5 yr old child apnea? Opinions/advice please!

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5 yr old child apnea? Opinions/advice please!

Postby sholow » Tue Mar 03, 2009 11:07 pm

I am wondering if I could get some opinions or advice please. My son is 5.8 yrs old and incase it is relevant he has been dxed with hf autism, a seizure disorder, mood disorder, alopecia, intoed gait/joint instability, adhd and a few more abc's! He does not have any allergies that I am aware of besides rubbing iodine which creates horrible burns on his skin. Hes had alot of ear infections in the past.
His sleep apnea started abruptly with absolutely NO snoring in the least since me giving him a medication prescribed by his doctor for aggression. As soon as he fell asleep (drowsy side effect) on his first dose he began the horrendous apnea and since then its been coming back and going away. It lasts for a couple months or so the leaves for a couple or so then comes back etc etc. It has toned down in severity and sometimes would almost go away whenever he was treated with antibiotics usually because of an ear infection. His tonsils never really looked gigantic besides being kinda inflamed or large and usually WAS red but certainly not real enormous or anything. His ENT suggested we take them out or do a sleep study and then decide. We ended up just having him get a tonsillectomy and adnoidectomy which was actually on the 23 of this month (monday)and his doctor said his adnoids were huge!
So his first night right after surgery was pretty good he was actually breathing ok, then the second night the apnea was SO bad he stopped breathing with every single breath and i got absolutely no sleep whatsoever because i had to constnatly reaarange him and nudge him (which i normall do when he has the apnea but this was EVERY breath he need a nudge). I was really worried but kept reading that snoring is common and even the apnea is right after surgery and will even worsen because of swelling so i figured it prob was within the norm however horrible this seemed. The next morning i realized he had a seizure most likely since he peed the bed and i remember him having spastic arm/leg movements but didnt think anything of it at the time since he normally does have them and they arnt seizures but they were alot more exaggerated.
I called his ENT who said call them in 2 days see if its improved keep doing what im doing (moving him to breath) and take him to the ER if i think i should. Well the next night he was kinda better and each night DID get better. I called his ENT a few days later and said he has improved but he is still have sleep apnea where i have to nudge him and shouldnt this be resolved? And she said they will talk abotu doing a sleep study at his post op (which is going to be 10 d ays after his surgery and this coming thursday).
Long story short im deathly afraid he has the kind of apnea that has to do with the brain (i dont know the name sorry) and have to sleep with some mask! I especially am worried the medication has screwed his brain up and caused the apnea or soemthing! I dont understand why he keeps having the apnea period! Anyone have any similar situation? I am so scared because i recently found out reading pamphlets at the hospital that sleep apnea is the 'adult' version of SIDS! How scary and it can cause all kinds of heart and brain problems. Im almost certain my son has had a seizure on that really bad night after surgery. Its really scary.
Any opinions or if uve experienceed this what was going on? I just keep thinking how could this hit him SO suddenly and then it is not going away (even tho its only been a week after surgery it seems off to me like something still isnt quite right).
Thanks!
Last edited by sholow on Tue Mar 03, 2009 11:21 pm, edited 1 time in total.
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Postby Vicki » Tue Mar 03, 2009 11:20 pm

Sholow,

I moved your post to the pediatric forum where the great parents of all of pediatric patients can give you some support. These kids have different issues than the adults on the other forums and so these folks will be better able to understand your sons' issues and help you.

Vicki
Being defeated is often a temporary condition. Giving up is what makes it permanent.
Marilyn Vos Savant

That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.
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Postby sholow » Tue Mar 03, 2009 11:23 pm

Sorry and Thankyou Vicki :-)
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Postby TiffanyAcuff » Wed Mar 04, 2009 1:52 pm

Sholow,

First, take a deep breath and try to relax just a little bit. Panicking won't help your or your sweet son. Second, stop googling sleep apnea. There is so little reliable information online about central sleep apnea in kids that you will make yourself crazy trying to understand it all.

