Post-Op Appointment

Nolan is absolutely fabulous. He has no signs of reflux, and other than that one awful retching event, he's been great over the past week. He had a post-operative appointment today, and other than having lost a small amount of weight, he looks perfect. The tiny incisions have mostly healed, his g-tube site looks beautiful, and he  is otherwise glowing.

Literally, he is glowing. His face has gained a color that we haven't seen in a long, long time. His cheeks are quite rosy.

And yes, his glasses are missing in these pictures. In one picture it was raining (hence the lack of hearing aids and glasses) and in the other, his ears were a little sore so we forewent the glasses for a day.

His current stats (with accurate, shoes-off measuring) are:

Weight: 33 pounds
Height: 40.5" tall

We are having to vent him more frequently than in the beginning. This is actually a good sign, though, as it means the wrap is firmly in place. I usually have to vent him once each evening, though today I had to vent him three times! He was full of hot air today (both literally and figuratively)!

We will return to the surgeon in 4 months for another check-up and tube change (the balloons on the mic-key buttons tend to wear out with time, so we'll be given a new button at the next appointment).

I'd really like to start weaning him from the anti-reflux medications, but that process will have to be taken carefully. Even with a fundoplication, some kids still require medication (though in lower doses). These medications have to be weaned because the stomach goes on a crazy acid-producing stint if they are pulled suddenly. I'll discuss the medication wean with his ENT at his next appointment, which will be in the summertime.

We have NO doctor appointments in April. None.

Please excuse me while I go and do the happy dance!

More Nexium Battles

Our insurance policy changed at the beginning of the year - not a big deal in the scheme of things, but we knew there would be a few snafus, particularly with so many providers and a medication that requires pre-authorization.

To head off problems with the little guy's medications, I called in his Nexium prescription early. Unfortunately, it was too early, so I had to wait to call it in. I tried again a week later, and it was still "too early." At this point, we only had 6 packets of Nexium left (3 days' worth), so I became a little concerned.

I called the next day and Rite Aid miraculously had Nolan's prescription in-house. I figured it was the result of some system error on their end, but at least his medication was available for pick-up. The pharmacy technician rang up the medication packets, and the total came to $900.

I looked at her and said, "Um. No."

She looked at the documentation stapled to the medication and it said, "individual not covered on plan."

I handed her our insurance card and said, "He's covered. We've used this card several times over the past few weeks and he is listed as a dependent."

Rite Aid had me wait for about 40 minutes as they called the insurance company. Our insurance company told Rite Aid they were too busy to take the call. Rite Aid gave up.

Which meant, of course, that my child didn't have the medication he needed.

I called Dennis at work and he looked at our insurance information online - Nolan was most certainly listed. Of course, our insurance company is having a huge battle with something known as competence: the "start date" listed on our cards was in error (the cards stated 02/01/12 as the effective date, when the real effective date was 01/01/12). The insurance company also had Matthew's name written down as "Motther." I suspect they have outsourced some of their labor. Still, the problem wasn't on the insurance company's end - it was on Rite Aid's.

In any case, I finally managed to get 3 packets of medication from Rite Aid, enough to cover Nolan for one more day.

I called this morning to see if they had sorted everything out, and the pharmacy tech said,

"We don't handle insurance issues. You have to call your insurance company."

I took a deep breath. It was a good thing I was at home and on the phone, or I would have started screaming. Mentally, I thought: "You imbecile! It is your problem, not the insurance company's! I can't fix your system, which is obviously malfunctioning!" Since this wasn't very nice, I didn't say it out loud.

I managed to say, "Talk to the pharmacist. See where the medication is. Then we might not have a problem, OK?"

She checked with the pharmacist and the medication is ready, all for the normal Co-Pay. They had obviously fixed their "system error" that was causing Nolan to appear as if he wasn't covered by insurance.

While we're stuck with our insurance companies and the battles that entails, we are certainly NOT stuck with a particular pharmacy. As soon as I feel the energy level, I'm switching to a different one. We certainly don't need added hassles to the regular difficulties in life!

At least Nolan will get his medication tonight. Sheesh.

Approved

Growing: Nolan is now 38" tall!

After our insurance sent the denial letter for Nolan's Nexium, our ENT's office sent another request to have the medication approved. While there is a possibility that the Prilosec will work adequately to control the reflux, the effects of it not working would be disastrous.

We received the approval letter in the mail today.

