision was whether we should be sent to neurology or to gastroenterology first. Since the head lag has always been there, we were lobbying for the gastro consult. The not-eating thing has our stress levels sky high.

She checked his weight (22 pounds, 12 ounces at 22 months of age) and agreed that we should see the GI doc. She also ordered a repeat of the liver function tests to see if those had normalized and an upper GI to be completed before we see the GI specialist. We had the liver panel redrawn today, so hopefully those numbers will come out as normal. It would be nice to wipe those off the "worry list."

Off we go to the GI specialist to find out what is going on with the little guy, and to get him eating again.

Feeding Evaluation

I took Nolan up for his feeding evaluation today. I hadn't received any instructions or paperwork on this little event, so I cleverly packed the boys some food - just in case. Turns out that was a good idea, seeing as how the parents are supposed to provide the food for the feeding evaluation.

Basically, both my boys sat at a little plastic picnic table and ate their lunch in a speech therapy room. For a medical appointment, this is about as fun as it gets. Nolan ate his typical lunch, which was 2 strawberries (cut up into pieces). Then he was done. Yup- that's about as much as the boy ever eats!

The speech therapist tried to get him to eat a piece of sandwich, and he pulled it out of his mouth. Typical Nolan behavior, and I'm glad the SLP was able to see him in a typical eating pattern. He did eat a bite or two of applesauce she brought out, and ate part of a graham cracker.

The really good news is that there is no swallowing problem. Everything that he chooses to chew up gets swallowed completely. Unfortunately, something is at play because most 21 month olds eat more than 2 strawberries for lunch. She looked at the "feeding symptoms" and a few other things (he snores at night, occasionally spits up) and said that his symptoms are typical of a kid with gastric reflux.

The texture aversion and "guarding" behaviors (not letting food into his mouth, or being very cautious with food) are common with reflux kids. I asked what we could do to widen his food repertoire, and she will be sending me some ideas with the written report. She cautioned me, however, that nothing would really work if there is untreated reflux at work. So we need to find out what is going on physiologically before we can treat the behavioral side of things.

The scintiscan is on the 29th, so we will be able to confirm/rule out reflux at that point in time. She also wants the ENT to take a closer look in his mouth, because he snores (apparently toddlers should never snore) and because his speech is a little nasal. Because of the hearing loss, we can't tell if his speech is nasal due to hearing levels (we've never gotten an aided audiogram) or because of a structural issue (like enlarged adenoids).