The Toddler Who Won’t Sleep {the Sleep Specialists and Melatonin}

posted in: Apollo | 88

melatonin and toddlers, is melatonin safe for toddlers?, can I give my toddler melatonin? my toddler won't sleep

Monday was our big day at the sleep specialist. I was a bit worried…I wondered how exactly they separated sleep issues from a child who just doesn’t sleep….

Our appointment began with a long questionnaire about Apollo’s past and current sleep habits. They were very, very detailed. Before I was even finished we were called back. The nurse took Apollo’s vitals and asked more questions.

I was so very impressed with the Dr. M. He knew Apollo’s entire history. He had read the report from the bronchoscopy and double aortic arch division. This may seem minor, but believe me, I’ve run into plenty of doctors who barely knew if Apollo was a male or female…much less his history. I made a point to let him know I appreciated the fact that he had done his homework and knew all about Apollo. “No problem” he said. “I talked to Dr. R on the phone about Apollo several times“. Thank God for doctors who care and see Apollo as a real little person with valid emotions and fears. Not just a “toddler who won’t remember anyway”. As if his trauma doesn’t matter. He may be too young to remember, but he’s not too young to experience real terror.

Most of the appointment was spent talking about Apollo. How he slept before the surgery and how he sleeps now. Dr. R (the pulmonologist) wrote in Apollo’s records that he’s suffering from post-anasthesia stress disorder. This doctor agreed. Basically, it came down to giving Apollo drugs to help him sleep. Believe me, never in my life did I envision a time when I would give my child (a toddler no less) a drug to help him sleep. I’m pretty vigilant about healthy foods for my little ones and avoiding unnecessary medication, etc. But, we’ve given the naturopathic methods (valerian, essential oils) several weeks to work with no change.

The idea is this: Apollo has never developed a normal sleep pattern. As a tiny baby he would often only sleep 5-10 minutes out of 4 hours or more! He would go from sleeping, to just popping his eyes open and being wide awake. No in between. Every week or two, Apollo will wake up in the night and be wide awake for one, two or three hours…Initially, of course, he had undetected health reasons for not sleeping (reflux, heart defect which made it difficult to breathe). Now, those reasons have been removed and he’s still not sleeping. In part because we’ve now added trauma to the mix. The hope is to “help” him sleep with some medication as a short-term effort, hoping that his body will then take over and begin to regulate his sleep.

Step one: melatonin. You probably all know this is a hormone our body produces naturally…some people just need a little boost. The doctor only gave this a 5-10% chance in working with Apollo because he goes to sleep and wakes up in the same 2 hour window. But he felt like it was low-risk option to try. We will be giving 22 month old Apollo 1 mg of melatonin 30 minutes before bedtime.

Step two: a prescription for a medicine for anxiety which should help with sleep.

Step three: he suggested an anti-histamine which stimulates the appetite to help him know he’s hungry and hopefully eat more.

When the doctor examined Apollo he said (and this is almost a direct quote because I always take notes during and after his visits), “Funny…with as noticeable as the constriction [of breathing] is on my basic exam, I’m surprised that Dr. M missed the vascular ring  in the bronchoscopy”. There are no words…

Later that afternoon, after the appointment, Apollo began choking on a french fry. This was not the coughing, sputtering choking that you’d expect in a toddler, but he was sucking in air and breathing around the french fry. It was taking all of his effort to breathe both in and out with a loud, audible wheeze and hunching and heaving of his shoulders. The skin around his lips and mouth had turned white. Since he was moving some air (unlike the incident in December where we called 911) I decided to just try to help him relax. I picked him up, held him against me and talked to him. “I know you’re choking…you’ve got food stuck in your throat and you just need to relax…it’s okay…” and I prayed. After several minutes, the food passed and he began to breathe normally.

When I related this to our doctor, he pointed out that the food couldn’t have been caught in his airway, though that’s what it sounded and looked like, since it resolved by going down not coming up. The same with the incident in December…he said he doesn’t know what would cause choking like that, but he thinks perhaps it is a “communication” problem. Something is going funky between his brain and throat. He believes this is a different type of choking than his regular mealtime choking. I, of course, need to bring this all up at his feeding evaluation April 10.