If the Prilosec worked, life would have been OK. If it failed, we would have been faced with more airway surgery and more complications down the road. In addition, the Prilosec package insert says that the 20mg pills does not have the same bioavailability when emptied into applesauce (a requirement for children too young to swallow pills): "PRILOSEC Delayed-Release Capsule 20 mg was not bioequivalent when administered with and without applesauce. When administered with applesauce, a mean 25% reduction in Cmax was observed without a significant change in AUC for PRILOSEC Delayed-Release Capsule 20 mg."

The Nexium comes in a 20mg oral suspension, which does not affect the bioavailability of the drug at that strength.

I am greatly relieved that the insurance company approved the Nexium. Nolan's acid reflux affects his airway, which makes monkeying with the effectiveness of his medication quite scary.

We can take a deep sigh of relief and know that his medication approval is secure for the time being.

Stop-Gap Measures

Nolan has been off of his Nexium for about four or five days. After two days on the phone and an hour spent at Rite-Aid, I managed to get his former prescription restored. He was originally approved for 10mg, twice daily Nexium through the end of December, and the new prescription shouldn't have voided that approval.

He is still denied the dosage he needs (20mg, twice daily), but the 10mg dosage is better than nothing. I gave him a dose of medication this morning, so he'll be back on the Nexium for four full days prior to the sleep study.

I have heard some stridor at night, and he still wakes frequently (even prior to the insurance company denial of the Nexium), so I am anxious about this sleep study. If he fails it, then he'll be scoped to determine if the laryngomalacia has returned. If it has returned, the next step is a revision supraglottoplasty. Revision supraglottoplasties usually come with a fundoplication to curtail the reflux - obviously not a path we want to go down. I'd really rather the Nexium and Zantac do their job to control the crazy level of reflux than go through (more) major surgery.

Denied (Again)

Nolan's ENT increased his Nexium dosage a month ago, because his weight has been increasing and he requires a higher dose to maintain effective suppression of his severe GERD. Nolan was on 10mg (twice daily) Nexium, which was originally approved through December 2011. Of course, the increase in dosage gave the insurance company yet another opportunity to deny drug coverage - we got the letter in the mail today denying Nolan's medication.

This means, of course, that Nolan is currently not on ANY proton pump inhibitor (PPI) medication. For a child with reflux so severe that it causes failure to thrive and his airway to collapse, this is probably not a good idea. Of course, the insurance company must know more about Nolan's condition than his various specialists (that sentence needs a sarcasm font).

As a recap:

1. Nolan was diagnosed with off-the-chart severe acid reflux. He was failure to thrive, had dysphagia, and was prescribed Nexium at a 10mg, once per day dosage.
2. Some improvement was noted, but Nolan began having trouble eating again. Obstructive apnea and central apnea was noted during a sleep study. The Nexium was increased to 10mg, twice daily.
   
3. Nolan developed laryngomalacia and severe obstructive sleep apnea. A follow-up pharyngeal pH probe demonstrated his 10mg Nexium was insufficient to control the reflux. 30mg of Zantac (2x per day) was added to his medication regiment. A follow-up pH probe demonstrated that his reflux was barely controlled (he still had at least one break-through reflux episode on the Nexium and Zantac).
4. A supraglottoplasty was performed to correct the severe laryngomalacia (caused by GERD). At Nolan's follow-up appointment to the surgery, his ENT increased his Nexium dosage to 20mg (twice daily) to completely suppress the acid reflux.
   

Our insurance company denied the claim, and he is not on his Nexium at the present time. This means that his pharynx is currently being assaulted by acid reflux, greatly increasing the likelihood of a recurrence of his laryngomalacia and obstructive apnea.

The Zantac is not sufficient to control his reflux (it is an H2 blocker, a "lesser" drug than the PPI's). The insurance company states that we have not:

1. Tried an H2 blocker with his Nexium.
2. Tried Nexium once daily.
3. Tried Prilosec (omeprazole, 20mg) twice daily.

Numbers 1 and 2 are clearly wrong. Nolan cannot take Prilosec because it comes in a pill form. He is three years old. Also, Nexium is very slightly stronger than Prilosec, and even the Nexium can't control his reflux without an additional H2 blocker.

And so, my little boy will continue to suffer from severe reflux, and cannot get the medication prescribed to him by his physician, because an insurance company determined it is too expensive.

The odd thing is, the insurance company is going to end up paying more when Nolan ends up in the PICU again with a revision supraglottoplasty.

