Four (and Five) Year Old Shots

Nolan was overdue for his four year old shots - he'll be five in August and we need to get all of his immunizations in before he starts school. Fortunately, a really wise mama-friend suggested that I ask the nurse if we could do all of the immunizations at once - otherwise, we'd be back in six weeks to get the 5 year old series!

We walked into the pediatrician's office and the nurse agreed to give him both sets of shots. Might as well - the trauma of two "shot" appointments is more than one appointment with four jabs. Nolan, of course, was not having any of it. The two of us tried to hold him down for the shots, and we were unsuccessful. It is amazing how strong a 32 pound child can be! The nurse went to get assistance, and Nolan yelled after her:

"You are all called POOPY!"

It took three adults to hold him down, and he actually got 5 jabs because he moved at the wrong moment and the nurse missed one, but thankfully it was all over fairly quickly. Nolan was absolutely enraged, and I had to drag his howling little body out of the pediatrician's office. He promised revenge to everyone wearing a white coat:

"One day I will have a car and I will drive away and I won't let you COME with me! I will drive away from YOU!"

I took him for ice cream as a reward, and he limped around the mall. This is sort of funny, because the shots were in his arms and not his legs - he's good at drama.

He's doing fine this morning, though the DPT injection site is quite sore. Hopefully he'll feel better by the weekend.

3 Year Old Well-Child Visit

Nolan turned three in August, but we're just now getting in for his well-child visit. Visits to the pediatrician are generally unhelpful, since we only see them for the required vaccinations (we see his ENT nearly every month; the pediatrician, once per year). We haven't seen Nolan's actual primary care provider in over two years: the problem with a group practice is that the child is punted to any available medical professional, which means we have to re-educate the staff on his history every time we visit.

The lab techs came in before the nurse arrived, and poked his finger for blood. This was not a good way to start off the office visit, since Nolan was understandably upset after this procedure. They weighed him (30 pounds!!!) and measured him (36.5 inches), and then the nurse asked the question.

"Have there been any updates since your last visit?"

I took a deep breath and said:

"He had a sleep study that found severe obstructive and central sleep apnea and recurrent ear infections. He had a tonsillectomy and adenoidectomy in April, along with his third set of PE tubes. Then he had an 8 week long ear infection that wouldn't clear and they cultured it and it was fungal, and his tubes fell out. Then he had another sleep study and his obstructive apnea got WORSE since the tonsillectomy so the ENT did a bronchoscopy and found severe laryngomalacia. He had a fourth set of PE tubes placed in October along with the bronchoscopy. They want to do surgery to correct the laryngomalacia, but won't do it until we verify his reflux is under control. So they did a pH probe in November and he failed it and they diagnosed him with laryngopharyngeal reflux disease.* So now they've added Zantac and we are going to do another pH probe next week to see if it is helping. We don't know what to do if he fails it. Oh, and his feet turn out when he runs and he trips and falls a lot."

The nurse smiled and left, then the random-nurse-practitioner-of-the-day walked in.

"So, I heard he has some reflux and it is under control. That's great! Oh, your bandaid matches your earplugs!"

And this, folks, is why we stay away from the pediatrician's office at nearly all costs.

After I corrected her, and went back over the same history I gave the nurse, she wrinkled her brow and said, "well, it sounds like the specialists are on top of everything."

Since we haven't really addressed the whole feet-turning-out thing (which might be perfectly benign), I mentioned it. She told me they don't worry as long as their feet are in alignment when they are walking and standing. She wanted to see him walk, then furrowed her brow some more.

Then she put him back on the table and checked out his hips, and told us that it is probably nothing, but we should keep a sharp eye on him. If his gait gets worse (or doesn't get any better) over the next year or so, we'll be referred to Shriner's Hospital to some orthopedic specialists. Since we're perfectly happy to ignore this issue for the moment, I'm happy to watch and wait. Unfortunately, since Nolan's issues have only gotten worse over time and not better, I have a feeling we'll be seeing an orthopedist sometime next year.

We left the pediatrician's office after the little guy got three shots (Prevnar 13, Hepatitis A, and the flu shot).

The great news from today: his iron levels are normal, his urine sample was fine, and his growth is slow-but-steady (with a small dip in height).



*Laryngopharyngeal Reflux: a whole 'nother blog post.

On the Bright Side

Unexpectedly canceled appointments always lead to a lot of stress: all of that angst in gearing up for a stressful procedure is heightened when the appointment is canceled and puts a whole chain of medical events in limbo. Then we have the sitters lined up (for Matt) that we have to contact, the day of school missed for both boys, and the hours of work missed by my husband.

On the other hand, talking to the ENT office personnel every 15 minutes this morning did give me access to Nolan's echocardiogram/EKG results: totally normal. While the ENT has not reviewed the results herself, the nurse practitioner looked at the report and gave me the information. His heart is fine, despite year(s) of severe apnea.

