DS lethargic all. the. time. Ideas?

[APToddlerMama]

My almost two year old son is super lethargic all the time. It is a real struggle to get him to walk anywhere on his own (holding our hand even), get up and play, etc. He looks tired all the time and his little eyes are about ready to roll back any time he puts his pacifier in, but he refuses to sleep. I've posted here about his issues before but basically he has SPD, suspected apraxia, food allergies, and the possibility of ASD. He fights sleep unlike any child I have EVER seen, and I worked in daycare all through college. Any time he starts to drift off, he will abruptly flip over, take out his nuk, start clapping or trying to "sing" etc...anything to keep himself awake.

He has been really lethargic for a long time, maybe a year or so. We are going to be headed to a GI doctor and Neurologist soon, but some basic blood tests (basic metabolic panel, checking zinc, vitamin d, mag levels) were all normal. We spend a lot of time with other kids and it is always so striking to me how much more active they are, especially the other little boys his age. I am also noticing that kids he used to be quite a bit bigger than as an infant are now significantly heavier and also taller than he is. It seems like the change happened as he decreased breastfeeding and increases solid foods. He sleeps very very poorly, and on days when he is actually well rested, his activity level is closer to typical, but still is much more lethargic.

I am just wondering if any of this sounds familiar to any of you, and if it does, if you figured out why your kiddo was so lethargic.

I am also wondering...if you don't suspect sleep apnea, is there any point in doing a sleep study? Is there any other reason he'd be sleeping so poorly? What can they do to "fix" the sleep issues besides meds?

Thanks everyone! I feel like I am monopolizing these boards a lot with questions but it is so hard when you don't know what is going on and I have gotten so much great advice from so many of you.

[sbgrace]

For my son the lethargy was caused by a metabolic condition affecting his mitochondrial function. http://www.mothering.com/discussions...d.php?t=734501

Allergies can cause lethargy and fatigue (as well as sleep apnea). Does he show environmental allergy signs? If so have you tried allergy medicine? I would to see if things change. My other son has had fatigue from allergies when they were bad.

Asthma can reduce activity too as can anything affecting oxygenation.

Thyroid function.

Sleep disorder (worth doing the sleep study imo) to see if anything comes up. You asked what outside of sleep apnea--in my son they were wanting to rule out seizures while he slept among other things.

I'm sure there is more. I'd be concerned by what you described. That said, how much total sleep is he getting every 24 hours on average? If it's way under what is typical for his age I'd do everything possible to get sleep in him and see if that improved things. I'd start with a low dose of melatonin (like .25 mg. up to .5 mg) and see if I could get him to fall asleep.

[APToddlerMama]

Thank you sbcgrace! Lots of good ideas to look into. I have totally lost my faith in the medical community and feel like I have to do my own research. His ped is nice and doesn't give me a hard time about vaccinations, etc., but she is also a little too laid back. His sleep really varies and lately it has been about 9 of 24 hours. My husband's family has a lot of people who don't need much sleep, and that would be fine if he wasn't so tired all the time, but clearly he needs it. I tried the melatonin a month ago and then he got really sick, so we haven't tried it since out of fear that perhaps the melatonin made him sick, but I am 99% sure it didn't, so it is about time to try it again. Thanks for all the suggestions.

[sbgrace]

Oh nine hours is way under average for his age. I'd focus on that with everything I could throw at it.
When Andrew was that age when he was extremely over-tired he'd fight sleep like you described.
I used to melatonin him to sleep at night and melatonin a nap too for a few days just to get him caught up enough to go to regular night sleep. Andrew uses low dose melatonin every night. Otherwise he simply can't settle (now that he's older he'll cry and ask us to help him fall asleep--he was just crazy and silly when he was younger).

Actual genetically wired "short sleepers" exist but they are very, very rare. It's more likely that people are just chronically sleep deprived and/or wired up like your son and Andrew get so that they just don't settle to sleep well because of sleep deprivation. I'm saying I would not assume your son is genetically predisposed to need little sleep. It's highly unlikely statistically and, as you mentioned, he's tired too. I hope it all settles quickly. I decided long ago that sleep was one of the most important things for us to figure out for the sake of Andrew's health and learning. It took a long time to get there/I hope it's faster for you.

[CarrieMF]

has he been seen by a pediatric cardiologist?

[KCMichigan]

I would request a sleep study and/or sleep training from your pedi.

One of my DD has SPD and PDD_NOS. She is very lethargic w/o enough sleep...her SPD is worse and her low tone (hypotonic- mild cp) is even lower and she is barely active. She is low active to begin with because it takes more energy for her to do things. When she is tired, we see way more SPD symptoms and she slumps when sitting a lot or has a hard time standing/walking for a long time.

We found the two things were keeping her awake. The SPD send her system into overload and she could not settle down. We have used a weighted blanket, white noise, and a strict routine and it has helped a lot. The second things was she gets joint pains (growing? cp?) and sometimes we do gentle stretches and Tylonel for her.

We were surprised to find she still needs 12-13 hours of sleep at age 4 .5 (her twin only needs 10-11 1/2). If we deviate from putting her to bed by more than 1/2 hour she is too wired to fall asleep and it takes her forever.