Nolan has a sleep study on May 3, and is not on his medication. I don't expect the results to be pretty.

Hanging in There

Nolan continues to recover and is doing amazingly well. He has played outside a couple of times for brief periods of time and is playing as if he didn't have major surgery this week! He is extremely cranky and can't swallow when the Tylenol with Codeine wears off, so we have maintained the pain medication. We have a post-op appointment with his ENT tomorrow afternoon, and will adjust his medication types/levels after that appointment, if she thinks he would do better on regular Tylenol.

Tonight is the last dose of his oral steroid (to prevent swelling in his airway), and he'll be finished with the antibiotic soon, too. We will be very happy to get back to his regular medications (Zantac and Nexium).

We are looking forward to Christmas and all of the festivities in this coming week, so updates might be a bit scarce as we get closer to the holidays!

Good Enough

After driving through lake effect snow, getting stuck in one parking lot, and making it up to Amherst with two cranky children, we have our answer:

"Good enough."

Even on the maximum dosage of Nexium (PPI drug) and Zantac (H2 blocker), Nolan still has some breakthrough acid reflux. The results, however, are "good enough" to proceed with the airway surgery (supraglottoplasty) on Tuesday.

It seems weird to say, "Yay, he gets to have surgery!" At least we get to take care of the breathing issue and we can slay the reflux dragon on another day. Hopefully the meds will keep him stable for a long, long time, because the alternative to medical therapy isn't very nice (an operation called a nissen fundoplication, that generally results in a G-tube). Unfortunately, with his level of GERD/LPR reflux, that surgery looms over our heads. We plan on doing everything we can to avoid it!

I've always been highly reluctant to give the kids medication. I never thought I'd say, "Drug him up!" to a doctor, but when the alternative is an irreversible surgery with some potentially nasty side effects, we'll take all the drugs he can handle.

Revising a Diagnosis: Acid Reflux

When Nolan had his first pH probe done, it was placed all the way down by his stomach- just above the lower esophageal sphincter (LES). The doctor had to verify its placement with an X-ray, since you can't visually detect if the probe is in the right location. The probe demonstrated that Nolan had severe gastro-esophageal reflux disease, or GERD. His LES was opening at inappropriate times, allowing stomach acid to reflux up into his esophagus. Symptoms typical of GERD are (Nolan's symptoms are in red):

Burning sensation in the throat
Vomiting
Difficulty Swallowing (Dysphagia)
Sensation of a lump in the throat
Reflux is worse when lying down
Esophagitis
Slow esophageal motility
Delayed Gastric Emptying
Difficulty gaining weight/failure to thrive

Since starting the Nexium, the dysphagia has disappeared and he has been gaining weight. We thought the GERD was resolved with the addition of proton-pump inhibiting medication: the Nexium has been a literal Godsend for his growth and weight gain.

I thought it was very strange, then, when the ENT placed a probe that was very short, and sat behind Nolan's uvula. It had a red LED light that blinked, and I could see it blinking when he opened his mouth. How could a probe placed that high detect reflux in the esophagus?

As it turns out, they weren't looking for typical GERD. Instead, the probe was a new type created by the Resmed corporation, to detect a type of reflux called laryngopharyngeal reflux disease (LPR). This is the same condition as extra-esophageal reflux disease (EEGD), but is not the same as isolated GERD.

LPR is a distinct diagnosis, because it involves the dysfunction of the upper esophageal sphincter (UES). Acid reflux is normally stopped by the UES, and does not enter the lungs or the pharynx space where the voice box is located. Unfortunately, in Nolan's case, the upper esophageal sphincter isn't functioning, so the reflux comes up and hits his larynx/pharynx. The diagnosis used to be based on clinical evidence (see symptoms below: Nolan's symptoms are in red).

Chronic cough
Hoarseness
Stridor
Croup
Reactive airway disease (asthma)
Sleep disordered breathing
Frank spit up
Feeding difficulty
Turning blue
Aspiration
Pauses in breathing (apnea)
Apparent life threatening event (ALTE)
Failure to thrive
Reflux is worse when upright, during the day
Sinusitis
Chronic otitis media
Laryngomalacia
Normal esophageal motility

Children with LPR often lack the esophagitis that occurs with GERD, because the acid shoots past the esophagus and pools in the pharynx.

The Resmed probe can be placed visually, because it is placed above the upper esophageal sphincter. The probe detects small droplets of reflux in the air, as opposed to liquid reflux in the lower esophagus.

