Back in May, my son was diagnosted with Apnea and Restless Leg Syndrom (syndrome). Today I went back for the results from his second sleep study and I was told that the Restless leg has improved, but it is still there. We have raised his iron levels and now have to maintain it.
The apnea has not changed, which if of concern. My doctor says there isn't much else she can do, and wants to have my son's hearing and speach checked to see if there is a developmental problem...if so, I would have to go to an ear, nose, throat doctor about his adnoids. If there is no problem, she mentioned giving my son melatonen.
At this point I am extremely frustrated, confused, and at the very least, upset. I don't know what else to do for my baby. I need advice. Last night, it took my husband and I at least 2 hours to get him to sleep, laying on the floor in his room, in his bed, whatever...one of us would lay there and pretend to go to sleep, the whole time, my son sits there and watched us. SO we brought him in our bed, laid him down, we got in bed, closed out eyes to go to sleep, and what is he doing? He laying on huis back starring at the ceiling! Once he finally fell asleep, he had to have woken up at least 4 more times, repositioning himself to get comfortable. He's all over the place, cannot get comfortable easily. I feel soo bad for him, and I'm soo tired from being up with him every night. I give up! Someone please give me hope that he will get better...and HOW!!
Does he take long naps during the day ,some children that do cannot sleep easily at night, make sure he isnt getting too much sleep, also dont feed him before bed this will make him alert, read him stories, take him to his room ,tuck him in and leave the room , if he yells thats okay,you know he's okay, if he comes out of he room take him back, you are giving him what he wants by being there ,break the cycle and he will get used to sleeping alone.
You need a second opinion with maybe a pediatric sleep specialist or neurologist and an ENT. Is there ever a time that it is ok to just ignore sleep apnea? It does not just go away, and can cause health problems and cognitive issues as well as behavioral issues in children.
I'm guessing since you mentioned seeing an ENT that it is obstructive sleep apnea, and not central sleep apnea. It is not uncommon for children with large tonsils and adenoids (adenoids) to have OSA. And sometimes there can be structural issues in the throat that can cause the airway to narrow. It depends on why he's having breathing obstructions what treatment would be effective. For my daughter it was removing her tonsils and adenoids (adenoids). It took me till she was 9 to break down and agree to the surgery, but she was so miserable I had to try to help her.
As far as his leg movements, treating the apnea may help, maybe not. There are meds for them but putting a child on them would be a very tough call. Healthy sleep is necessary to a healthy life. Please do not give your child anything to help him sleep that would relax his throat muscles more or make him less able to respond to the apneas by fighting to breathe again.
Until you see another doctor(s) it MAY help some to have him sleep on his stomach and elevate the head of his bed a few inches (NOT by putting him on pillows).
You may end up having to postpone the stress of getting him to sleep in his bed until there is some resolution. Can you put a cot beside your bed so his restlessness isn't quite as disturbing to your sleep? With your child having OSA and RLS, he is probably utterly miserable at night, and he's not going to be in any kind of mood to be compliant. Crying till he gets congested could make it even harder for him to breathe.
Talk to doctors until you are satisfied with the answers. For your little one's well being as well as your own, keeping pushing forward. There is reason for hope. Just kinda hard to see it when you're exhausted and worried.
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