Those skinny little arms make me so sad. We’ve worked so hard to help him grow and put on a little weight.
I posted recently that Apollo was doing well and not displaying any of the anxiety that he did after his first heart surgery in March. It seems like I may have spoken a little too soon, however.
Back in March it was very severe. Words such as “pajamas” “get ready for bed” or “brush your teeth” would send him into an absolute panic. He’s never slept well (or through the night) but prior to the heart surgery we could lay him in his crib at night and he would go to sleep. After the surgery it took a combination of melatonin, anti-anxiety medicines and often both Chuck and I to get him to sleep. Over the next eight months (until his second heart surgery) we gradually were able to get him to sleep with just melatonin and one of us lying down with him.
{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 it interesting, in hindsight, that he had a serious choking incident just 3 weeks after his surgery..}
Right now for sleep we give Apollo melatonin with his last feeding of the day (around 7:30 or 8:00) then lie down with him until he’s asleep. That part works out okay. The problem is he’s waking up in terror from nightmares. I am sure this is associated with his second heart surgery because the nightmares began in Houston while we were at the Ronald McDonald House. The first nightmare was about bears. He was terrified and the next day kept saying, “Why didn’t you come, Mama?” Obviously he was having trouble understanding that it just a dream and I wasn’t actually there…
He’s now having nightmares three or four times a week. Even though he’s in bed with us, he’s still scared when he wakes up and unable to go back to sleep. It’s not enough that we are right there with him. He’s also now afraid of the dark. He’s had dreams about his siblings. He’s said “Enoch and Tilly were scary in my dream but they’re not scary now“. He will continue to cry about whatever it is he’s “seeing” until I tell “them” to go away. Then he calms down until he sees “them” again. Almost like he hallucinating. It is very rough going.
At this point I feel like he needs to see someone about it, but I’m not sure who to ask for a referral to. A sleep specialist again? A therapist? A psychologist?
I’m putting this out there as a plea for help. Anyone dealt with this? Any ideas? The poor little guy is miserable at night.
In general, play therapy probably would help Apollo. He’s been through a lot! That said, I wonder what role the melatonin is having? Whenever I’ve taken it I’ve had VERY vivid dreams, which are hard to wake up from. I’m always left with a feeling of half reality–wondering if what happened really happened.
Does he have a “lovey” that would comfort him at night?
He’s been taking the melatonin since March with no problems. He has his doll, Eragon. And like I said, he’s not even feel safe in bed with me 🙁
Poor kid 🙁
It sounds like he is suffering from PTSD, which would not be a surprise given his birth trauma, operations and other procedures, and so many scary things happening to him that are out of his control. I would ask for a pediatric psychologist or psychiatrist who has treated children with PTSD. My friend’s two sons have had PTSD since they were 3 and 18 months, and it still affects them to a lesser or greater degree almost a decade later.
My youngest, who has significant difficulty with sleep initiation and maintenance, had terrible nightmares and night terrors when we tried melatonin. We went to my grandma’s old standby aids–valeriana (valerian) and manzanilla (chamomile). They seem to calm rather than put to sleep, but with our associated bedtime rituals, they get the job done without the difficulty we had with the others. Maybe you could discuss these with your doc or naturopath.
My first thought is to wonder if it is related to the sudden decrease in the fats he was consuming? I’ve read several things about high quality fats (butter, coconut oil, animal fats, etc) helping with anxiety issues because they help stabilize blood sugar and because they help build up the myelin sheath around our nerves. So maybe it’s a side effect of his dietary restrictions and that it might start improving as those get lifted and you focus on adding good fats back to his diet?
My second thought would be to wonder about his magnesium levels. Magnesium helps control the overproduction of stress hormones (among the many other things it does), and many people are deficient. Magnesium is absorbed best through the skin instead of the digestive track, and you can get or make magnesium oil for easy application.
I hope you’re able to uncover what can help him!
I had one of my six children suffer from disturbing nightmares when she was just a little older than Apollo. She also had a history of traumatic experiences and chronic illness. I took her to a pediatric psychotherapist who helped her. The trick is finding a good one. Check with Seattle Children’s to see who they would recommend. There is a possibility that Apollo is hallucinating, though it is rare in people his age. The therapist can help you to figure out what is happening. I think his skinny little arms look GREAT…you did a fantastic job getting him through that major surgery, and he looks much stronger and healthier than I expected he would after what he has been through. You are amazing parents, and siblings!