While LPR is a distinct diagnosis from GERD, the treatment is the same. Proton pump inhibitors are always required for LPR (sometimes GERD can be handled with H2 blockers alone). LPR tends to be more difficult to control, as we have seen in Nolan's case. Children over the age of three do not generally outgrow LPR, since it is caused by a permanent neuromuscular or anatomical problem. If medication fails to control LPR, surgery is sometimes recommended.

It is highly likely that Nolan's LPR is the cause of his laryngomalacia, and we have to control the reflux before we try to do any sort of airway surgery. Since his pharynx is getting sprayed with acid droplets, the laryngomalacia will likely recur if we don't get the reflux under control.

This is why we have our fingers (and toes) crossed that the Zantac + Nexium combination will be sufficient to keep his pH levels in the right range (above 5.5 for daytime readings). Once we can get this reflux under control, we can fix his airway and hopefully many of his other symptoms will disappear!

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!

Dagnabbit!

pH probe, the evening before it fell out.

The good news:

The ENT's office gathered enough data from the pH probe, even though it fell out a bit early.

The bad news:

The Nexium isn't getting the reflux under complete control. Nolan was showing pH drops while eating (which we saw) and also while he was sleeping.

The revised plan:

Nolan is going to have Zantac added to his medication schedule. Our medication alarm clock is going to work overtime for the little guy. He'll take Nexium 30 minutes before eating breakfast in the morning and again 30 minutes before dinner. He'll take Zantac at 7:00pm and again at 7:00am.

Second verse, same as the first:

Before doing surgery, we need to do another pH probe, to verify the acid reflux is being controlled by the two medications. We will have the pH probe placed on December 2, and will return the box on December 3. They will try to read the information from the probe as quickly as possible.

In the meantime, I am going to think alkaline thoughts. I deeply hope the Zantac helps control all the acid with my little GERDling!

Have Your People Call My People

We had a great Halloween this year- perhaps a little too good. We have been so busy with trick-or-treating events that my kitchen floor has been a wee bit neglected. Still, October was a great month and we are looking forward to a more sedate November.

Spiderman had to go to the GI doctor yesterday, because his Nexium prescription is running out. Our visits to the GI doc generally involve brief discussions of Nolan's progress, weighing him on a scale, and a lollipop.

When the ENT did Nolan's bronchoscopy, we discussed his Nexium routine. Our morning routine was absolutely fine, but I found out that Nolan had been receiving his nighttime medication incorrectly. We were never really instructed on how to give the evening dose, so we were giving it to him just before bed. As it turns out, he should receive it 30 minutes prior to his evening meal.

I am WAY too scatterbrained to remember to give the child his medication at 4:30pm, so we set up a little alarm clock to go off at the appropriate time. It has been working like a charm, and we're readjusting to the new medication regime.


We know that the Nexium is doing a LOT of good for Nolan. He's a little older than 36 months, but I used the birth-36 month growth chart to show how much he's gained since starting the medication. It has literally been a Godsend for him.


His height is starting to drop a little (going from the 50th% to the 25th%), but this is likely due to the fact that he was a low weight for so long. His body has a lot of "catch up" growth to do.

The appointment was going swimmingly until I mentioned that our ENT wants to do a pH probe on Nolan to rule out active reflux before embarking on the supraglottoplasty for the laryngomalacia.

The GI doctor was a wee bit ruffled by this and didn't understand why the ENT would do the pH/impedance probe. Apparently, I entered a turf war I didn't know existed. The GI doc stated that if the ENT is going to handle the reflux, then she would discharge Nolan from her care and hand him over to the ENT for follow-up. She wouldn't write a prescription refill for the Nexium, because if the ENT is going to handle the reflux care, then the ENT should write the prescription for the medication refill.

The net result of the appointment is that I drove for two hours with two small boys, chatted about Nolan's wonderful progress on Nexium, then walked out of the appointment with a dozen phone calls to make. And without a Nexium prescription. Luckily I have enough to cover the rest of this month, and we see the ENT on November 15. To be honest, I would prefer for his ENT to handle his care entirely, because she is aware of how difficult Nolan is to diagnose and has been a champion for him from Day One.

The GI doctor is going to call the ENT doctor today, and then I am supposed to call the ENT and the GI docs on Wednesday to figure out the solution to the epic "GI vs. ENT Turf War." Hopefully we'll know who is taking charge of his reflux care by Wednesday.