{Updated June 2014: it is perfectly obvious now that the choking was caused by a diverticulum, or pouch of blood vessel, that was pushing on his airway. Less than two months after this post Apollo would have a g-tube placed and seven months later have his double aortic arch division redone.}

As far as sleep, Tuesday I gave Apollo one does of the antihistamine to increase appetite and then gave him melatonin about 30 minutes before bedtime. I put the other kids to bed and Apollo fell asleep after only five minutes of rocking! He was asleep by 9:00 and slept until past  4 AM! I awoke several times in the night and checked on him….I was so thrilled. Just using the melatonin would be the best case scenario.

Yesterday, I decided to skip the anti-histamine so I could be sure it was the melatonin that was making him sleep…so he just got the melatonin before bed. And he was up every two hours, tossing and turning, talking, crying…back to his normal sleep habits.

You can bet today I’m back to giving him both to see if that makes a difference.

{Please, please don’t leave a comment telling me how awful I am for considering drugs to help my son sleep…if you know anything of Apollo and his history, you know he is a very unique case. This is all done under the direction of numerous doctors. Thank you.}

 

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88 Responses

  1. Tara Bergeron

    Glad to hear of his long sleep. I hope it will keep happening. You are doing great with all the decisions to be made. You and chuck know best what Apollo needs. Love you all.

  2. Praying intently that this first choice will be the one that works. It makes so much sense that Apollo has never learned to sleep so his body just needs help figuring that out. I’m also very happy to hear this doctor took his time getting to know all he could about Apollo before making a plan. He’s a keeper πŸ˜‰

  3. Elisabeth

    I would never think you are a ‘bad mommy’ for giving him something to help him sleep. He needs sleep. He can’t heal as well without sleep and he can’t grow as well without good sleep. You’re doing the best thing for him by trying the medications since everything else hasn’t been working.

    I hope and pray this regimen will work and your baby will get some sleep! I also pray Kalina is feeling better- poor dear, she looked so miserable. <3

  4. I am all for doing whatever is needed to help a child sleep or be the best that they can. We just started giving our three oldest Melatonin a few weeks ago and it has been a godsend. They go to sleep at bedtime without playing or reading until very late and getting up at a more reasonable time as well. We had one who would stay up late and get up really early, now his sleep rhythm is much more “normal”. Hope both medications work a seond time for Apollo.

  5. Hi Renne,
    happy to read that Apollo gets better.
    There are some antihistamine drugs that cause sleepiness. Melatonine works more in the long term. Sleep issues are hard to resolve sometimes. Just hold on!

  6. You and your husband are making the choices that are best for little guy. He needs sleep to function, to be healthy, to grow, to be happy (when I am tired I am cranky!). I hope the meds continue to work for him and that he starts to feel better…and you all start to get more sleep.

  7. We started giving my 5 year old melatonin (a tiny dose! 125 mcg does it!) at bedtime in January. For us, it has been a miracle drug. He went from awake for an hour or more every night after lights out, to asleep within 5-10 min. Every night. Tried stopping it last night and he was wide awake again. Little 1/4 pill dose and he went right to sleep.

    We have gotten our quiet evenings back, and our boy gets 1-1.5 more hours of sleep every night than he used to. No objections to the wise use of sleep drugs from this corner!

  8. Tonymasons

    It’s possible is just doesn’t need much sleep. I rarely get more than 4 hours per night, and I’ve been like that since I was young. But…I eat a lot to compensate for the extra active hours. Is Apollo tired/cranky during the day?

    It’s also possible that he’s waking up because he is hungry, which is caused by his poor eating. I sleep much more soundly on a full stomach.

    • bakersdozenandapolloxiv

      Tony- Judah (14) has never needed much sleep. Apollo, on the other hand, is tired all the time. Apollo nurses at night and we try to feed him a snack around 7, but he often refuses to eat it.

  9. I think you’re absolutely doing the right thing! Doctors (and it sounds like especially this guy) know their stuff, and coupled with your judgement as his mother I’m sure you know the right thing to do. Anyway, 1) they’re short-term solutions to help him get into a healthier pattern, not a lifetime on something, and 2) melatonin and anti-histemine are hormones already present in the body, you’re just giving him a little boost of them. When you say it like that, it sounds positively naturopathic, right?

