Since Morgan was 2, Brad and I have commented to each other how she snores SO loud. We would be in bed in the evenings listening to her through the monitor surprised that such a big sound could come from a little girl.
Morgan’s 1st Dentist Appointment
Because of COVID, Morgan’s first dentist appointment was slightly delayed. But I’ll never forget watching her go through her teeth cleaning like a rockstar with the hygienist and then having the doctor come over to take a look at everything. His first words as soon as she opened her mouth were, “Does she snore? Her tonsils are huge!” It was like a lightbulb went off after this, I mentioned it to my husband that evening and decided to discuss it with our pediatrician.
Morgan already had an upcoming appointment with our pediatrician, so it would present the opportunity to talk to their doctor. He too agreed that her tonsils were larger than normal and supported us in our wanting to go see an ENT. He prescribed her a nasal spray as well as Zyrtec to take daily and said to let him know if we needed any referrals along the way so he could send them over.
In the meantime, Morgan had an appointment with her allergist. We also wanted to have her tested for a new panel of allergens in case this was the root cause of what we were dealing with or somehow contributing to the overall problem. [As a baby, Morgan dealt with eczema and food allergies that she later grew out of so we already have an established relationship with our allergist] The doctor gave a thumbs up to what she was taking per our pediatrician and upped the dose of Zyrtec. We then scheduled the allergy testing, for which we would have to wait 2 months.
We had already gotten the recommendation from others for the best ENT on the east coast, Dr. David White located in Charleston, SC which is a 2 hour drive from Columbia. One day at work, my husband stumbled into a conversation with someone he knows through the construction world. He shared how their son was dealing with awful snoring, terrible sleep patterns and fatigue which resulted in behavioral issues like temper tantrums. Brad told me about this conversation that night and it was crazy how Morgan checked every box for this same list of symptoms. This family’s was seeing Dr. White, were sent for a sleep study and later into surgery to remove tonsils and adenoids. Their youngest son was also started to show the same pattern of symptoms and was beginning his journey with Dr. White as well.
At the beginning of February, we had Morgan’s allergy testing done. She had all the little pokes put on her back and then I got her comfortable on her stomach while she watched Peppa Pig on her iPad. Poor thing was so itchy, as expected. I noticed a few spots beginning to look more irritated than others, with one area getting especially large. Once the test was over, they gave her some allergy medicine (which she had been off of for 2 weeks) and some cream for me to rub on her back. We then unfortunately had to wait a long time to see the doctor because there was an emergency appointment that came in. (We cold hear the poor women hacking up a lung from a nearby exam room.) Once our doctor was able to see us, we got Morgan’s results. She had reactions to typical seasonal allergies but was off the charts for dust mites. He was shocked at how high the number was for her age and size. Of course, I then started feeling bad that maybe I’m not as good at cleaning my house as I thought but he assured me that’s not the case and to not go into psycho cleaning bed. The focus was to be put on her bedroom, specifically our bed since that is where we all spend the majority of our time when we are at home. So I bought the hypoallergenic pillow covers, hypoallergenic mattress cover and a hypoallergenic comforter. I was also told to wash her sheets and lovey every week in hot water. Brad also then put an air purifier in her room as well as family room.
Columbia to Charleston: Morgan’s 1st ENT Appointment
Four days later, we went to see Dr. White. Morgan was nervous but he had a very calm demeanor. I went through all of Morgan’s symptoms — large tonsils, snoring (which had gotten much better since using the nose spray), interrupted sleep and tons of movement (every time I would look at the monitor, Morgan would be flipped or turned in her bed; she probably used every inch of her full-size bed by the morning), energy for about 2 hours after waking up and then I could tell she already seemed exhausted, irritability, temper tantrums, inability to stay awake in the car and refused naps but if she fell asleep during the day for even 5 minutes, her 8:00pm bedtime became 10:00pm or even later until she could fall asleep. Because of this, we got into a regular routine of having to give her a melatonin gummy on a nightly basis. I also shared that from talking to other parents dealing with similar symptoms, we wanted to look further into this and that’s how we came to be referred to him. Especially since it seemed to be affecting her sleep and we didn’t want it to also impact her growth so to be able to nip this in the bud at a young age now would be ideal. He agreed and confirmed that we were doing the right thing. Based on what I shared with him, he said she checks every box for pediatric sleep apnea and wanted to schedule a sleep study. After that, we would discuss the results and figure out how to move forward. Either he would recommend surgery to remove tonsils and adenoids or we would treat her symptoms with allergy symptoms similar to what we were already doing. The appointment took no more than 5 minutes and we were out the door with our sleep study paperwork with info on what to expect.
