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A Toddler and a Sleep Specialist

melatonin, sleep specialist, sleep specialist and toddler, melatonin and toddler, double aortic arch, g-tubeYesterday I drove an hour and half to Everett, WA to see the sleep specialist. Having a child with chronic illness often seems like one long ย rabbit trail. This spring Apollo was tired. His doctor thought he might need more calories so we upped his feedings. We checked his blood. We checked his iron. Twice. We discovered two heart murmurs which proved to be harmless after an ECHO. He saw his pulmonologist who sent him to his ENT. Six months later he is still tired. Now the doctors think (brace yourself) he’s so tired because he doesn’t get enough sleep.

*sigh*

So then we go see a sleep specialist.

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One the bright side, yesterday’s visit was so much less stressful than last time. You know that time when I had a Great Idea???ย No great ideas yesterday. I took the bare minimum of children I could (four boys) and had only one appointment for one child.

Essentially, it was decided that Apollo needs a sleep study (I had to drive an hour and half for that?) The nurse practitioner I saw said the sleep studies are scheduling into March…yes, four months from now. Keep in mind, Apollo’s ENT wants the sleep study done before he does a bronchoscopy and (possibly) takes out his tonsils. All this in an effort to improve his sleep. And we’ve already been searching for the root of his fatigue since May 2013.

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See how we ย go around an around until I feel like my head is going to explode? The nurse assured me that Apollo would have his study sooner than that. She told me to call and schedule an appointment for March, but they would put him on the urgent list since he had more than one doctor requesting the study.

She also brought up the topic of his latest iron check. She said that while his level is in the normal range at 17 (normal is from 10-300) it is not normal in the “sleep world”. She said for sleep issues they like to see at least a 50.

This is what happens when a child has multiple doctors and they rarely talk to each other. His pulmonologist ordered a ferratin check for his fatigue…and wants Apollo to have a sleep study. He tells me I can follow-up about he ferratin with his ENT who I was seeing the next week. Meanwhile, I get a letter in the mail saying his ferratin levels are “within the normal range” so when I do discuss it with the ENT, we simply verify that it is “normal” and he doesn’t need extra iron. The piece left out of all of this is that the pulmonologist was checking specifically to see if it could be causing sleep issues. Meanwhile, the ENT is thinking, “I need to see what happens to this kid’s airway when he sleeps” not aware of the pulmonologists concern about the connection between low ferratin levels and poor sleep. I am the only connecting piece between all of the doctors and Apollo, and since I am not trained a doctor or sleep specialist, I take the test results at face value.

*sigh*

In the end, I was only home about half an hour when I got a call from the sleep study scheduler. They had a cancellation and his sleep study is going to be done this Sunday! Apollo’s last sleep study was something of a joke (since he barely slept and never got into a deep sleep…therefore was rated with mild apnea) but the visit to sleep specialist was useful.

So, that’s where we are friends. Once again, hope is on the horizon…

 

24 Comments

  1. Robyn

    Sometimes we play a storytelling game with our kids called “Fortunately/Unfortunately”. You take turns adding a sentence to the story, alternating with the sentence beginning “Fortunately…” or “Unfortunately…” Seems like a good map for your Apollo posts. Fortunately, his ferritin is in normal range. Unfortunately, it still might be low enough to contribute to sleep problems. (Aside: I didn’t know that!) Fortunately, he can get a sleep study. Unfortunately, not till March. Fortunately, there’s an opening this weekend. Unfortunately… Whew! (It’s a much more fun game when it’s about traveling in a submarine or a trip to the moon. Promise.)

    It’s frustrating that you don’t have one trusted doctor who can herd all the cats (specialist doctors) for you and help them communicate with each other. Can his pediatrician/family medicine doc/primary care doc keep them all in the loop? That’s who is supposed to be in charge of organizing the specialists, in an ideal world.

    Do you have a plan for making the sleep study go more smoothly this time?

    The pictures on the tractor tires always totally crack me up. What a great playground you and Chuck have made!