  10. You’re a good mom.

  11. I was wondering if you saw an increase in his food consumption with the anti-histamine? Perhaps it was a fuller tummy that helped him sleep longer. In the end, who knows. I’m glad everyone is getting more sleep and hopefully he’s eating more. I pray that he will be able to sleep and eat so he can grow and grow out of the more difficult parts of the narrowing. I hope his little body and brain are able to reset.
    About the choking.. I wonder if there is some kind of physical therapy to help his body learn to swallow again. It almost sounds like, because of the restriction, the smooth muscle of the esophagus isn’t working in the rhythmic contractions like it should to move food down. IDK, just my first thought when I read this.

    • bakersdozenandapolloxiv

      Jessica- he had only taken it once at the time I wrote that entry. As of now, he’s only had it for two days so its too soon to tell.

  12. I am so happy for Apollo…God gave us medicine, good doctors and I think you are doing the right thing. This child needs rest and food to grow. I would never think you would do anything to harm your son!
    I will keep praying for Apollo!

  13. No bad comments from me. Your baby has been through so much, and you are now trying to help him heal in every way.

    So glad the doctor was so thorough as well.

  14. Brenda Colvin MD

    I think that you are an awesome Mom in so many ways. Keep up the good work, and may Apollo start sleeping so that you can too!

  15. It could be he needs to learn how to swallow. Several years ago, my dad had a mild stroke after some surgery and he went to a hospital in Everett where they had to ‘re-teach’ him how to swallow. There were a lot of people there with the same problem, some had food that was only liquid and they are gradually given foods that are solid. Fortunately he was there less than a week and after that there was no problem.
    And Renee, no one is going to think you and Chuck are ‘bad’ parents for giving him a drug to help him sleep. As another poster has said, it’s only temporary not for the rest of his life.

    • bakersdozenandapolloxiv

      Peg- he goes for a feeding evaluation April 10, so hopefully they will be of some help.

  16. Like some of the other commenters, I was also wondering if he ate more than usual on the antihistamines. If he did, then maybe he is waking up because he’s hungry. If not, the antihistamines may just be putting him to sleep directly. (Those Benadryl-type antihistamines sure make me sleepy!)

    I’m also inclined to speculate with one of the commenters above that maybe his esophagus needs to build up the muscle which it was prevented from building up before. If this is the case, then his eating may continue to have issues for some while, but over time, as that muscle starts to develop, it will get better. (Like your arms slowly build up muscle when you start lifting weights, or whatever.)

    If anyone gives you a hard time for giving your kid medicine, you should quote the Bible on them. “God makes the earth yield healing herbs which the prudent should not neglect; … He endows people with knowledge, to glory in his mighty works, through which the doctor eases pain, and the druggist prepares his medicines.” That whole section from Sirach 38:1-15 is a great take on the God/doctors/medicine thing.

  17. I am so glad that Apollo (and YOU!) got to have a good night’s sleep. Decent sleep is necessary for growth, and if Apollo needs some thoughtful and considered chemical help to get into a natural sleep pattern that makes sense.

    Poor sleep is not just exhausting for parents, but can be a real problem when a child is essentially NEVER getting any good sleep (which sounds like Apollo’s history). That you have made it this far and sound sane is nothing short of miraculous.

    Keeping you all in our prayers.

    • bakersdozenandapolloxiv

      Samantha- yes, he’s NEVER had good, restful sleep. Poor kid.

  18. Hang in there Girl! Sounds like you are in the right track! Nothing like a good nights sleep to be able to cope with life!! God is always right beside us to carry us through!!

  19. Tryptophan is excellent for sleep and anxiety. It is an amino acid, so it needs to be given on an empty stomach, particularly free from other protiens. We prefer the capsule form. You also need to make sure he is getting a good multivitamin with a B complex (the Bs are important in converting the tryptophan). Melatonin did not work for my daughter, but tryptophan does.

    • Gosh, the part about an empty stomach sounds like it would be a poor fit for Apollo, because they are really working to get his food intake up right now!

  20. Oh for heaven’s sake for you to even have to put that note in the bottom is just sad. I would have caved and given him drugs long ago to get him to sleep…to go that long without sleep is just…unfathomable. I don’t know how you all have survived. So glad the medicine seems to be helping.

