Sleep study results &

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more.

I took difficult child to the sleep study place to get the results today. He slept through most of it (again). End result he does have sleep apnea-fairly significant. During his deep sleep he stopped breathing an average of 9 times per hour and his oxygen level dropped to 84 (they like at 95 I think) twice. In adults that wouldn't be such a big deal but apparently they don't like to see it in kids at all.

They gave us a c-pack (not sure if that's how it's spelled) mask to take home and get him acclimated to it. He is not to wear it yet at sleep. Then he has to go back for another night at the clinic where they will be sure they can get the right pressure of air for him.

They also want us to take him back to the ENT that did his surgery removing his tonsils and adenoid to see if structurally they could do something surgically with his passage way-apparently it is very small.

He also needs to start taking nasonex every night to maybe help some.

That's the sleep study part.

He has continued to be a pain and seems to be ramping up even more. We met with the in home people and decided we really need to start changing some things at home-his consequences are going to start being toughter. It is going to be pure misery at first but needs to be done. I think due to his violence that it has been hard to focus on some of the other issues (like was mentioned in my last thread)

He has been moderately violent the past two days and earned "Stop the World" twice. Tonight he was so angry he dumped his night time medications down the drain! Now-how do you deal with that? We are thinking of taking away his wrestling tournament for this weekend.

During the stop the world tonight he was driving us crazy. Since he can't play video games, tv, etc... he wanted to read some of his books. He only reads at about a first grade level. We said read by yourself or lay down and go to sleep. He followed us everywhere even though we told him it would extend his consequence because during "STW" he isn't supposed to be hanging around with us-he's just so dependent.

Sorry this is long and I didn't even get to how absolutely down I'm feeling right now-just really sad and fed up-I'm so tired of dealing with difficult child right now-I love him but his level of disrespect has me worn down. I keep feeling like more and more is getting added and what is going to be the straw that breaks the camel's back?

We'll keep on plugging along but I sure wish I could get a break away-husband needs one too but right now it just isn't going to happen.

Sorry another long post-yikes!

 

[Jena]

Sharon
I'm glad you got some answers, and they have a plan as far as the sleep study and what to do now thing goes.

Yet i'm soo feeling like you need a breather, a break, a vacation with-maybe a drink with a umbrella in it?? Any chance you can get a break this weekend and get out?? It does take a toll and that kinda stuff eats away at you. I'm sorry it's been a rough run and yup you just keep on pluggin away. I admire your resilency i really do.

What types of things do you want to implement at home as far as tougher misery thing have you thought of any yet??

I hope you get some rest tonight.

(((hugs)))

 

[tiredmommy]

{{{Sharon}}}
Sleep apnea and other sleep disturbances can cause significant behavior issues in kids. Hopefully he will calm down and be the fine young man we know he is with proper treatment.

 

[klmno]

Geez- what a lot on your shoulders. I hope getting a better night's sleep will help him be a little calmer during the day- once they are able to help him with that. I'd think it couldn't be good for his disposition, much less good for him physically and cognitively.

Of course, that doesn't help you feel any better right now, I guess. I understand what you mean about it wearing you down. When my son seems to be trying his best (I guess that's when he's stable and really trying to stay on track), I feel like I could never give up on him. But, after so many days- weeks now- of instability, intermixed with times of aggression, I feel like I've been run over physically and emotionally and that I don't have one ounce of energy left in me. Then difficult child wants more attention from me because he really can't communicate much/socialize with anyone else right now (it's not like difficult child's make a lot of friends during these phases, right?), and I just want to close myself off from him and everyone else- except this board.

So, I get where you are coming from. It sounds like your son is more dependent upon you, too. Can you and husband get any respite at all? I don't know if I'd make him miss the tournament though. Maybe drop him off and you and husband go out for coffee or something....are you mad at easy child? Maybe you could pay easy child to stay at the tournament and videotape it??? Ok, I guess that might be wishful thinking for you...

 

[gcvmom]

I was just going to echo what TM said about sleep deficits causing behavior problems!

I know how tired of this you are feeling -- we all go through it periodically, especially when it seems like there's been nothing but wave after wave of problems with no end in sight.