    • bakersdozenandapolloxiv

      Exactly, Robyn. Similar to my Best/Worst Wednesdays post.
      Glad you learned something new from Apollo ๐Ÿ™‚
      Robyn- that is one reason we switched to a pediatrician this summer- to have one person oversee all of this. But then we are just adding one more person in. All of these reports with go to his pedi, but once again, she is just reading reports, not talking to all of his doctors. She ordered just a standard iron test, while his pulmonologist went a step further by adding the ferrin check.

  2. Elizabeth

    Wow, I feel the YOUR fatigue in all of this as well. I hope your team of specialists are able to actually function as a team and help Apollo.

  3. GroveCanada

    Wild Indigo Root is an herb…You can get a bag of it at a herb store…A teaspoon steeped in some hot water…Makes a tea the whole family can drink…What it does is it increases the quality of sleep, it makes you sleep deeper…It is non-addictive & doesn’t have the weird dreaming effect melatonin has…Or the memory loss regular sleeping pills cause…The actual action is it lowers fluorine levels which are often the cause of sleep troubles…I’m married to an insomniac…It’s an affordable solution too…

  4. Cecelia

    Hi…my husband and I both work in sleep and have several spec need kids with sleep issues…believe it or not they are on to something with the iron. Mine was low last year and I felt terrible. It being above 50 makes for way better sleep and less jerking and twisting. I will pray for Apollo as you iron out (hey I made a pun) all these issues. You are on a good track and I hope its not all just miserable for all of you! God Bless!

  5. Jessica

    Renee, I had sent you a message not to long ago with my experiences with the sleep study. Here’s what I dont understand… If people arent getting enough sleep during a study, how can you make any determination? I was labeled as having severe apnea yet I barely slept while I was there. My body still hasnt recovered. One positive is my doctors do communicate well.

    • bakersdozenandapolloxiv

      Yes, I believe I responded on Facebook. Yup, I agree, if he doesn’t get “real” sleep how can they tell? I am actually very hopeful that with being able to talk to him, and read about it and look at pics it will go much better. Last time he was in hospital and he was already scared.

  6. An idea??

    Don’t know if this will be helpful at all but can’t hurt to pass it on.

    My best friends son had a sleep study at the age that apollo is.

    The first time was a disaster-just like apollo. The wires, the headwrap the stress.

    So for the second test, my best friend had ‘pretend’ sleep studies at home. She bought soft, flexible wires at a hardware store. She also bought those tiny round bandaids, a bunch of gauze and tape.

    She explained what she could about the test and I think even made up a story. Then she attached the “wires” with the bandaids and then wrapped it all up.

    The first time she did it during the day and told him how what he was wearing would be put on at night and he’d have to sleep with it on.

    They Kept it on for only about 30 min while they read/watched tv did something non active. Then she took it off.

    Next day, same thing…except she put it on when she hoped he’d nap. He did. He hated it.
    He wore it during the day until he no longer pulled at it, even at one point ran about and used the toilet.

    Then, nighttime. She explained everything and even found an online recording of a heart-monitor(not the beep but the machine noise) and oxygen machine. He hated it. Slept worse.

    But she attached the fake stuff every night. The machine noise, a light on, everything she remebered (I think she eve took his blood pressure and temp)

    It was exhausting for her and her husband and her eldest kids help (had eight kids at that point).

    But the pretening helped. He was used to the feeling of the stuff on his head and the fake noises. It obviously wasn’t the same but it was close enough that the test itself was far FAR more successful.

    • bakersdozenandapolloxiv

      The sleep specialist did say they will send me a “desensitization kit” so we can “practice” with stickers and wires. Since we are going in so soon though, I’m not sure it will get here in time. They also gave us a booklet with lots of pictures of kids hooked up. Great idea and thanks for sharing!

  7. nicole

    We’re still praying for strength and answers!!!! How blessed Apollo is to have a Mommy that will be his advocate and put pieces together that even the doctors miss.

