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Caught Between DME, Doctor and Sleep Lab and Nobody Stepping Up
from a frustrated new user -- any advice would be greatly appreciated: "I had my doctor's appointment today and although I thought I would get things straightened out, I am now much more confused and frustrated than ever. I don't want to burden you any more but I really do need advice. To remind you, I have been having trouble sleeping, getting up every hour or so to use the restroom. This has been going on for 2 week (and before that about 4 weeks of getting up every 2 hours to use the restroom). My DME has been reluctant to do anything to help me after changing my mask twice and getting past the first 30 days of my having the cpap machine in possession. At my doctor's visit today, I found out that my doctor does not want to take any more responsibility for my problems with using the cpap machine, as she referred me back to the DME or the sleep clinic. It seems that the doctor, the DME and the sleep clinic are giving me the impression that they have done their parts in regards to getting me on the cpap machine. For example, none wants to read the data card in the machine to see what going on with my sleep problems. The doctor says the DME is suppose to read it. The DME says the doctor is suppose to read it. The sleep clinic says the DME is suppose to read it. My insurance company has customer service agents who don't understand the problem, at all, and make it difficult for me to get past them to someone who does. (I don't have the software or know how to read it.) Meanwhile, I am not getting much sleep and I am feeling worse that before I started cpap therapy. I know that I could die if I stop using the machine and I just feel so bad about no sleep well and about being in this situation where none of the three I am having problems with care about my health enough to do more to help me. They have made their money off my sleep apnea and its just not practical for them to invest any more time in me, I guess. YET, they have control of my cpap machine/supplies. Is this what the forum participants mean when they refer to being on your own and having to take charge of your own therapy? This is such a mess! It seems that people either do well adjusting to cpap therapy (eventually), or, people have problems with it and have to work their problems out themselves, I guess. I don't know what I expect from you but any advice or encouragement is very, very much appreciated, right now. This is such a nightmare! I understand now how ex-pro football player Reggie White might have died (because he was not using his cpap machine). He probably had similar problems and frustrations and just decided to take his chances."
Views: 613
Replies to This Discussion
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Permalink Reply by sleepycarol on
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Susan she won't sleep with anything covering her. No sheets, covers, comforters, nothing but the clothes she is wearing. Has been like that since shortly after she was born. As a baby she would cry and scream until the blankets were removed.
I know it can be a problem getting them to transition to their own bed. I think it partly is the disposition of the child. I know Sky was only a month or so old when Kristy split from Sky's dad. Sky slept with Kristy after that up until Kristy and Caleb got together. Sky didn's have much of a problem transitioning to her own bed.
Sky has done some pretty weird stuff at night. At first Kristy just blew it off, but after the refrigerator incident she became fearful that Sky might hurt herself or get out of the house. They live on a major highway and if she should get out it would be very dangerous. So they put a lock way up near the top of the door of the alcove so that she can't wander at night.
Rock any ideas about the wanderings? Her peds doctor says he thinks she is ADHD. She doesn't nap during the day and gets by on average of 7 to 8 hours sleep a day. She is 3. She is not on any medication of any type.
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Permalink Reply by susan mccord on
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Carol, has Sky been evaluated by a child psychologist? Someone who is skilled and experienced at testing young children? Sure sounds like there might be some benefit in checking that out if her mom agrees. She does have some behaviors and sensitivities that aren't necessarily common in 3-year-olds.
Not my business to make recs to someone else about their child. But I'd be a little leery of allowing a pediatrician to diagnose what could be a complex disorder. In my opinion, and it's only MY opinion, her needs would be better served by being evaluated by a specialist. No reflection on Peds, they're wonderful. But some things need specialized training. Again, only my thoughts...and unasked for at that!
I'd join you in being very concerned for her safety, and even though I don't believe in kids sleeping with adults, I think I'd have THIS little one as close to me as possible when she was in my care.
Bless her heart.....she doesn't get much sleep either. Wonder if she might have a mild form of autism.....could be ADHD as well, OR it could be nothing!! Testing's the only way to find out, but it would be good to know before she starts school. Then you guys would have a leg up on helping her in the best way possible. She's a lucky baby to have you for a grandma! (Bet you'd say the reverse is true, wouldn't you? Uh-huh, I know.....
Susan :-)
sleepycarol said:Susan she won't sleep with anything covering her. No sheets, covers, comforters, nothing but the clothes she is wearing. Has been like that since shortly after she was born. As a baby she would cry and scream until the blankets were removed.
I know it can be a problem getting them to transition to their own bed. I think it partly is the disposition of the child. I know Sky was only a month or so old when Kristy split from Sky's dad. Sky slept with Kristy after that up until Kristy and Caleb got together. Sky didn's have much of a problem transitioning to her own bed.