Preparing for John Tracy: Medication

I ran down to Rite-Aid to pick up Nolan's Nexium prescription. This is slightly unfortunate timing, because it means that his prescription will run out during our trip to John Tracy. We have two options to obtain enough medication for the little guy:

1. Implore the insurance company to approve some extra medication prior to our trip, so that we will not run out during our three week stint in California.

2. Go to California, run out of medication, and get the prescription refilled from a distance.

We're attempting option 1 first, hoping that our insurance company will approve the extra medication. If that doesn't work, then we'll go pharmacy-hopping in California to find a place that stocks Nexium (the CA pharmacy will have to call our pharmacy to get the prescription).

In any case, we're getting some final ducks in a row before our trip out west.

Eleven days and counting!

Buffalo: Round 2 (GI)

Completely unrelated to the post- just a gratuitous Nolan-cat picture

We went to the GI doctor today and took their scale for a spin- Nolan weighs a little heavier on the GI doc's scale, placing him on the charts! A heavily full diaper and thick, heavy clothes definitely make those weight numbers increase. The DuoCal is obviously doing its job, even if Nolan is back to eating almost no solid food. The GI doc agrees with our ENT that the reflux symptoms are definitely making a comeback, so she increased his Nexium to twice per day (still at the 10mg dosage). We get to go through the insurance battle all over again to get the dosage increased, of course.

Otherwise, he's looking good from a GI point of view. She wants to see him in two months to make sure the increase in medication level is helping. She also thought that his tonsils might be inflamed from a viral illness rather than reflux (I tend to agree, since he had a cold a few weeks ago). I mentioned the sleep study and she thought that was a good idea. I told her I wanted to avoid a tonsillectomy, but she said that a tonsillectomy/adenoidectomy might really help with the fluid-in-the-ears problem that Nolan frequently has. I was a little disheartened by this- I was kind of hoping she would say, "Oh, he's gaining weight and just fine! Don't worry about the tonsillectomy."

We'll take it as it comes- the sleep study will help make the decision for us. If Nolan's tonsils shrink back down in two months, we can nix the idea altogether. If everyone could send "shrinking tonsil" thoughts this way, I'd be much obliged.

The best news was when she whispered "Hey, have they gotten the H1N1 vaccine yet?" I told her that no, there was no supply in Jamestown.

Assuming the voice of what I would guess a crack dealer might sound like, she said, "I've got some vaccine. Quick, into the back office."

There is NO vaccine in the entire Jamestown area, and it is highly rationed. Being an immunologist as well as a GI doc, she just received a supply of 600 vaccine vials. This means that not only did both of my boys get the vaccine, but they will manage to get TWO doses of the vaccine. For fully effective immunity to H1N1, you need both shots- most people are only getting one. We see her in two months for a weight check and a check-up on Nolan's reflux symptoms, so we'll receive the second dose at that appointment.

The best news is that there will be no further trips to Buffalo this week. The next trip will take place on the 15th, for Nolan's repeat hearing test. Considering the huge lake effect storm set to hit us tomorrow, I am rather glad to stay at home!

Random Update

We've had a good week with the grandparents visiting from California, our first snow of the year, and visits to the Strong Museum of Play and Brown's Berry Patch. We've noticed a change in Nolan's language, which is getting more complex by the minute. Recent sentences include:

• "I don't know where Matthew is!"
• "My not a baby. My a big boy. Matthew baby!"*
• "I got my Grandad!"
• "My a frog. RIBBIT RIBBIT!"

The first sentence blew me away. It was completely spontaneous, and included all the appropriate parts of speech. Also, it was six words long.

He's also been responding better to sound, which is a big relief. We had about a month of poor response, which occurred with a cold. We know that Nolan's hearing level drops to about 80dB in the presence of fluid, so it is a big relief to see his behavior returning to "normal." He's turning to his name again, and even seems to be doing well in the presence of background noise. He turned when his name was called at preschool (the voice was behind him), and responded to Daddy's voice at the very hectic "Zoo Boo" event we went to last night.



The Nexium seems to be working well, and Nolan has been eating a good amount this week. He still isn't sleeping through the night, but our recent discovery that apple juice is on the "no-no" list may help matters a little.

It is nice and uneventful around here- just the way I like it! The only upcoming appointment is for earmold impressions on the 30th and then a well-baby checkup (2 year) in November. I love it when everything goes along so smoothly!



*Matthew heartily disagrees with this statement, and has indicated on numerous occasions that he is a big boy. This is a common point of contention between the two boys!