Try to hold on to the hope that once you get the CPAP (continuous positive airway pressure) machine/mask sorted out and he starts using it regularly, he'll feel a lot more rested and hopefully some of the actiing out will improve as well. HOPEFULLY!!!

I don't know what the consequence should be for the medication dumping. On the one hand, he probably really NEEDS to have the physical outlet the tourny would provide, but you also have to send a clear message about his behavior. It just seems like such a far-off consequence -- I'm more inclined to go with something more immediate that would hit the very next day at the latest.

You'll have to tell me more about the CPAP once you've been doing this for a bit because husband is going to go in for his own sleep study and I'm pretty sure he's going to end up with one of these things.

Hang in there!

 

[Lothlorien]

Missy's adenoids were so enlarged that the ENT was quite surprised she was hardly breathing at night. Her sleep issues got better, but that didn't really resolve her behavior issues and didn't resolve her seizures (which the neuro said 'might' help to resolve). She doesn't snore anymore and hasn't had a bad sinus infection (only one) since. She's less tired during the day, though she still takes occasional naps.

It's worth having done, but don't get hopes up that it will resolve the behavioral issues.

Oh, and she sleep walks, though not as much anymore.

 

[LittleDudesMom]

Hey Sharon,

glad you got the results and there is the beginning of plan. Like the others have said, sleep deprevation causes everyone to be on edge - difficult children, typical kids, and adults!

Perhaps this weekend, rather than a big weekend end away which you can't do right now, you and husband should takes turns and give each other about four hours alone. One of you on Sat and one on Sun. Take your time and go to a movie, then a bookstore and sit and relax or something. Just getting a few hours away always seems to recharge my battery.

I think you guys are dong the right thing by beginning to raise the bar for difficult child. It's scary, I know, I've been there too. For a number of years I was so afraid of difficult child backsliding into the raging or deep depression, that I made allowances for things I would never have allowed my easy child to get away with. There are still times I cringe before making a request (which of course he will see as a demand) for fear of what the consequence will be. But as most of us have seen, consistancy in expectations and consequences can often make forward strides.

Hugs to you friend,
Sharon

 

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TM-I'm crossing fingers that this will help some-I know it won't be the cure all but it should help-and if nothing else he will be getting a more restful sleep.

Klmno-You're right difficult child is incredibly dependent on us-he has no friends at this point (some he hangs with at school I guess) so it is rough on him too-not reading-he can't lose himself in a book-Know what I mean?? Parents have to stay at the wrestling tournament so we can't really leave but it was a good thought.

Gvcmom-Yep we are holding on to the hope that it will help. I agree it's a far off consequence-he just has so little going on right now-maybe some serious chores will work. I'll let you know how the cpap works. They said a lot of kids-even adults are resistent. Right now difficult child thinks it's kinda cool so I'm crossing my fingers. I think my husband needs a sleep study as well!

Lorh-difficult child did already have his tonsils and adenoids out-didn't help behavior or stop the snoring. They want to see if there is anything that can be done structurally to enlarge his passage way. I know we were hopeful about the better behavior when the tonsils were removed but it didn't happen.

Sharon-That's a good idea. If we don't get too much snow (we're suppose to get up to 8 inches) we just might do it. If we take difficult child to the tournament we can't on Sunday but we might be able to do both a break tomorrow. I know it's the right thing to raise the bar-I'm glad we have supports in place right now while we do it.

Thanks everyone, I appreciate all the hugs, good thoughts, and ideas. Last night a good friend called and I was shocked I started crying when I was telling her about difficult child's latest. Luckily, she's my boyfriend, and knows all about difficult child and is so wonderful.

The in-home staff are talking about setting a level system up at home. That way we won't feel like we have to be constantly consequencing him. Whatever level he is at will be what privileges he has so it will be more him earning it which I like.

 

[busywend]

I think it is CPAP.

I hope it helps his ability to sleep and his behavior improves!

Fingers crossed!

 

[SearchingForRainbows]

Sharon,

The others have already given you good advice - I just want to let you know I'm thinking of you too and hoping once your difficult child is getting more sleep, his behavior will start to improve.