PS. Nightmares have content and the sleeper can usually remember the content when they are awake, which is what Apollo is doing. Night terrors are common in his age group, but do not have content – there is no dream- they occur at a different time of the sleep cycle than dreams do. This is not what you describe happening in Apollo. He is definitely dreaming, remembering it, and being bothered by the content of the dream.
I used to have night terrors, and they did have content. (Perhaps they were a hybrid between a normal nightmare and a night terror? I always was one for not doing things the typical way.) It was not a matter of simply remembering the dream after I woke up, like with a normal nightmare. It was a matter of not quite waking up right, so that although I appeared to be awake and responded to my parents, I was actually still experiencing my nightmare. (It was more like my parents, coming into my room to respond to my cries, entered my dream.) If you’ve had them yourself, you can easily see when a child is having one. I remember one time when Dad told me something about Jesus being with me, and I told him, “Just keep saying that, Daddy.” We went outside and paced in the cold air until I was over it and no longer seeing monsters (or whatever it was about that time). I had other sleep issues as well, which it seems often accompany night terrors. When my niece started having them, I found that the most effective thing was to take her outside (even if she was afraid of me) and/or turn on the lights — anything I could think of to wake her up. I always assumed she wasn’t really awake until she snapped out of it.
A solution that I have used with my grandchild to help alleviate nightmares is guided imagery at bedtime. One story she likes to hear over and over is Rabbit Dreams by Melissa Hasan (http://dream-and-dream.com/). It is a beautifully illustrated story to help calm and focus the mind on a peaceful sleep.
My younger brother had night terrors growing up, horrible nightmares. After many doctors and a trip to the ER my mother started looking things up on her own. Found out that they were night terrors and are caused by kids not getting enough sleep. She had to be very strict with the schedule so he got a 2-3 hour nap every day and was put in bed early enough at night.
I don’t doubt that your son gets put down for naps or bedtime, but if the not sleeping well is causing the nightmares that make him not sleep well then that’s a problem.
Just thought i’d throw it in there that nightmares causing him not to sleep could actually be caused by him not sleeping!
Though i have zero ways to tell you how to fix that!
Id wonder about the role melatonin might be playing too… My daughter (FASD, OCD, sleep disorder) has taken it off and on for several years, and for most of that time it’s seemed to work well. Unfortunately, over the past six months or so she’s started having terrible vivid nightmares. After hearing from other parents that it could be connected to melatonin we stopped it… and the nightmares have decreased dramatically. Might be worth a try…
I have had the same experience with one of my children and melatonin. At first it was wonderful and then it caused nightmares. I also agree with asking Children’s about a referral to a pediatric psychiatrist/psychologist/psychotherapist. A good one will give you some solid ideas for helping this little sweetie through this.
I would also talk to someone to see if there might be a link to the melatonin, I was told to take 5htp to sleep told it was safe and natural but have horrible dreams and wake in the middle of the night too scared to go back to sleep. Will be praying for you all.
Bless his heart! That sounds a lot like Post Traumatic Stress Disorder. He’s been through so much. And he’s too little to understand that all this pain and suffering have a good purpose. It’s hard enough for adults to understand, sometimes. I have had some issues with suspected PTSD. I’ve never been “officially” diagnosed. It was not something that I could snap out of on my own. Flashbacks and extreme depression were an issue. Also, there was this sense of always being in danger and needing to be ready to fight it. Over the summer, I started going to Christian, Nouthetic Counseling. It has been such an amazing blessing! I was always afraid of quack psycologists. I knew I needed help, but just didn’t know who I could trust. These ladies were such a Godsend. The advice was straight from the Bible, but they also had a good knowledge of medical issues and concerns. I know there are NANC certified counselors all over the country. In fact, I just googled and found two that are in Bellingham. I pray God’s greatest blessings for you all. He has and will continue to lead you, step by step.
In addition, I recently discovered that low levels of vitamin B12 can inhibit sleep and contribute to anxiety. I’m guessing where anxiety and sleep difficulty already exist, it would be compounded by a B12 deficiency.
Prayers for sweet Apollo and for the whole family. I think you are amazing.
The B12 could well be likely given his restricted diet. We are mostly vegan and supplement our little one’s diet with “nutritional yeast”. It’s like a powder and you can get it at most “health food” stores.
I’m sorry I’m asking this question, but you didn’t mention it in your post… Are you praying over him and with him? He’s not too young to learn to pray for Jesus to guide him.