    • bakersdozenandapolloxiv

      Kristi- if you have a blog for any amount of time, you find there is no limit to what people will say online…

  21. They sell chewable melatonin at Fred Meyers. You can give 2 – 4 tablets at nap time and bed time. Also, 5htp (vitamin) will help him to make it past 4 am. it is not a sleep aid technically. He really needs it if he sweats bad at nite. That will stop the sweating.

  22. There’s nothing as healing as sleep, for a toddler or a parent. My oldest child was a bad sleeper, although nothing as severe as Apollo, and I still remember vividly the despair of having to face a long, active day yet again without enough sleep. Whatever you have to do so everyone can get enough sleep seems worth doing.

  23. They sell chewable melatonin at Fred Meyers. You can give 2 – 4 tablets at nap time and bed time. Also, 5htp (vitamin) will help him to make it past 4 am. it is not a sleep aid technically. He really needs it if he sweats bad at nite. That will stop the sweating.

    wow, I just tried to publosh this and it saod, “there was an error publishing your commeny. Perhaps it was to short?”

    Never have I been accused of being to short!! lol!

  24. I’m so glad to hear that the doctor was so wonderful and that you may have found a way to help him sleep. Sleep is so important for kids and adults. I tend to go for the most natural way of treating my children’s medical needs as well, but I’m so glad we live in a time and place where we do have access to doctors, hospitals and drugs when we do need them! I’ll be praying that this helps Apollo on his way to healing and a good nights sleep.

  25. I’m so glad doctors are on board, educated about Apollo, and offering options. I’m a generally healthy, anti-meds mom, but both my son and myself have ended up having to be on them. Sometimes that’s a needed bridge in the path to health. May more sleep and more food be on the horizon.

  26. I used to wake up every hour or so and they put me on a anxiety medication that has a huge side effect of drowsiness. It has changed my amount of times waking up from 8 to 1 or 2. It gives me a lot of dreams but they aren’t scary and I don’t remember them. I would hope for a full nights rest but I guess in my case it is progress.

    Some people need a little extra boost, and sometimes it is something they need their whole life. My mom has been on the same sleeping pills as me for 8 years and could never go off of them. I’m no doctor so I don’t know if your son will need it for a week or forever. But it isn’t some evil thing, especially if all you are using is Melatonin.

    Good Luck to all of you! Maybe I will give Melatonin a try!

    • bakersdozenandapolloxiv

      Maddi- thanks. We’ll be trying the anti-anxiety meds soon…

  27. I do hope you find a good mix of these medications to help him sleep – I just can’t imagine how wrung out you all must be. Fingers and toes crossed! πŸ™‚

    Cheers – Joolz

  28. cecily spencer

    using medication is not bad or evil. I’m all for trying homeopathic but we should never forget what a blessing modern medications are. You are using all the resources available to help your son!! Life with a child who is ill is a different path then most people experience and don’t always understand. You are doing great. keep it up.

  29. So, so glad you have a sleep solution for you and Apollo! Hoping the spring season brings good things for you and your family.

  30. I absolutely think you and Chuck are great parents who have tried just about everything under the sun to help Apollo get the sleep and nutrition he needs. I am a person who tends to take the all-natural route whenever possible. But there comes a time when the all-natural route is no longer possible, and it sounds like Apollo is that kid. I’ve been praying for him and you–I hope this is the thing that finally gives him what he needs!

  31. He needs sleep in order to heal, grow, and be healthy. There is nothing wrong with using medication to help him with that. It’s different than what you’re used to, but it seems like Apollo has thrown you a lot of curve balls in his short life. πŸ˜‰ Find peace in the knowledge that you’re doing what is best for him and that you finally have a great team on doctors on your side. Here’s hoping for another restful night for him, and for you as well. πŸ™‚

    Melissa πŸ™‚

  32. I’ll bet the increased appetite actually helped though because you knew when little ones have a full belly they tend to sleep better!

  33. Just curious, how much melatonin are you giving him?

  34. I don’t know if you have one but, If you don’t get one: Video Camera.

    The choking episode? Feeding time? ANYTHING that you feel is important, if you can have someone videotape what he is going through. Even, the way he acts when he wakes in the night. You will have to “double team” sometimes, one person obviously comforting and helping while the other tapes but. video evidence can be a valuable tool in showing doctors what is not seen during a visit.