Sky has done some pretty weird stuff at night. At first Kristy just blew it off, but after the refrigerator incident she became fearful that Sky might hurt herself or get out of the house. They live on a major highway and if she should get out it would be very dangerous. So they put a lock way up near the top of the door of the alcove so that she can't wander at night.
Rock any ideas about the wanderings? Her peds doctor says he thinks she is ADHD. She doesn't nap during the day and gets by on average of 7 to 8 hours sleep a day. She is 3. She is not on any medication of any type.
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Permalink Reply by RockRpsgt on
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But Mosenkis's main finding went beyond trying to determine easy causal links between sleeping arrangements and adult characteristics or experiences. Perhaps his most important finding was that the interpretation of "outcome" of cosleeping had to be understood within the context specific to each cultural milieu, and within the context of the nature of social relationships the child has with its family members! For the most part,s, therefore, it is probably true that neither social sleep (cosleeping) or solitary sleep as a child correlates with anything in any simple or direct way. Rather, sleeping arrangements can enhance or exacerbate the kind of relationships that characterize the child's daytime relationships and that, therefore, no one "function' can be associated with sleeping arrangements. Rather than assuming that sleeping arrangement produces a particular "type" person it is probably more accurate to think of sleeping arrangements as part of a larger system of affection and that it is altogether this larger system of attachment relationships, interacting with the child's own special characteristics that produces adult characteristics.
Sounds pretty inconclusive to me Mollette.
http://news.bbc.co.uk/2/hi/health/8245578.stm
"Couples should consider sleeping apart for the good of their health and relationship, say experts."
"One study found that, on average, couples suffered 50% more sleep disturbances if they shared a bed."
If a child sleeps with a parent then that child will develop the sleep habits of the parent. Also i would worry about the parent or adult in the situation becoming a psychological need for the child to sleep. A human wooby.
mollete said:Rock Hinkle said:Letting children sleep with you promotes bad habits for them.
Not necessarily.
http://www.nd.edu/~jmckenn1/lab/longterm.html
mollete
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Carol does anyone else in your family have a history of sleepwalking? Also has Sky been hospitalized for anything in which they might have had to cover her up when she did not want to be. When I was 3 I fell on a glass and cut my cheak open. At the hospital they kept trying to cover my face as they gave me stitches. To this day I do not like anything to cover my face.
susan mccord said:Carol, has Sky been evaluated by a child psychologist? Someone who is skilled and experienced at testing young children? Sure sounds like there might be some benefit in checking that out if her mom agrees. She does have some behaviors and sensitivities that aren't necessarily common in 3-year-olds.
Not my business to make recs to someone else about their child. But I'd be a little leery of allowing a pediatrician to diagnose what could be a complex disorder. In my opinion, and it's only MY opinion, her needs would be better served by being evaluated by a specialist. No reflection on Peds, they're wonderful. But some things need specialized training. Again, only my thoughts...and unasked for at that!
I'd join you in being very concerned for her safety, and even though I don't believe in kids sleeping with adults, I think I'd have THIS little one as close to me as possible when she was in my care.
Bless her heart.....she doesn't get much sleep either. Wonder if she might have a mild form of autism.....could be ADHD as well, OR it could be nothing!! Testing's the only way to find out, but it would be good to know before she starts school. Then you guys would have a leg up on helping her in the best way possible. She's a lucky baby to have you for a grandma! (Bet you'd say the reverse is true, wouldn't you? Uh-huh, I know.....
Susan :-)
sleepycarol said:Susan she won't sleep with anything covering her. No sheets, covers, comforters, nothing but the clothes she is wearing. Has been like that since shortly after she was born. As a baby she would cry and scream until the blankets were removed.
I know it can be a problem getting them to transition to their own bed. I think it partly is the disposition of the child. I know Sky was only a month or so old when Kristy split from Sky's dad. Sky slept with Kristy after that up until Kristy and Caleb got together. Sky didn's have much of a problem transitioning to her own bed.
Sky has done some pretty weird stuff at night. At first Kristy just blew it off, but after the refrigerator incident she became fearful that Sky might hurt herself or get out of the house. They live on a major highway and if she should get out it would be very dangerous. So they put a lock way up near the top of the door of the alcove so that she can't wander at night.
Rock any ideas about the wanderings? Her peds doctor says he thinks she is ADHD. She doesn't nap during the day and gets by on average of 7 to 8 hours sleep a day. She is 3. She is not on any medication of any type.