I know the senario is sooo different, so please do not think I am comparing the two at all. And I also realize that my son was older, but when he fainted and then started having crazy nightmares at age 6 after seeing a friend in the hospital not doing so well, we taught him to pray. It took time but it worked. The nightmares abated slowly.
We also taught him 1 John 4:18 “…perfect love casts out fear.” I realize Apollo is much younger, but should not stop you from praying verses over him about fear and asking God to help you to teach Apollo to trust Him and you again.
Also try soothing music. We used children’s Bible songs. Any time he was afraid we would play that to re-direct his thinking.
And I agree with some of the above posters, Apollo does look good. He is an amazing little boy who is going to do amazing things!
Try looking into some play therapy for him
A lot of what you’re describing does sound like night terrors, especially the fact that he doesn’t calm down until you tell “them” to go away. nigthterrors.org helped us a lot when our son (almost the same age as Apollo) started having them. For him it was huge screaming crying episodes where he would flinch and cry and was frightened of everything around him. Best of luck with your guy!
I too say probably psychologist dealing in children with health concerns. He probably needs help working through things and he/she could give you some new tools. I hope you get some help so you can both find some peace and rest.
I read your blog often and was reading about the melatonin. Dr. Oz had a show in last week about melatonin and how bad it is if you are using it as a sleep aid. I also gave it yo my kids and they complained of nightmares. It is a side effect from the melatonin. You should be able to find the show in his website.
I have taken it out of the house as I was taking it also and it really did give me bad mood swings. Although I was taking a triple dose everyday not knowing that an adult daily dose is 1 mg.
Well come to find out its a hormone hence the bad mood swings in all of us that were taking it.
I too saw this show. And it made perfect sense, Melatonin is a sleep regulator used at 1 mg only per night, not a sleeping pill. Melatonin’s duty is to level out the body’s clock in a sense. I have taken Melatonin in the past when working night shift and had similar results because I took it improperly (ie. too much, not at the same time each time). When used properly and “if” your body really needs it, it does work wonderfully. The public has been misinformed that it is a sleeping pill and thus use it to fall asleep whenever they want, and possibly reuse it if they wake up at an unwanted hour so they take another then wake up, or feeling groggy/hung over. It takes approximately 8 hours for one dose (1 mg) to work through your system. I urge you to check out what Dr. Oz had to say about it. I am not an avid watcher of Dr. Oz, I just happened to catch this show and was curious about it since I also had taken Melatonin and wondered what his take on it was.
I feel for Apollo, and you his parents. I pray that you will be able to find the cause of this trauma soon and that it be something simple to correct.
In defense of melatonin: Both our boys (especially the older one) have had a lot of difficulty getting to sleep. Tired, in bed, calm, and just can’t get there, sometimes for an hour or more. We started giving them 250 mcg (0.25 mg) melatonin before bed and it’s amazing — they Just. Go. To. Sleep. The 4 year old occasionally tells us about a dream but they usually don’t seem to be disturbing dreams. The 6 year old had complained about dreams when he got 500 mcg but once we backed off to 250 mcg there are no side effects that we can see.
For us, it has been a tremendous blessing.
Hi Renee,
Does Apollo sleep on his back?
I am in my 30’s and have a very narrow airway. I dream (or have nightmares) constantly until a doctor told me to sleep on my side as it opens the airway a little.
I have found I sleep better and rarely dream if I sleep on my side.
If I roll to my back in the middle if the night I often wake dreaming.
If Apollo does sleep on his back is there anyway you can roll him to side side and place a rolled up towel behind his back so he doesn’t roll back?
See if that helps, it’s worked for me
Good luck
He sleeps every which way because he thrashes around so much 🙁
When our daughter had heart surgery at Seattle Children’s, we were told that small children often experienced surgery as a trauma similar to abuse. I thought it ridiculous at the time because she was only 10 days old but she regressed right back to the womb. I had to carry her in a front pack all the time and she wouldn’t let anyone else hold her. She didn’t smile or laugh much at all until she was about 5 months old. The warned us about depression and it lasted awhile. I watched a family member go through somehing similar after his heart surgery too. I would definitely talk to the pediatrician and see if there is a fabulous therapist of some sort to help him.
This is so weird. Apollo was 20 months at his first heart surgery and *noone* mentioned anything about this! They never had Childlife come see him (we had never even heard of them at that point). How strange that we would have completely different experiences at the same hospital!