    • Ooh, good suggestion! Camera phone would work too.

    • bakersdozenandapolloxiv

      Sabrina-obviously I never thought of videoing him while he was choking, but that’s a good idea.

  35. I agree with the comment that said that both you and Apollo still remaining sane after over year of little to no sleep is miraculous. Bodies just NEED sleep! So thankful doctors that are really listening and being wise about priorities right now. Keep stepping forward!

  36. I hope when you give him his much needed sleep meds, you’re saying “1 for you, 1 for me”…I hate to think of you waking up several times to check on him! I can understand your nervousness at sleeping through him needing you, but since melatonin is natural, I think you would wake up if you heard him crying. Maybe once it’s working regularly, you’ll finally get the sleep you need so badly, too! Sweet dreams!

  37. HOORAY for 7 hours of sleep! I hope this also helps conserve some calories for actual growth. Good luck with the new regimen.

  38. I think you have been a wonderful and proactive parent.

    I am curious did they give Apollo Periactin? For my daughter it was a wonder drug. She was so malnourished due to undiagnosed migraine. When two and two made four the doctor prescribed this drug as first choice as it would help in two ways. I was worried etc. The first night I gave Pip the drug she slept so well and woke with pink cheeks. She immediately demanded food and within weeks gained so much weight. Years of sickness and worry fixed overnight. What miracle.

    God bless you all.

    • bakersdozenandapolloxiv

      Suzan, no. No one’s ever mentioned that drug.

      • I did wonder as my paediatrician said this tablet was one of the few appetite stimulants.

        I hope that Apollo and you get much more health giving sleep.

        • bakersdozenandapolloxiv

          Suzan, I went and checked the papers, and it IS the same medicine. One must be the generic name. I haven’t noticed him eating more yet, and he certianly isn’t sleeping more…I’m so glad it worked for you, though!

  39. Renee, I am so glad you are willing to consider options ‘outside of your preferred route’ to help Apollo! I know it feels odd to have to go against some of your
    preferences and convictions, but Apollo’s interest is first and foremost. And it’s not like he’ll be taking drugs for ever! Praise God we live in an age when people who really need a little help from man made medicine CAN get it! We’ll be praying that it all works quickly and little Apollo learns to sleep! He and you all will be SOOOOOO happy you tried it, when it works! Blessings
    Jessica

  40. Renee, Apollo may need feeding therapy now. My Coley had some of the same issues as Apollo. (In fact, I even went so far as to have him evaluated for an aortic arch after hearing Apollo’s story.) After some of Coley’s respiratory issues were resolved, we discovered that he couldn’t chew/swallow properly, either. He went to see an occupational therapist who specialized in feeding issues. Here (on the East Coast) a really good feeding therapist is very hard to find because there is additional specialized training they have to have. But, I will tell you that Coley went from being a child diagnosed with “failure to thrive” to being solidly in the 50th percentile now for about 18 months.

    As for the sleep issues – I just ran across Coley’s Birth-to-three evaluation for feeding issues. He didn’t qualify for those services because, at 22 months, he could hold his bottle. He couldn’t swallow and keep food down though – go figure, right? Anyway – in that report, it was noted that Cole was awake, on average, four times per night and that he never “slept” more than four hours a night. Which meant, in essence, that neither did we. Although I took the vast majority of night shifts with him, my sweet hubby would take Friday/Saturdays so I could get “some” sleep each week. Cole is five now and has only been sleeping through the night (and even now only for eight hours) uneventfully for about a year.

    Quite honestly, the lack of sleep for that length of time has taken a horrible toll on all of us. Cole is just starting to get back on track developmentally and his anxiety (huge social anxiety, in part related to all the surgeries and hospitalizations he’s had) is, finally, beginning to abate. In my opinion, you have to do whatever is necessary to help Apollo sleep. Growth, both physically and cognitive, occur either during, or because of, appropriate sleep. Good luck to you all and we’ll continue to keep you all in our prayers!

    • bakersdozenandapolloxiv

      Michelle- He has a feeding evaluation scheduled for April 10th. I am all for therapy if it will help him eat.

      • Yay! Hopefully it will continue to help your little one on his journey to health.