Does he take any meds for allergies? We tried a few different allergy meds and quite a few made her jittery and unable to sleep at all. Currently she takes Zyrtec and it seems to work well. (she has seasonal allergies and asthma).

With increased sleep, you should see better focus and more activity.

I hope you get some answers soon!!

[mrsfru]

Originally Posted by CarrieMF

has he been seen by a pediatric cardiologist?

In addition to everything everyone else replied with, this was my next thought, too. I think seeing a cardio is prudent, even if noone suspects any issues there. One of our ds's problems is an odd cardiac rhythm, enlarged heart, and enlarged left atrium...but we have no answers as to why he has these things. It may contribute to his fatique.

GL!

I understand how tough it is having to fight everyone to help you help your child! Keep up the good work!

mrsfru

[A&A]

has his iron level been tested?

And yeah, 9 hours of sleep is not enough for a 2 year old. Heck, my 7 and 12 year olds still need 10-11 hours per night.

[momofmine]

Originally Posted by CarrieMF

has he been seen by a pediatric cardiologist?

Yes, this was my first thought too.

I also agree about the getting over tired and keeping themselves awake part. I have one who literally keeps himself awake at night because he just can't settle down and is already over tired. In fact, I think I might try melatonin after reading that!

[QueenOfTheMeadow]

Have you talked to his pediatrician about celiac disease? It might be something to look into as well.

[APToddlerMama]

Thank you everyone! I am really short on time today as our computer is down and I'm using a friend's, but will try to answer some questions quick.

He was tested for celiac and iron and both were fine (although he has been off wheat so I'm not sure the celiac testing would have been accurate). He doesn't have seasonal allergies, so he's not on any allergy meds. We have not seen a cardiologist. Eeek...that sounds scary though. Would there be something heart related that would make him fight sleep so much? He is not nearly as lethargic if he gets a reasonable amount of sleep.

As for "sleep training" that was mentioned...does that involve some version of crying it out? What do they suggest?

We will try the melatonin again! more later...

[bdavis337]

Iron - not anemia levels but ferritin levels as well. it's a different measure of iron in the body and sometimes contributes to sleep issues.

[CarrieMF]

Would there be something heart related that would make him fight sleep so much? He is not nearly as lethargic if he gets a reasonable amount of sleep.

anything heart related would not make him fight sleep, but if he has an undiagnosed heart condition & isn't sleeping it can make him overtired & fight sleep due to that. Not all heart conditions are serious & not all heart conditions show symptoms that 1 would immediatly think of heart problem. However being lethargic is a symptom & I would get checked out.

My middle dd has a heart condition that she's being monitored for every 6 months. She will eventually need surgery to replace a valve, they're just trying to postpone it as long as she can. typically for her condition it doens't cause problems until they're in their 30's-40's. IF it becomes a problem earlier it's usually in their teens. She's 9 & the issues started to become more serious 2 years ago.

You would not know to look at her that she has a heart problem. She did need more sleep than her sisters when she was younger & was never as active as they were but nothing that would have caused alarm.

[JessicaS]

I agree about looking at his heart.

They do really non-invasive tests, an EKG which is just stickers all over them and if that shows anything an ultrasound. The tests are not scary and I do think it might be worth it.

Does he have any sort of murmur? How about when he was a newborn? My ds is usually pretty active but he also likes to just hang out in my lap a lot. I don't think it is to the extent that it would be noticeable to those who don't know him.

My ds has a really obvious murmur so he was thoroughly checked out when he was a newborn.

[APToddlerMama]

Thanks everyone. I finally have my computer back today, hence the delay. Anyhow, I will try to convince his ped to refer us to a cardiologist. I can just imagine what she is going to say. I feel like I'm running the show. I keep bringing her articles, etc., saying "can you test for this, can you test for that?" I thought doctors were supposed to be telling ME what we should be looking for.

[APToddlerMama]

An update

I just wanted to post a quick update in case any one else is going through something similar. It appears that the main issue with DS being super lethargic must have been diet. We figured out one more thing that is an apparent problem for him, and within a couple of days, he was a different kid. I am still holding my breath, but it has been three weeks or so now. He is even starting to say some words. Anyhow, just wanted to post this. I know we talk a lot about GFCF and all sorts of diets on here, and I never would have believed diet could play such a big role if I hadn't experienced it. He still doesn't sleep as much as I think he should, or even close, but at least he's not super tired and whiny all day, which I'll take!

[2boyzmama]

What diet changes did you try? GFCF? Something else?

[APToddlerMama]

Originally Posted by 2boyzmama

What diet changes did you try? GFCF? Something else?

Well, we started CF first, and did notice big changes in mood and behavior, but he was still really lethargic. Then we did GF and yeast free too shortly afterwards and didn't really notice much. We had been doing those for four months or so when we pulled rice milk, which we had started when we took dairy out. Oddly enough, rice milk was definitely the lesser of two evils, but rice milk was still a *real* problem for him. I am not quite sure why. I think it was probably the sunflower oil, but don't know for sure. All I know is we are on a much better track suddenly!