Oh no! I thought I had mentioned Child Life to you when you were preparing for his first admit. I certainly meant to. (No idea if it would have made a difference, though, he was in and out of the hospital so fast that time).
I would take him off of the melatonin. It can cause nightmares. I know plenty of adults who have “trippy” dreams when I take it, myself included. Maybe you could try just letting him sleep with you without the help of melatonin. Just a suggestion.
He hasn’t taken it the last two nights and has had nightmares both nights. I wonder how long it takes to get out of his system…
My FIL had terrible hallucinations from the morphine he received during his heart surgery. He wasn’t one to talk about his nightmares, so we don’t know how long they lasted. But the hallucinations/nightmares were so bad he needed to be restrained post-surgery.
I have not read all the replies so apologies for any repeats- nightmares are a side effect of malatonin. Magnesium is useful for ‘staying’ asleep. Have you tried ‘baby/toddler yoga’? Also a cd of soft music (perferably with no spoken words) on continuous loop at night. Good Luck.
You have so many helpful comments, I just have one little one to add to the mix. Our middle daughter had severe nightmares as a toddler/child. The only way I would “wake” her out of them was to run a quick bath. When we finally went to a therapist, we were told that sometimes it is a common “side effect” of a growing mind; connections not quite complete. She did outgrow them. If nothing else is discovered; maybe his brain just needs some time to grow. Maybe?
My guess is that Apollo probably has a little bit of everything suggested going on. He has had quite the year!
Definitely look into play therapy. Part of the problem with early trauma (like surgery experiences) is that children don’t always have the language to describe it, so they don’t know how to process it. Play therapy is a great way to figure out what’s going on inside that cute, curly little head of his.
My sister suffered from night terrors for years as a toddler with no cause behind them. My parents tried everything with her but nothing would work and the terrors just got progressively worse. Not being able to find anything medically to treat her they turned to naturopathic remedies and were told to try Tarentula Hispanica. My sister responded very positively to this, her terrors subdued and went away after a short period of time. This homeopathic remedy was the only thing which worked and it was a saving grace for my parents! If you are open to trying natural remedies I would recommend trying this. In the meantime though I will be praying for you all!
Yep been dealing with something similar since my daughter was 6. She is 10 now and its really no better, it was brought on by deployment but I cant even tell you how horrible it is. she has hallucinations, sleep walks, night terrors, believes in half-asleep imaginations that she comes up with on her own. She sometimes believes that people have broken into our home, or that someone is dead who is not. It never goes away. It comes and goes in severity. I am a dealing with it to the best of my ability as a naturalist. I use herbs, homeopathy, prayer and meditation. She is much older than Apollo and yet she struggles to rationalize. I dont know the answer. I wish I did.
This sounds like it could be a reactive depression or anxiety–that is, he knows his health is unpredictable and is beginning to understand how serious a situation he has. It’s possible a child psychologist or psychoanalyst could help, but I think the type of professional–Freudian, behaviorist–is far less important than that you trust him or her within the first handshake. And that the therapist is very experienced with children his age.
I also would not rule out physical causes. One of ours had a nightmare that was really a “night terror”–the kind where the child is so deeply asleep you can’t wake him. And he screamed, and then once he woke he had no memory of it at all. That kinds of stuff the kid usually grows out of . This sounds like anxiety–and that you need to figure out what’s the best way to treat that.
When one of my children went through something similar with nightmares, a wise teacher suggested that we change the ending. That is, during down time in the day, I would tell a story that had similar issues to the nightmare, but change the ending so that it was positive. Then at bed time, tell it again. After a couple of days, the nightmares abated. I think this just created a new context for his subconscious to use. Interestingly, in some forms of therapy for PTSD for adults, they use a similar method. You can’t change the fear from the surgery, but, via stories, you can create a situation to pass the fear on to another person/animal/angel. Something. His little mind is trying so hard to make sense, so create a pathway for him via stories.
Ava, my 4 year old niece wakes up screaming from nightmares as well, though she has suffered no trauma. My sister tried creating a guardian ‘character’ to help her during her dreams/nightmares. Basically, they made up a superhero (who she called Brian for some reason!) and made up stories about how he would come to Ava’s rescue etc. There was pictures drawn, constant references to him etc and in a way, this made ‘Brian’ real to Ava. After a while, ‘Brian’ started appearing in her dreams, and then in her nightmares. Mummy and Daddy couldn’t be there, but ‘Brian’ was able to save the day on many occasions. He’s sort of like a security blanket, but for the dream work/imagination.