  41. I am continually amazed at how you hard work to parent all of your kids despite the fact that Apollo needs a huge amount of time and attention right now. You’re doing an incredible job. I’m not religious, but I do keep your family in my thoughts and pray, in my own way, that things continue to improve for your little one.

  42. I will continue to pray for your family. My daughter is a day older than Apollo. I can’t imagine the roller coaster you guys have been on. I think you and Chuck are a well researched parents who are looking to do the best for your family.

  43. We do the best we can. You’re a great mum.

  44. I this what you are doing sounds wonderful and very reasonable. I had some medical trauma recently and was waking up multiple times in the night with panic and anxiety. I was given some medicine to retrain my body to sleep all night. After a few months I was weaned off of it and I’ve not had a problem since!

    • bakersdozenandapolloxiv

      Anna- thank you for sharing this! That helps me a lot.

  45. I applaud you for the choice! I am all about natural medicine, I prefer to use it but there are times when pharmaceuticals are needed. They are at our disposal, God created us as intelligent beings. Scientists have worked and created medications, through their God-given abilities. I am not saying all meds are great, I dont think they are always the answer. But I think they should be considered for sure in cases such as this. So glad you are finding some solutions for him, poor guy needs some sleep! Maybe normal sleep will help him feel less anxious and in the meantime the meds will help him with that as well.

    • bakersdozenandapolloxiv

      Jo- I’m not against meds in general…it’s just a bit strange to consider giving them for sleep. I haven’t tried the anti-anxiety medicine yet, but we had another bad night, so I think I’ll be trying it soon.

  46. Sarah Kolacki

    You are a wonderful mom. You are doing a great job. Hugs and prayers to you.

  47. I think you are wonderful for giving Apollo these drugs even though that’s not your way of doing things. As you said, this is not a regular case of a kid not sleeping, but a toddler with serious sleeping (and other) issues. Be kind with yourself!!

  48. I don’t think you are a bad mom at all! This article was extremely helpful and it is great to know we are not alone! I have a 22-month-old who wakes for 1.5-3 hours every night to play or cry in his bed between 1-5 am. It is so frustrating as he has done this for his ENTIRE life and we are out of ideas. He doesn’t have any medical reasons for this waking that we have been able to find. He is an insomniac. I gave him melatonin tonight as a new effort to get him to sleep. He is cranky and tired all the time and his doctor suggested Benadryl for 2 weeks before bed. That didn’t work and I feel weird about giving a really strong drug like that anyway. When researching if it is okay to give melatonin, there are such strong opinions that go either way and I hope I just did the right thing. I don’t want to give him nightmares or affect his normal hormone production, but his waking up EVERY night is affecting my entire family and I don’t know what to do. Thank you so much for a well written article. It means the world to know other parents are in the same boat.

  49. […] {You can read about his first visit to the sleep specialist here. Unfortunately, we didn’t solve his sleep problems, but did discover why he couldn’t eat. I also find in interesting, in hindsight, that he had a serious choking incident just 3 weeks after his surgery..} […]

  50. Wow I’m having an eye opening moment reading all of this. My two year old has never been a good sleeper. He also chokes on food a lot and ends of throwing up all over. Lately he won’t go to sleep for a good 2 hours after we start trying to put him to sleep. We are all miserable! Did you ever find a reason for the choking? I’ve been to the dr several times about this. He is on reflux meds again to see if that helps but it doesn’t seem to. We are really desperate over here!

    • bakersdozenandapolloxiv

      Tiffany- thank you for commenting. We spent over a year searching desperately for an answer. Apollo was diagnosed with a double aortic arch at 18 months old. He had surgery to correct it at 20 months and still couldn’t eat πŸ™ At 22 months we found he had a residual diverticulum (basically pouch from his aortic arch) pushing on his esophagus. He had a g-tube placed the next week. In October 2012 we took him to Texas Children’s Hospital there where the surgeon essentially redid the first surgery and freed up his esophagus! It now hangs free and we are working to teach Apollo to eat enough so he no longer needs the tube. Did you click on Apollo’s Story up top? It has the condensed version of his journey and links to relevant posts. Feel free to email me if you have more questions.