The one thing you said about crying on the phone when talking to your boyfriend hit home for me. Yesterday, I had coffee with a very close friend (we've been the best of friends for over 32 years), and I started crying too. I think the tears are just a natural consequence of being in a "safe" place and having someone take care of us, even if it's just for a little while.

I'm sorry that your difficult child is being such a difficult child!!! I really like the idea of giving difficult child a level system where he has to "earn" his privileges. In my family, the only thing that really helps is having a Reward System in place. I think you're on to something - If you're constantly taking away your difficult child's privileges, it just fuels the fire in him. on the other hand, if he can visually see how many privileges he has "earned", he might be more willing to work harder to get those privileges. Let us know how it goes.

I hope today is a better day for you. Thinking of you... WFEN

 

[ML]

Sharon this can wind up being a good thing. We could be talking a new baseline here. Once he starts breathing getter things may settle; at least there is hope now. I'm hearing you on the needing a break. I wish sometimes that we all lived closer because we could provide respite for each other. Looking forward to hearing positive results soon!

 

[artana]

Sharon,
My SO has sleep apnea. We found out about it 1 1/2 years ago or so. He was very reluctant to use the CPAP. What we have found is that he is in a better mood during the day, he sleeps less and feels better, and he has been losing weight. All of this just from getting enough sleep.

I bet you will see some improvements after a few days.

 

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Wendy-Thanks-I'm crossing fingers too.

WFEN-I think you're right about the crying. I hope the level system works-difficult child will be resistant-he was when we tried in the past but this time we have more support.

ML-It would be nice to provide respite for one another.

Artana-Wow-great to hear he is doing so well-gives me hope! We have the sleep study scheduled for the 27th.

 

[Kjs]

wow, I never heard of a kid with sleep apnea.

My mom had it for years. She had the machine. I guess it depends on your results as to how much air gets blown in you. She had this machine probably 15 years ago. It was huge. Loud. Had to strap everything on. She looked like an astronaut. Always wondered what if she has to pee real fast. Or get sick...how do you get that stuff off.

I put that thing on once. didn't strap it on. but holy smokes. You know when you have a little baby and you blow in their face how it takes their breath away. Man this machine was forcing so much air at me I could not breathe.

She did get updated machines through the years. You did know if she didn't use it. She could be talking and in mid sentence be snoring. I remember her opening the refridgerator door, leaning over the door and sleeping. She would be so tired. How does difficult child make it. Must be exhausted.

My brother had some type of surgery for this. i only know he couldn't eat. Anything he ate would come out his nose. Don't know how long that was for.

Good Luck.

 

[Marguerite]

difficult child 3 has a young classmate at drama who was finally diagnosed with severe sleep apnoea. She is so bad that she can't be roused to go to school, they even tried (with the truant officer looking on, Mum proving a point) putting her fully clothed into a cold bath, and she STILL didn't wake!

Here's hoping the CPAP works. It should. And as he grows, or they can widen his airways more, he should do better. It can cause HUGE problems with behaviour - difficult child 3's classmate is a big problem because when she's awake, she's almost manic. Her mother thinks she's rushing around all over te place partly out of tiredness, and partly out of fear of going to sleep (because in her sleep, she partly suffocates and her dreams/nightmares are about suffocation). THis makes the little girl very clingy and demanding, when she's not climbing the walls. It's very difficult to discipline this, when there are so many factors not under the child's control.

I'm glad you've got some answers at last, and some daylight at the end of the tunnel.

Marg

 

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Kjs-difficult child doesn't have sleep apena as bad. He doesn't fall asleep while doing active things but if he gets in a car and sometimes watching tv or on the computer he will fall asleep. I'm hoping he'll be willing to wear the mask.

Marg-Wow-A cold bath didn't wake her! I remember when easy child was a baby we tried that once and she didn't wake but an older child? It will be interesting to see if it helps his some behavior some-I'm crossing fingers.

 

[TerryJ2]

I'm glad you got some results. It will help. I know you feel vindicated.

So sorry about the medications down the drain. Grrr.

I hate it when they follow us around like that. Perseverance?

Best of luck. One day at a time.