No idea if this would work for Apollo, but it might be worth a shot.
Wow, what a wonderful community of friends you have. I pray some of their advice will help lead you to answers. Poor little guy has been through so much. We continue to cover him in prayer! You as well!
I would ask the social worker in cardiology if they have a pediatric psychologist (meaning a psychologist who specializes in children with chronic health issues) on staff or in your area. Trauma-focused CBT, or cognitive behavior therapy has been shown to be effective down to 3 year olds, with more research support than for play therapy. The behavioral medicine clinic at the hospital should offer this sort of service or similar, and would be familiar with kiddos just like Apollo.
I’m just sorry that you and Apollo have gone up to this point without a referral to behavioral medicine, or at least child life–you’ve been through a lot as a family!
My littlest was having terrible nightmares, but not on a regular basis. Sometimes 2 or 3 nights in a row, or just once every week or so. Regardless of how often, they were terrifying for her and me because it was hard to calm her down, and then she would recall them the next day or even some time afterward. Thankfully it was an easy find, and food related. Chocolate was the culprit, if she has chocolate late in the afternoon or in the evening she will get these very vivid nightmares that leave her sweating and sobbing. Thanks to recalling the days events I was able to link the problem to chocolate topping on icecream after supper a couple nights in a row. I pray that Apollo’s culprit can be found so easily.
In defense of melatonin: Both our boys (especially the older one) have had a lot of difficulty getting to sleep. Tired, in bed, calm, and just can’t get there, sometimes for an hour or more. We started giving them 250 mcg (0.25 mg) melatonin before bed and it’s amazing — they Just. Go. To. Sleep. The 4 year old occasionally tells us about a dream but they usually don’t seem to be disturbing dreams. The 6 year old had complained about dreams when he got 500 mcg but once we backed off to 250 mcg there are no side effects that we can see.
For us, it has been a tremendous blessing.
I’m not saying it isn’t Apollo’s problem — just a gentle rebuttal to the posts suggesting that melatonin is always bad.
Robyn, personally I don’t think it’s the melatonin. He’s been taking it for nine months now and the nightmares began after his second surgery. I am going to give it a week and see if it seems to be helping as a step before seeking some kind of therapy for him. He is having a *very* hard time falling asleep without it 🙁 You did mention Child Life and we have used them when he has been in for the hospital for testing and his g-tube. Sometimes it seems they don’t take Apollo’s case very seriously because his heart issue is pretty minor compared to so many other kids. Unfortunately, his trauma isn’t.
Renee, that sounds like a totally reasonable plan. He’s lucky to have a mom like you, and a family like yours!
On a 100% unrelated note, the new picture at the top of the blog is SO GREAT!
Hi,
It sounds like he is really struggling with what we refer to in our home as “really big feelings that make you feel sad and scared.” One of the most effective ways I learned to help little ones cope with these overwhelming feelings is to put words on them. Describing and validating can go a long way in helping them to regulate their emotions. Because of his health issues, I don’t know if you can do this technique, but I will share it just in case: When my little guy is experiencing overwhelming emotions, I often hold him and start doing some deep and calming breathing. Most of the time, he attunes to me and begins to breathe more calmly and the emotional intensity decreases.
I would definitely recommend having him evaluated by a therapist who has experience with PTSD in childhood. He’s been through so much in his life already that it is understandable that he’d be experiencing anxiety and fears of abandonment. A good therapist can help him, and help you guys to help him deal with this. The hospital social worker can probably help you get a referral, or you can contact your community mental health program to see if they have an infant mental health program.
Two books that I found really helpful, and might be helpful in your situation, are “The Attachment Connection: Parenting a Secure and Confident Child Using the Science of Attachment Theory by Ruth Newton.
and
“The Go-To Mom’s Parents’ Guide to Emotion Coaching Young Children”
My son also has trouble sleeping and we were recommended by his doctor to use melatonin. My son actually had night terrors on it. It’s almost like hallucinations because its like nightmares but they can’t wake up from it. We took him off melatonin and the night terrors subsided. I have enjoyed your blog and pray for you and your sweet Apollo.
Thank you for your comment, Heather. Several blog readers mentioned the possible connection between melatonin and nightmares. I took him off of it for two weeks and he wasn’t falling alseep until 10, 11 or later. He’s back on it with no apparent side effects- other than sleepiness 😉