  51. I stumbled upon this entry while searching for information on giving toddlers melatonin. I plan on speaking to my daughter’s pediatrician about it, but I fear she will reject the idea because she has never recommended this use.

    It was eerily ironic to see that your child has a heart defect and has had surgery, just as mine has had. My daughter’s heart defect was undetected until 3 months of age and she had corrective surgery at 5 months old due to such serious failure to thrive issues (among other issues such as feeding, breathing, and heart enlargement to name a few). After her surgery, she struggled to sleep (this is a gross understatement).

    My husband and I have tried many “sleep plans,” none of which were able to provide our daughter with a long-term solution. It’s very frustrating to us that we haven’t found a doctor that is willing to recognize that she has a problem with her sleep patterns, and not just that she doesn’t know how to “self soothe.” Just writing those two words makes we want to SCREAM! I am so sick of hearing that. She falls asleep really nicely these days, but still wakes up at or before the 2 hour mark. That is not right.

    I definitely believe that she is a kid that doesn’t require a whole lot of sleep. Now, at a little over 2.5 years, she no longer requires a nap. This has made falling asleep at night MUCH easier, but she still doesn’t sleep in long enough cycles. I, myself, was a pretty weird sleeper as a kid, but my mom said I would at least sleep a long chunk (like 4 or 5 or 6 hours) before waking up during the night.

    Our daughter has no suspected neurological issues, so her neuro-cardiac care team has no reason to believe that something like this is causing her strange sleep patterns. I find it very annoying that the sleep doctors within my daughter’s healthcare/hospital are not trying to study sleep in children who have had cardiac issues that required surgery, or just children who have had surgery in general. The developmental pediatrician told us that if we didn’t at least try some sort of “ferberizing” the sleep doctors may not even want to explore any other sleep “issues.” That is such BS. Nevertheless, we did try a nicer form of us this when she was around 12 months and it worked…. for 2 months. ha! I may try and make an appointment just to see if there is ANYONE who is willing to move past the “self soothe” theory and help my child.

    I’m so sorry for the random book, but I can’t tell you how much relief this gives. To find someone else “out there” is helpful. Thank you!

    • bakersdozenandapolloxiv

      Billie- Thanks for the comment. Sleep plans definitely don’t work for some kids with major medical issues. So interesting about your daughter’s heart defect. Apollo’s wasn’t diagnosed until he was 18 months! He really needs the sleep or he is tired or cranky.

  52. I have a 3 year old daughter with special needs and it seems every night she is waking up as well. We put her pacifier back in and she will settle down but then 2 hours later she’s back up. She doesn’t self-soothe well so she ends up in bed with us eventually but lately she is even tossing and turning in bed with us, which isn’t making for a good night for anyone! I have a 3rd baby due in May 2013 and I am thankful for your post. I am looking into melatonin as well.

    • bakersdozenandapolloxiv

      Kellee- we used it for nine months, then stopped recently after a few blog readers suggested perhaps it was the cause of his nightmares. I just began giving it to him again. Without it he is up until ten or later at night and I am exhausted. He’s still not sleeping through the night.

      • As someone above me said, I happened upon your blog researching melatonin for my son. Although he never had surgery (was hospitalized for a week at 2 1/2 months old with a serious GI infection which stopped him from BF – thankfully he latched right back on the second we were allowed), he has always been a terrible sleeper. Up off and on all night wanting to BF, will stay up later each night if allowed & the Sun just has no effect on him as far as resetting his “tired” time. He never really napped even as an infant, except when he was in daycare & that just made his sleeping worse.

        I actually feel sorry for him as he lays there & I know he just is not tired. I have given him the melatonin here & there out of desperation – the pediatric sleep specialist I saw said not to (when I contacted her a couple months after she said if he didn’t have apnea/asthma.etc. she couldn’t help him), but my sleep doctor said it was completely harmless.

        But anyway, the real reason I decided to leave the comment is that I originally gave him the Vitamelts ones that are 3mg & he would go to sleep within 15min (like it was a sleeping pill, which supposedly is not the way it is supposed to work & to me proves he has a hormone/chemical issue) but often sleep fitfully and actually complained about having nightmares. I am now struggling to get him to Head Start every day and again out of desperation am using the melatonin occasionally, but I have literally quartered the pills. He still gets to sleep, but it seems sounder & while he still fears the nightmares, he really doesn’t seem to have had one on the lowered dose. I have never given it to him for more than a few days in a row, so cannot speak to that, but if u ever do need to try it again I would suggest trying a tiny dose & upping it until you see what works to get him to sleep & perhaps you will find a low enough dose that doesn’t seem to trigger the nightmares.