Okay, now let's attack some of these concerns...

I don't know if a medication for aggression would cause or aggravate central sleep apnea (the sort that is in the brain, not obstructive). However, I can tell you that everytime our dear son Isaac has immunizations or Versed, his apnea is greatly exaggerated and we have to watch him like a hawk! There are neuro side effects possible with both of those things, and it does seem to affect Isaac.

I would certainly be talking to the pediatrician and ENT to get him into a neurologist ASAP. Given all of his other diagnoses, I am going to assume he already has a neurologist. One that specializes in sleep disorders in children would be ideal.

You mentioned seizure activity. Does he also have reflux at all? Both can be causes/aggravators of central sleep apnea...

So, central apnea can be one of two things. I want you to have a good understanding of what it is, so that you will be better able to cope with the episodes.
1. Your brain can sense that there is a danger of aspiration into the lungs and actually tell your body to stop breathing (this can be because of obstructive apnea, tonsils, tongues, reflux, etc...) and when it feels that the danger has passed, it once again tells the body to resume it's regular breathing rhythm. Usually treating the "aspiration risk" will take care of the central apnea.
2. Your brain actually relaxes too much with the rest of the body when sleep arrives. When it relaxes too much, it forgets that it needs to remind your lungs to inflate and deflate. This is apparently treated pretty effectively with C-pap or Bi-pap machines. Both force the body to breathe even if the brain doesn't remember to fire the signal.

I hope this helps you..If he hasn't been tested for reflux, then I'd recommend checking for that (with a pH probe, not an Upper GI) and also to figure out if he is having seizures in his sleep. If he hasn't had a sleep study, then you need to kick and scream until someone orders one. They are expensive and time consuming, but well worth the time and money spent on them...They will give you a better picture of what his sleep looks like, not just whether he has apnea or not.

Keep asking questions...There are a lot of us here that have been there and done that and can help you walk through it, too!!

Tiffany, mom to an awesome nearly 3 year old who can read, but not remember to breathe when he sleeps...and to baby #2 due any day now!
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Postby sholow » Wed Mar 04, 2009 4:58 pm

Thanks so much Tiffany for your response! Last night he had no apnea and slept quietly. I am excited but trying not to get too excited because of his pattern of apnea going away even daily sometimes. But now I am worried he is still having apnea that doesnt make any noise! I didnt know about this. His apnea has always accompanied loud snoring and figured they were one and the same.
He does not have any reflux that i know of but now i am wondering. He eats only a limited array of foods like certain crunchy foods but this is because he is sensitive to food textures but he has vomited a few times in his sleep but this was during a period in the beginning when he was dxed with seizures so i think they were probably related (the vomiting) to the seizures since he doesnt have them anymore. it was only a few times but hed sit straight up and vomit (usually). I will look up reflux. I am wondering if he has had some apnea that wsa just quiet and i never noticed and now it is worse after the medicine maybe it irritated his adnoids or something and made the apnea worse.
Its strange because when i was younger (and even now once in awhile) i will forget to breath while i am awake.Usually if im deep in thought or extremely relaxed I will notice only when i feel like im going to pass out and make myself breath. Ive asked a few people if they have that and they look at me like im crazy.
I didnt know seizures could aggravate sleep apnea. I havnt really talked to his nuerologist about his apnea too much i figured they were seperate. I did mention he is getting a T&A at our last visit but thats it. I will speak with him about it. Im pretty sure he doesnt specify in sleep disorder but i will see. We have to trave eitherl out of state or 6 hour total drives for all my sons doctors because the town we live in is lacking in docs who specialize in kids.
I will make sure he gets a sleep study done to see what may be going on and have his reflux tested as well. Thanks so much! Im so glad i found this board!
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Re: 5 yr old child apnea? Opinions/advice please!