Maybe because all of this was on my radar and in the forefront of my mind, I started seeing other people through social media walking similar paths. I realized some of these issues with large tonsils, etc. really weren’t all that abnormal. Quite a few kids deal with this. And I also realized that just like every kid is different, every outcome and path for treatment can be different too. I was just very hopeful that the sleep study would give us the answers on how to move forward on how to help Morgan, which would indirectly help us too. If I’m being honest, the behavioral issues were becoming very hard to work through. The screaming, crying and frequent meltdowns were taking their toll on me too (I’ve definitely shed my share of tears too between maxed out patience and feeling like I hadn’t been able to figure this out at her mom) and I just wanted for all of us to be able to work through this and be on the other side of it.
I called as I had been directed, and we scheduled the sleep study for the end of April. Apparently this division of the hospital stays busy which is why we had an almost 3 month wait after our initial consultation appointment. I’m sure I also delayed things slightly by opting for a Friday night sleep study to help with Brad’s work schedule and the fact that my parents were out of town so this just made it easier so that Laney was taken care of and finished with there school week.
Back to Charleston: Morgan’s Sleep Study
The time came for us to travel to Charleston again for Morgan’s sleep study. It was recommended to try to keep the day as normal as possible and to not let her nap. Because we live 2 hours away, I planned for us to get there earlier in the day and enjoy some fun things together like the Children’s Museum of the Lowcountry, walking on King Street and playing at the Mt. Pleasant Bridge playground. We had so much fun!
We ate an early dinner at Chick-fil-A and I could tell Morgan was slowing down so I was successful at my job of wearing her out so she would be ready to go to bed once we checked into the hospital. I was also exhausted as I was newly pregnant.
Once again Morgan and I were both sharing some nerves; Morgan, the unexpected of the sleep study and me, worried about how I’d feel knowing I wasn’t going to sleep well and the fact that I was battling nausea on a daily basis.
When we got to the hospital to check in, we were taken to a room that we were told that would feel more like a hotel. It didn’t. The only thing different was the lamp on the bedside table. They let us get settled and ready for bed before our nurse, Mike, the sweetest old man, came back into get everything attached to Morgan and hooked up. It probably took a solid 45 minutes to get everything where it needed to be. It was quite the process. Morgan stayed partially distracted watching Disney+ on her iPad, but the more that went on the more upset she got. She also was getting very sleepy and started nodding off a few times in the seated position so I sat on the bed so she could lean into me. Once finished, there were so many wires! The one Morgan disliked the most was the nose microphone that was taped to her cheeks and went slightly up her nose to listen to her breathing and snoring.
After that, it was lights out and Morgan went right to sleep. I read for a couple of hours on my Kindle before I was able to get a little sleep but it was very broken sleep as Nurse Mike came in every few hours to check everything or if he had an alert that something wasn’t reading properly like her finger pulse reader of the nose microphone. There was one time that Morgan was rolling around a lot and got all tangled up in the wires and Nurse Mike had to come help me get her unraveled. It was definitely an experience. We were woken up the next morning at 6:00am. Everything was removed, we got dressed and were out of there by 6:45am. Morgan requested breakfast from Starbucks, so after a quick drive thru run, we made the drive back home … for naps!
Sleep Study Results
When I initially scheduled the sleep study, I was told to call the ENT office back to schedule the follow up for 2 weeks afterwards. I did just that and we went back in the middle of May to hear her results. Both Morgan and I were nervous for this appointment. She thought she was going back to have all of the sleep study monitors put back on her even though I kept assuring her that that wasn’t happening and I was nervous that we would get there and be told everything looked normal. I just so badly (selfishly) wanted an answer and a plan to move forward to hopefully put an end to the rollercoaster of emotions our home had turned into. If we didn’t get that from her doctor, I wasn’t sure what I would do or look into next. When Dr. White came into the office, he shared with us that he reviewed her sleep study and … everything came back within normal ranges. Her snoring was within “normal range” and from a structural standpoint, her tonsils were not affecting her breathing in a way that would need surgery. We could just keep doing what we were already doing. He then said we could just schedule a follow up for 6 months later. I didn’t feel satisfied with this but I was also so torn — happy that she was fine structurally from an ENT viewpoint, but sad for all of us that we hadn’t yet gotten to the bottom of whatever all of this was. I then asked him more about the sleep side — was Morgan reaching every phase of the sleep cycle? Was there are. gap somewhere to still cause the symptoms we were dealing with on a regular basis with her fatigue? He said that he could see sleep disruptions but would not be the best person to answer those questions. Enter a new referral: Pediatric Sleep Medicine. Dr. White sent a referral over to the sleep medicine office and said they would call me to schedule an appointment.