Approved

The medical office for Dr. Wonderful called yesterday and delivered the great news that they had prevailed over the insurance company. I was surprised it had gone through so quickly and easily, and Dr. Wonderful's medical front office person chuckled and said she had found a lovely loophole. The medication was approved not because our doctor thought it was the best medication for Nolan, but because of some quick thinking on the part of our doctor's medical office personnel.

The story, as related to me, went something like this:

I dropped off the prescription, and our pharmacist called to get insurance approval. The insurance denied the claim, and forwarded the information to Dr. Wonderful's office. Dr. Wonderful's office then sent the information back that the medication was urgent and the child in question needed approval quickly due to the severity of the case. Again, a big red DENIAL. So Dr. Wonderful's office decided to save the big battle for Wednesday, when there would be no one around. Just in case things started to get a little "loud."

She called and restated the information, that this child needed this medication. And he needed it quickly. The insurance company's response?

"Absolutely not."

She lobbied again and again, to no avail. They insisted Nolan take the cheaper drug, even though it was not recommended by our doctor. They would not approve Nolan to take Nexium until he had tried Prilosec and it had failed to work.

Then Dr. Wonderful's office noticed something. The Prilosec the insurance was willing to pay for was not only less effective for our little guy, it was also a PILL. Giddy with her plan, the office called the insurance person back.

"The medication you will approve for this child is a pill. He can't take a pill."

"He can take a pill. We are approving the pill."

"He's two. He can't swallow a pill."

"Why can't he swallow a pill?"

"He's TWO. YEARS. OLD."

"And how does that make him unable to swallow a pill?"

"It's a choking hazard!"

Silence.

More silence.

"The Nexium is approved."

So, on the basis that Nolan might choke to death on the cheaper drug and therefore cost the insurance company even more money than the cost of the Nexium, we have approval.

The kicker is the phone call I received about 10 minutes after I hung up with Dr. Wonderful's office.

*ring*

"Hello?"

"This is XXX Insurance Company, and I'm happy to let you know your son's medication has been approved without delay!"

Yeah, right, buster! I know the whole story. And I also notice that you never call when you're denying things, only when you have finally succumbed to approving something after a fight.

At least we have Nolan's medication approved for the next year, no matter what hassles we have to go through to get it!

On Nexium and Symptoms of Silent Reflux

Nolan, tugging at his neck. Nexium: Day 2

We are in "round one" of our battle to get Nolan's insurance company to approve his Nexium medication. I dropped off the prescription yesterday, and the pharmacist does not have any in stock. He said he won't order it until he gets approval from the insurance company, which is likely to deny the medication.

Our GI doctor feels that due to the severity of Nolan's reflux, Nexium is the best medication for him. Our insurance company feels a cheaper drug is the best for Nolan. Because a stuffed shirt in an insurance building knows more about my son's health than his doctor. But I digress...

The Nexium is a powder, which is mixed into a tablespoon of water. Nolan can't eat before it is given, and can't eat or drink anything for 30 minutes after taking the medication. Oh, and it tastes TERRIBLE. Since I can't mix it into applesauce or give him a drink to wash the taste out of his mouth, giving him the medication is quite the experience. And by experience, I mean "sit on your child and force 20mL of nastiness into his sputtering self while he spits as much of it back onto your face as he can." I'm guessing he's only getting about half the required dose, since he blocks the medication with his tongue and spits much of it out again. Mommies who have to dose your kid with disgusting medication that can't be masked, what do you do? I know there has to be at least someone with good advice out there!

I also thought I'd post about the symptoms of silent reflux. Now that we know what Nolan has, a lot of the strange things he does make sense. So, a rundown of his symptoms:

• Occasional random coughing and watering eyes. This is due to acid coming all the way up and getting into his lungs.
• Tugging at his neck. He does this quite a lot. This is because it hurts.
• Refusing food. Again, because it hurts.
• Craving liquid. This is because his throat hurts AND he's hungry.
  
• Night waking. He refluxes, he wakes up. We thought it was just a random toddler thing.

Non-silent reflux (would that be LOUD reflux?) shows up by vomiting more than twice per week. Nolan, as a rule, hasn't been big on the vomiting. He did it every day for a week in April, and again a week ago. Other than that, no puke. He does spit up every once in a while (about 2x per month), but not enough to scream "reflux kid!"

I'm off to call the pharmacy to see what phone calls I need to make today. If I'm lucky, we'll get approval before my sample packets run out.