  8. Michele P

    Praying that this one goes much better than last time and that you are able t o find some answers! I do believe that lack of sleep affects our bodies so much more than we know! We will be praying for you all!

  9. Tank The Monster Dog

    My OB Would LOVE to see my iron levels at a 10… Heh. My ferritin (iron) levels are 5. Yes. One digit. Five. Cinco. Funf. Five. Crazy. Maybe I need to ask for a sleep study ๐Ÿ™‚ A night away from the kids… Hmmmmm…. (we’re adopting two… one is 3 years old, and one is five months old… and yes… I am eight months pregnant).

  10. Melpub

    My daughter woke up all the time when she was three and four–adenoids. They were removed. They grew back. Removed again. Grew back. The doc wanted to remove them again–at this point I’d heard of TCM (Traditional Chinese Medicine) and decided to try it. They did acupuncture and gave her a medicine–liquid–whose base was Chrysanthemum. It worked.
    If you find a TCM practitioner who is Chinese, or trained in China, they are usually the best.

  11. Ignore the terrifying and ignorant advice!!!!!!

    Please never, when facing such serious issues as apollo does go to “traditional” methods. The reason children live longer and don’t die from issues such as apollos, the reason people live longer is because of modern medicine.

    “Traditonal” medicinehas it’s place. But middle age is no longer 20 and marrige and families aren’t common practice because we are living far heathier and longer by the grace of modern medicine.

    Flower extract may make you feel etter but apollo would be dead if that’s the advice you had taken.

    Astounding….

    • bakersdozenandapolloxiv

      Well, obviously I’m all for whatever kind of medicine works. Apollo wouldn’t be alive without modern medicine. The other posters were simply suggesting some methods to help with his sleep, not suggesting I forgo medical care for him. He was prescribed anti-anxiety medicine by a doctor which literally decreased his ability to breathe. It made his already floppy airway much, much worse. Then he had to be slowly weaned off of it because the side effects of stopping cold turkey are so dangerous. Our doctor (yes, an MD) actually recommended that we try valerian (didn’t work) and a sleep specialist doctor is the one who suggested melatonin (which does work). So, sometimes the “natural” methods are condoned by MD’s.

      On a different note, I wish you felt comfortable enough to post under the same name each time.

  12. Laurie

    Hi
    I’m a friend of your mother-in-law. I recently purchased a “braintraining” program from http://www.advancedbrain.com to re-train our daughter’s brain to sleep for a full 8 hours. It is supposed to be very effective at training the brain to enter into and out of the various brain wave patterns that constitute a good night’s sleep. Our daughter is older than Apollo and there was something on the website about using it , but it is totally non-pharmaceutical, non-addictive, and the user’s brain catches on to the sleeping brainwave patterns in a matter of weeks or a few months, so it is not something that would need to be used again until the next time Apollo is not sleeping.
    The company has a toll free number that you could use to find out about using it for Apollo considering his age.
    Bless you for the path of mothering your children has taken you on.

  13. jessilee82

    What a mess. ๐Ÿ™ You almost need your own assistant just to talk to everyone and, as someone said above, herd the cats.
    Barring lottery winnings, I don’t see that happening. I wish you luck and wisdom. For both you and Apollo and the doctors.
    I’m glad so many people are rooting for you guys and praying for you. Hopefully he’ll be able to show a closer-to-real nights sleep this weekend.
    Herbal remedies do have a place, just like modern medicine has a place. I think when we use them combined is when we get the best results. I’m glad you’ve got doctors that are on board with that.
    I’ll be thinking of you all this weekend.

  14. Amanda

    I hope you have a notebook. If a doctor orders something ask why and who needs the results. Unfortunately you end up being the go between.

    • bakersdozenandapolloxiv

      I do, and I certainly thought I asked the right questions…but I was told the normal range is 10-300 and his was 17 which was perfectly acceptable ๐Ÿ™ Which apparently it is…unless you’re a sleep doctor.

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