Postby ApneaKiwi » Wed Mar 04, 2009 5:55 pm

hi sholow

I am not a parent or a medical or sleep professional, but a person who has sleep apnea who has tried to find out what I can about this condition. I also have experience around kids with autistic spectrum disorders, including asperger's syndrome, which as you probably know has some similarities to HF autism and ADHD. I understand that mood disorders and gait differences can also be a part of these disorders.

I wanted to let you know that kids your son's age can have obstructive sleep apnea, and/or central SA, hypopneas (diminished breathing flow), and/or upper airway resistance. Until your son has the sleep study you won't know what mix of these he has. His symptoms may have started with the medication, or may have worsened and become apparent since then. It's probably impossible to tell if someone is having hypopneas or airway resistance from looking and listening, especially without being a health professional. The measurements they take in the sleep study will show what is happening when he sleeps - and if he needs various types of measuring on different nights he should get that - there are ways to do it at home. And if the medication caused his difficulties or worsened them, we don't know whether it did any permanent harm... often things improve when the medication is stopped. Treating the apnea could well reduce the need for the meds too.

I think the brochure you read in the hospital isn't very relevant here... although I know you were just trying to find out about apnea to help your boy. There is a huge push to make adults aware of the long term risks of untreated apnea, because many people think it's not so bad and it doesn't need active treatment. So the mention of the effects on the heart and brain are part of those scare tactics aimed at a different audience, who often already have those effects underway. The reference to SIDS was probably just to try and explain the concept of an apnea to people who know little about it... for many members of the public I guess SIDS is the only similar thing they are aware of. But it is very, very different. The cause of SIDS in many cases remains unknown. Because your son will have a sleep study soon and get treatment, any long term effects he might have otherwise suffered, should be prevented with treatment - which is great news.

One clue that there may be obstructive apneas involved is that he improved on antibiotics. This could have been reducing the size of his tonsils and nearby structures probably inflamed by chronic infection. The red appearance is of course another sign of infection.

In hindsight, it would have been better if the doctor had kept him in hospital for 2 nights, because breathing problems are a known risk following anaesthesia, especially in suspected sleep apnea, and so is inflammation and swelling of the airway caused by the actual surgery. There are some handouts on this website for future reference for all of us - people with any sleep breathing disorder should not have day surgery/outpatient surgery. We should be kept in overnight at least, and observed for any decline in breathing. Even being left alone in the ward is a risk, so having monitoring with an alarm is advisable. We also usually feel better with oxygen on overnight - I know I do, it keeps my oxygen saturation up at 97%, my awake level.

You probably already know that his sensitivity to food textures is probably related to the HF autism. You are on the right track with the reflux - it can be silent, it can also irritate the adenoids... its even been known to get into the inner ear in some cases. I also forget to breathe sometimes when awake, some of us here do... i also get looked at like i am crazy when i say that :)

Good on you for getting him tested... it's totally understandable how scary it is at first... as you get more information from the studies and doctors, hopefully you will be able to not worry as much... knowledge is power.
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Postby shelee » Thu Mar 05, 2009 8:48 pm

After my dd (8) had a T&A a couple of months ago, her sleep was much, much worse for a while. It's normal for them to sound awful following surgery of that kind because of swelling and trauma to the airway. We were told that it would be 2-3 months before she had healed enough to tell whether or not the surgery had been successful in fixing her sleep issues. I would definitely make sure that your son is scheduled for a sleep study as soon as he's healed from the T&A. That's the only way to tell for sure what you're dealing with.

There are lots of meds that can cause/increase the severity of sleep apnea. My dh had severe apnea to start but after his pain meds had to be increased his AHI went into the markedly severe level (90). Everytime my ds (4) gets sick (like with pneumonia), his apnea gets worse as well. He has central apnea (as well as obstructive and hypopneas) which is what I think you were talking about being concerned with. His pulmonologist prescribed a Resmed Adapt SV vpap and as long as he wears that at night his apnea (all forms of it) is under control. It's not as bad as it seems. It's treatable, unlike many conditions. Make sure that you've got a good doctor and that you agree to another sleep study 2-3 months after his surgery. Hang in there.
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Postby ApneaKiwi » Fri Mar 06, 2009 1:34 am

hi shelee, i was just thinking, if its pretty clear that a child has sleep disordered breathing, wouldn't it be better to try CPAP sooner than 3 months out? that seems like a long time to go without therapy, particularly when their learning is so important. adults who have T&A seem to be able to start back on CPAP at about 14 days post op i think? (if all goes well of course). i know that a sleep study would not be accurate until a decent amount of time, but i was just wondering about CPAP...
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Postby sholow » Fri Mar 06, 2009 4:34 pm