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I would suggest the same Susan, but a lack of insurance is the problem for them. Testing can be expensive (as I have learned when the school does an outside evaluation).
Our 3 peds doctors in town are foreign. They appear to know their stuff --- but there is definitely a cultural/language barrier when you use them. All three came from the same Middle East area. They have heavy accents that make it difficult to always understand them. So I am unsure when Kristy expresses her concerns if they take her seriously.
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I don't know Carol. With as common as ADD is I would hope that a pediatrician could be counted on for a Dx. Then again they should know about sleep as well. Nevermind.
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Rock to answer your questions -- my older son sleepwalks. He started as a child and he still does (he is now 33). I know after they had their baby, he got up one night went into the baby's room and came back out with a bundled up "baby" and was "feeding" it a bottle. Only trouble the "baby" in the blanket was another baby blanket rolled up. His wife said it was so funny watching him cooing at the "baby", loving it, feeding it, etc. Said he gently laid the bundle down and went back to bed. It wasn't until the next morning when he was told about his little escapade.
Okay when she was little she did have a bunch of tests ran on her due to her growing so slowly. She was finally diagnosed with something wrong with her liver. For a period of time they did routine tests keeping on eye out on her liver function and she seems to have outgrown whatever the problem was. Sorry I can't remember more details about it. She is still small for her age, she is almost four and can still wear a size 24 months clothes/2T and still has plenty of room in them. They have attributed her small size to the liver problem.
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What the hell are you babbling about Mollette?
mollete said:mollete said:Great! The card came!!
mollete
Although as much as I hate to admit it, I am totally baffled by the data produced by my cardbuster program.
mollete
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Are you ever going to except my friendship? I could really use some help studying for this test I have coming up.
mollete said:Rock Hinkle said:What the hell are you babbling about Mollette?
Well, in a subtle kind of way, trying to remind people that this thread isn't about their problems, but rather someone else's, but I guess subtle don't work around here. I suppose at this point, it's a lost cause anyway.
Apparently, that poster's comments about
Unappreciative Wretch said:I know that I could die if I stop using the machine and I just feel so bad about no sleep well and about being in this situation where none of the three I am having problems with care about my health enough to do more to help me.
was just a load of crap meant to incite and inflame. I'll bet that the real story is that this person is a PITFA, and those 3 entities are simply exasperated with trying to deal with this difficult person (frankly, whenever someone says "No one will help me!", what I hear is "No one will satisfy me no matter what kind of effort they put in!")
I find it nearly impossible that the claims of this poster could be true. Any/all of the entities would have every reason to get the D/L if for no other reason than to secure reimbursement.
As you have seen, the way to deal with a situation like this is simply to say, "OK MF, show me what you've got". Asking for the names/phone numbers would allow those entities to present their side of the story (even with the confines of HIPAA, the real story would reveal itself), and viewing 4-6 parameters of the D/L would show enough to verify the sleep story. This poster isn't/won't come back because they've been exposed and/or this whole thing has been fabricated.
And it's small "m", one "t" there, Mr. Hunkle.
mollete
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I will take that as a no.
mollete said:Rock Hinkle said:Are you ever going to except my friendship? I could really use some help studying for this test I have coming up.
I don't see where one has anything to do with the other.
mollete
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I see. Sounds reasonable. I am looking for some help with prep for the BRPT. I am looking for people to help quiz me if you are interested. I would really appreciate it.
mollete said:If you mean that "Friends" thing, then no. I think that whole concept is silly. It might be cute for the adolescents on "Facebook"(actually, I don't think it's cute. I think it stunts the ability to establish true personal relationships at best, and can be psychologically damaging at worst)("IMHO") but shouldn't be a tool in a forum for "grown-ups".
mollete
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Permalink Reply by Mary Z on
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mollete, the friend thing might be silly, but your profile is set to private and I am not able (should I need/want to ask you for your expertise) to contact you without being your "friend". I guess I could start a new discussion to talk to you; is the forum the place where you think we (any of us) should establish a true personal relationship? No disrespect or criticism intended. I am interested in establishing personal relationships on the forum and have done so by reading and responding to posts. I have come to respect the information and opinions from more than a handful of helpful people, some of whom I am now "friends" with. These friendships all started from messages in the forum, but have also included some personal advice by private mail. Please let me know what you think about how we establish these relationships and then foster them.
Mary Zimlich
mollete said:If you mean that "Friends" thing, then no. I think that whole concept is silly. It might be cute for the adolescents on "Facebook"(actually, I don't think it's cute. I think it stunts the ability to establish true personal relationships at best, and can be psychologically damaging at worst)("IMHO") but shouldn't be a tool in a forum for "grown-ups".
mollete
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