Nolan originally had a well-child appointment scheduled for this Friday, and I forgot to cancel it. Good thing, since the pH probe has been delayed until next Tuesday. We will go to the pediatrician tomorrow and do the routine height/weight/how-is-he-doing checkup. They also do a quick blood count at the pediatrician visits, which is important because Nolan is at risk for anemia (and calcium deficiency and B12 deficiency) from prolonged use of high-dose proton pump inhibitors.

Since we have no school or doctor's appointments today, we are going to play in the snow and finish decorating for Christmas. If nothing else, living in Western New York with a medically complex kiddo keeps us flexible!

A Week Off

We have no scheduled doctor appointments this week. Actually, Nolan's well-child appointment was scheduled for Tuesday, but I moved the appointment because I don't want him to miss out on his preschool's big Thanksgiving feast. Unfortunately, I moved it to December 3, so I have to call and reschedule that appointment due to the repeated pH probe.

Anyhow, I am extremely grateful for a doctor-free week. Not having to make the 70-mile-each-way trips to Buffalo is a wonderful thing. This week, we are tearing up bread for stuffing, thawing a turkey, and making Pilgrim hats in preparation for Thanksgiving.

Nolan is taking to the Zantac, though the Zantac liquid tastes rather bitter. When I approach him with the Nexium syringe, he takes the medication gladly. The Zantac, however, causes him to wrinkle his nose and make a run for it. Hopefully the new medication will keep his stomach pH up- I have no idea what will happen if he fails the next pH probe.

Here's to a week filled with crafts, feasts, and general gratitude!

A Medical Home?

Way back in August, I was looking at our calendar and noticed an appointment missing. Nolan's two year old well-child visit had never been set up by our pediatrician's office, and I didn't realize this until I flipped the calendar over and realized there was no appointment scheduled for the little guy's two-year old well child visit.

I called the pediatrician's office, and they told me that if I wanted to see our regular pediatrician, we would have to wait until November for an appointment. Because Nolan has so many issues, I really wanted to see our regular pediatrician- it was worth the wait. We last saw the pediatrician for a well-child in March, which means that Nolan's posterior urethral valves, gastric motility issues, and severe gastro-esophageal reflux disease (GERD) were all additions to his medical file since that visit.

I walked into the pediatrician's office today, and in walks... a random nurse practitioner. Not our regular pediatrician, as I had requested. This meant I had to go through Nolan's general history with her, including his hearing loss, urology work-ups, failure-to-thrive, and GERD. She didn't have a "feel" for his history, so she spent a lot of time worrying about his language development (this isn't our primary concern at the moment, which our regular pediatrician would have known).

All of this underscores the importance of a child's "medical home." For children who have multiple medical specialists, the medical home is a central location for all of the various medical records, and a physician who is aware of the entire scope of medical and developmental issues at play. In our case, we have an audiologist, an ENT, a GI specialist, and a urologist who all submit records to our medical home (the pediatrician's office).

When you don't have the same physician on a routine basis, however, the medical home becomes useless. Perhaps for children who have no underlying issues, a random "doctor of the day" is fine. For us, it is a rather big waste of time, since all of the appointment time is spent doing "catch up" work rather than discussing current concerns and growth. Frankly, I feel like we are medically homeless.

At any rate, the nurse practitioner listened to Nolan's heart, weighed him, measured him, and ordered a Hepatitis A shot and a flu shot. The H1N1 vaccination is still not available in our area, so we were out of luck in that department.

The current stats are (at almost 27 months of age):

Weight: 23 pounds, 12 ounces. A slight decrease from his weight at the GI doctor's office in August (he was 24 pounds then). This is right at the 3rd%.

Height: 34 1/2 inches. This is just above the 25th%. His growth rate in height has actually decreased (he used to be in the 50th%), but he's on the charts in a healthy region, so there is no real concern. We'll keep an eye on it, but it shouldn't become a problem.

Head Circumference: 50cm. This is in the 75th%. No matter what, the boy has a lot of brains!

The nurse practitioner wanted to see him in six months, because they typically do a check-up at 2 1/2 years. I collected my howling children (Nolan, indignant because of the shots, and Matthew, indignant that he didn't get his choice of sticker) and headed for the front office.

There, I was informed that our insurance wouldn't cover a check-up in six months. So we'll see them again in a year. I wanted an August appointment, so that we'd be closer to Nolan's actual birthday. I was then informed that insurance mandates that the well-child visits be one year and one day apart. So even though we were almost three months late in getting to see the pediatrician, we can't set the appointment closer to his actual birthday. This is going to cause a problem for school immunization requirements when the time rolls around- he won't be allowed to have his immunizations until after school starts, all because of insurance company bureaucracy.

I'm not too worried, because we'll just use his specialists as his "medical home" if need be. Because in some strange philosophy of being "penny wise and pound foolish," the insurance company allows us to see the specialists whenever we want. Go figure.

15 Month Well Baby Visit

We took a little trip to the pediatrician for Nolan's 15 month well-baby visit today. I went in with a few concerns, including his persistent head lag, anemia, and low weight. The visit was a good one, and I walked out with one less worry!