Thankyou everyone for your replies!

Apneakiwi, my son has been diagnosed all over the spectrum including aspergers syndrome so who knows what really going on! I am aware that his problems with food textures are common with asd too. He has expanded his variety to include a few more thing thankfully :-) The past couple of days he hasnt had any snoring or apnea which is great! I did try to listen for any silent apnea episodes and didnt find any so far but I am making it a goal to monitor for awhile. I am wondering if they have become apparent after the medication as well which I discontinued after the first initial dose because of the apnea and drooling he experienced while awake, I guess wel see. I told his ENT that the apnea/snoring has went away past 2 days and he said it was prob. just alot of swelling going on but to call and bring him in first thing if it comes back at any time and they will do a sleep study so i feel secure in that! So I am watching and listening like a hawk!
He went in for his surgery at 6 in the morning and was home by noontime, thats how fast it was. At least I can let my sister in law know she should keep my nephew in the hosptial incase of breathing difficulties since he been havign sleep apnea as well. The reflux is possible because often while eating my son will spit something out, sometimes gag and say it suddenly tastes yucky so im wondering now. I wonder if I have a mild apnea problem or just have lazy breathing signals kick in once in awhile or maybe apnea is inherited? Can central sleep apnea come and go or wax and wane etc.?
Shelee, Im glad ur daughters feeling much better now thats great! It seems apnea may run in families? I had no clue about this. I thought the medicine HAD to have aggravated something if not caused the apnea but everyone doctors and friends all pooh poohed the very idea.
His doctor told me he will probably take 4 or so weeks to heal but to call him if any apnea starts no matter when so I wont argue with that because I def am a worry wort!

Thanks again!
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Postby shelee » Sun Mar 08, 2009 5:22 am

hi shelee, i was just thinking, if its pretty clear that a child has sleep disordered breathing, wouldn't it be better to try CPAP sooner than 3 months out? that seems like a long time to go without therapy, particularly when their learning is so important. adults who have T&A seem to be able to start back on CPAP at about 14 days post op i think? (if all goes well of course). i know that a sleep study would not be accurate until a decent amount of time, but i was just wondering about CPAP...



This is just what we were told.... Other doctors may say something different depending on the child. After my ds had been on the vpap for 2-3 months, he went in for surgery to repair a sub mucous cleft palate (along with a couple of other things in his mouth). His pulmo and ENT both said that he would have to be off of the VPAP for at least 2 months in order for his mouth to heal. His average AHI when he's not being treated is 11 so we know that he needs treatment, but the pressure from the machine could cause damage if it's used too early. He was hooked up to an apnea monitor for 3 weeks following surgery (until I was comfortable with the way he was breathing). It was just something we had to deal with. Also, following a recent hospitalization for aspiration pneumonia, our ds came home on oxygen because he's unable to use the VPAP anytime he's dealing with respiratory issues since the risk for aspiration is even greater at that time. It doesn't treat his apnea like the VPAP would but it at least keeps his o2 sats up above 84....

I was told the same thing when our dd had a T&A. She didn't have to wait quite as long as her brother but she also had complications from surgery (vomited 2 cups of blood 2+ weeks post-op) and it could have been much worse if she'd been using her CPAP. Basically, I think it comes down to the particular child and their doctor. Don't do anything (like use CPAP) without getting permission first. I'm dealing with two medically complex children who may or may not respond the same way that your children respond.

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