A Shocking Discovery about Allergy Medication
It took about a week for them to finally reach out and I made an appointment for the end of July. During this time, social media shed some new light on another aspect of our journey. I was watching some allergy related stories on Instagram from a credible source and learned that some kids experience negative side effects from Zyrtec: restlessness, irritability and mood swings just to name a few. I immediately took to google and found numerous studies and articles proving this information. I shared this with Brad that night when he got home from work and he went right to the cabinet, threw it in the trash and said we would see if we notice any changes. I’m not even kidding when I say that by a week later, Morgan’s moods had improved significantly. It was kind of mind-blowing.
Morgan’s Pediatric Sleep Medicine Appointment
July finally arrived and Morgan and I made another 2 hour drive to Charleston for the appointment with the pediatric sleep medicine office. Dr. Riva reviewed Morgan’s sleep study and listened to everything I had to say as I went back through the last year or our journey. I even told her about the Zyrtec thing, which she confirmed. She then asked Morgan some questions to rule out things like restless leg syndrome, etc. and shared that she could see that Morgan’s sleep cycle looked good. She was reaching each cycle for the amounts of time necessary though she could see there were numerous interruptions in sleep throughout the night. But she wasn’t too concerned since the interruptions were usually followed by her going right back to sleep and not being awake for a lengthy period of time because she could fall asleep again. Dr. Riva then said, with everything we discussed the only thing she could still think of to look into would be Morgan’s iron levels, specifically her ferritin. I had another lightbulb moment with this because I was already very familiar with his. I had a severe case of mono in high school which depleted the ferritin in my body and I was on iron therapy for years before my body could get back into a normal range. Essentially this is the way oxygen travels through our blood to reach out brain and other tissues. Without normal levels, you experience extreme fatigue. Morgan and I went down to the lab to have the bloodwork done and then we just had to wait. Again. But this time I was so hopeful that maybe, just maybe we were going to get an answer especially since the doctor so honestly said that if these levels weren’t low, there was nothing else she could do to help.
A Diagnosis is Finally Made
A couple days later, we left for our summer beach trip. It was there that we received Morgan’s results. Her levels were low and the doctor had already called in a prescription for liquid iron, which we picked up upon our return. She also sent over a ton. of helpful information on how to get more iron in Morgan’s diet. I learned that orange juice helps our bodies absorb iron when taken in supplement form or from a non-animal source (veggies, grains, etc.) and that dairy should be avoided for an hour when consuming iron because it actually hinders your body’s ability to absorb it. Here is also the chart she sent me:
This has made it so much easier for me when meal planning and grocery shopping. We also pay a lot closer attention to nutrition labels on foods to see the iron content. And it’s so crazy to me to see how some brands of the same kinds of foods can be so different. For example, Tyson chicken nuggets have 0 iron in them while another brand I had never bought before contained 10% which is great!
Our Happy Girl
We began iron therapy via the supplement as well as intentional diet changes once back home from the beach and we saw a difference by the 2 week mark. Morgan no longer hits a wall around 2 hours after waking up, she maintains energy throughout the day, doesn’t fall asleep in the car anymore, has less tantrums (just the normal ones that come with being 3), has a more joyful demeanor, goes down for bed easier and sleeps so much better actually staying on her pillow with normal movement. It’s truly night and day.
We will continue to monitor her iron levels through bloodwork with our pediatrician. Dr. Riva told us it may take 2 months to show a difference from a bloodwork panel so we will continue to do what we are doing and will have everything checked with Morgan goes in for her 4 year old well visit in a few months.
Do I think the iron was always the only issue? No. Even though this journey ended up spreading across 4 specialties and took over a year to figure out, each doctor played a part. It was like a puzzle that just took us awhile to piece together. We uncovered various health issues that needed attention that we can now treat and things we decided to change, like Zyrtec. Were they all related? Maybe. Maybe not. But I do think together, they were creating the perfect storm inside of Morgan’s little body and I’m so thankful for mom intuition and not backing down until we felt peace with the answers we were given.
I truly hope this helps someone else who may be walking a similar journey. All paths are different which I had to come to terms with after thinking I knew what came next based on what other people were sharing. I felt so defeated coming out of so many of these appointments with not many answers and still more questions. It may have taken us four different specialities and numerous appointments but now knowing what we know, it was all worth it to know that we have the tools needed to continue to help Morgan navigate her health and well-being.