        I also must say, I was unfortunately not surprised to see you feeling the need to ask those who want to bash you for giving him meds to just move along … I was just amazed/appalled/disheartened by the comments on another person’s article where the majority of commenters were acting like sleep is optional. Things like “motherhood is hard, deal with it”. It’s insane. Sleep deprivation is literally a torture device. To act like anyone can just have it deprived for months, yet alone YEARS, and still adequately function is …

        Anyway, I just had to comment, thanks for the blog post and I hope things are getting better !

        • bakersdozenandapolloxiv

          Angela,
          Apollo has been taking melatonin for two years now, and is sleeping much better. We are weaning him down and now give him only .5 mg per night. I agree, it worked more like a “sleeping pill” on him, with him falling asleep with in 30 minutes or so. And yes, sleep is not optional and he was miserable! He is feeling much better day and night these days

  53. I can’t beleive I am reading this. I too have a toddler that won’t sleep and was considering melatonin but the big thing is vascualr ring and choking. My husband is 56 years old and for the last 5 years he would choke when food got lodged in his throat, esp steak. My neice is a speech pathologist who suggested a swallowing study. He did that and low and behold he too has a vascular ring and an abarent artery that went behind his espohagus and cause him to choke. He had surgery this summer which I can get into if anyone is interested but thought that since vascular rings (Kommerell Diverticulm) are so very rare I never thought I would be reading about another person with one.

    • bakersdozenandapolloxiv

      Wow! Thank you so much for sharing. I *just* started a new blog, a place to gather information and stories to help other families. It is: http://www.doubleaorticarch.wordpress.com. Would you mind sharing your husband’s story there? You can send me an email: bergerondozen (at) yahoo.com

  54. […] the surgery, it was taking Chuck and I both hours to get him to sleep at night. The melatonin was prescribed by a sleep specialist at Seattle Children’s Hospital. Going back and reading that post, I’m shocked that the […]

  55. […] five or six hours…but he’s never Slept-Throught-The-Night.Β He began taking Melatonin at the recommendation of a sleep specialist back in March 2012, after his first heart […]

  56. I know this is an old post but I really hope things got better for you πŸ™‚ my son is also a non sleeper (he has several problems too). Typically he will go to bed around 8pm. Then he wakes every hour until 10pm then is up for 4-5 hours. Nothing works. He’s 2 years old and me and my partner are at our wits ends. We spoke to our doctor today who unfortunately can do nothing so we’re going to speak to his paediatrician to see if we can go down the drugs route. I feel like this is our only option now πŸ™ he’s been like this ever since he wae a baby.

    • bakersdozenandapolloxiv

      He is doing better than when I first posted this, but he still doesn’t sleep through the night πŸ™ Melatonin helps him fall asleep, but he still wakes frequently. Best of luck with your little guy!

      • Thanks, good to know he’s doing a bit better. Hopefully he will fully sleep through soon πŸ™‚ We are currently using aromatherapy (lavender oil and vervain) to see if that helps our son.

  57. Hi i just started my asd with melatonin. It helps him fall asleep but he’s wide awake after 5hours. Please share if you found any solution to this.

    • bakersdozenandapolloxiv

      The melatonin helps him fall asleep, but he still does not sleep through the night.

  58. You are a wonderful mother your child is blessed to have a mother like you. I’ dealing with same issue 3yr old never has had routine sleeping pattern

  59. I’ve just started my son on 125mcg Melatonin. It used to take up to 2 hours to get him to sleep. Now he is restful enough to fall asleep in about 20 minutes. He pops right awake at 6:30 every morning, though. It’s been a HUGE stress reliever for us.

    • bakersdozenandapolloxiv

      It has worked wonders to get our son to sleep! He is now 3.5 and still takes it most nights. Glad to hear it is working for your boy too.

  60. […] of melatonin, Apollo takes it, as prescribed by his doctor. We have been slowly lowering his dose for the past year or […]

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