Nolan's anemia is NOT iron deficient anemia. When they ran his CBC during the last bout of illness, the blood count showed a normal MCV (mean corpuscular volume) and a low hemoglobin count. This means there was anemia, but not due to iron deficiency. The pediatrician re-checked his blood counts today and everything was normal. The running theory is that the virus he had caused some acute anemia, which has since resolved. This is great, because we can stop the iron supplementation. No more rusty-nail flavored vitamins!

He still has the head lag, but the pediatrician isn't worried since he is walking, running, and doing everything else a 15 month old boy should be doing. I'll mention it to the ENT when we see her on the 14th, just to see what she thinks. It still bothers me a little, because it is something that shouldn't be there. It's probably just a quirk of Nolan's, but I want to make sure.

He's 31 inches long, which is great! He's growing well (in height) and his head circumference is fine. He is still below the 3rd percentile for weight, at 19 pounds, 5 ounces. He's almost sixteen months old, so he's a little guy! The lack of catch-up growth is also attributed to the recent virus.

As Nolan doesn't tolerate illnesses well (Matthew's cold was severe bronchitis to Nolan), we opted for the flu shot. If we can head off any more infections, I'm all for it. He also got his scheduled chicken pox injection and MMR. Our little guy has two sore arms and one sore leg today!

We don't see the pediatrician again until March, so pending illness our doctor visits should decrease over the winter. That makes me one happy mama!

1 Year Checkup and Mommy Worries

Nolan had his one year checkup, and our poor little pincushion is now blissfully asleep after having his iron count/lead test, Prevnar, and Hib shots. The vital stats are:

Height: 29 1/2 inches. That's about the 25th percentile and not too far off from his growth curve.

Weight: 17 pounds, 12 ounces. Uh-oh. That's below the 3rd percentile and he's not even on the charts. Plus, he's fallen off of his own growth curve here.

And so begins the "mommy-worry." This is exacerbated by the fact that we don't have a cause for his hearing loss, so my mind goes in all sorts of directions. I doubt the following are related to the hearing loss, but I'm a mother so I worry anyway:

• Weight: The pediatrician thinks he's losing weight because we give him too many snacks. And he's walking and was recently weaned. I'm sure that's most of it, but we have structured snacks and good meals. Nolan doesn't eat a lot. In fact, he eats hardly anything at all. He drank a grand total of 3 ounces of milk yesterday. And nothing I can do convinces him to eat more! Anyway, we're under orders to decrease snacking and increase amounts given at meals. No juice is to be given whatsoever, under the theory that he won't starve himself and will increase consumption of high calorie milk. He doesn't get much diluted juice anyway (maybe 4 ounces a day), so this won't be hard to cut out. We'll see how it goes.
• Head lag. Nolan's head flops back when you lean him backward. This means that when he falls backward, his head hits first because he can't tuck it in. The rest of his gross motor skills seem age appropriate, so we're not too worried. But a part of me wonders why he doesn't have better control over his neck at the age of one.
• We've lost our only two words. For the past two weeks, there has been nary a "da" (ball) or "uh." Not sure if this is hearing related or if Nolan is going to follow his older brother's speech development pattern. On the other hand, we seem to have gotten our "B" sound back. You win some, you lose some!

The pediatrician also asked me if I had the MRI report. Darn it! I was hoping SHE did! With the additional drop in hearing, all of us want to see the report. The unofficial lowdown from the office staff was "normal," but I do want to see the report for myself. We have an ENT appointment next Wednesday, so I'll bring up my concerns there and see what that doctor thinks.

Other than a mildly weak neck and being very light weight, Nolan is doing great. His fine motor, cognitive, and most of his gross motor are at or above age level. So I guess I shouldn't worry too much!

Pediatrician's Visit

I had Nolan's 4 month well-baby visit today. I was extemely anxious for this visit because of my concerns for the shape of his forehead. She took a look at his head and felt for the soft spots, and said that craniosynostosis is unlikely because his soft spot is still open. The "front bossing" of his forehead is more likely his natural head shape. In other words, he probably just has a funny lookin' noggin.

"If it would make you feel better," she said, "I will write an order for some films to make sure his head is OK."

Long ago I learned to trust mommy-instinct over anything (or anyone) else, and so I requested an order for head X-rays. An hour and a half later (she forgot about the order the second she left the examining room), I left the pediatrician's office with the order for X-rays.

In other news, he is 13 pounds, 10 ounces (a lightweight) and 26 inches long at four months old. Looks like he's going to be a long and lean little man!

This week is absolutely BOOKED with appointments. Hubby left for Sweden two days after we got back from California, and the car decided to break shortly after his departure. After the pediatrician's appointment, the boys and I spent several fun hours waiting in the mechanic's waiting room. Turns out the bolt holding on the right rear shock has been severed. They ordered the replacement part and it should be in by noon tomorrow. I'm taking the car back tomorrow at 1:00 to get it fixed before we go to Buffalo on Wednesday. That car better run smoothly, because I have some hearing aids to pick up!

I'll probably do the head X-rays on Thursday and then we have our first day of "school" on Friday with the speech-language pathologist. I'm looking forward to Saturday- we might have a day free of appointments by then!!!