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May 01, 2009
mommato3
Lorenzos mommy-sleep study questions
I posted that thread without a question. Sorry! Holden's sleep study results came back and pulmo briefly mentioned them when I was talking to him about holdens bronchoscopy which I was more concerned about so I forgot to ask these questions. He said Holden did have several episodes of partial and full apnea but that his O2 stats didn't really dip during them. I guess I thought that was what apnea was. So how can he have apnea without O2 stats falling. Does it have to do with his carbon dioxide levels or respiratory rate or something which they measured too along with a billion other things. I've never seen so many wires. I assumed that was good news about his O2 stats. Just wanted to know more about what that meant and if you think I should get an apnea monitor. It was not timed with his probe b/c I think they originally thought he might have apnea from his pierre robin characteristics (tongue, etc) but during the bronch the pulmo flipped Holden upside down, everywhich away to see if he had obstruction of his tongue in his airway and he didn't. So we assume the apnea spells are from reflux since his probe showed 202 times. I may not should worry about the apnea since his O2 stats didn't drop. I just don't know much about it. Thanks for any info. How is Lorenzo's apnea now?
May 01, 2009
mom2adriane&morgan
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
I'm not Lorenzos mommy but we have dealt with apnea for almost two years now. Adriane had several apnea episodes at night. She wouldn't drop in O2 but the doc still gave us a monitor so if she had a really bad night it was just peace of mind. KWIM? There were times when the alarm would go off 20 or more times a night and there were others when it wouldn't go off at all. The monitor is set to not go off unless they stop breathing for 20 secs or more. I felt like that monitor saved her life last year. There was at least once that she stopped breathing and I had to perform CPR. I'm not saying that that will ever happen to you but I think any amount of apnea warrants a monitor. We always found that Adriane's apnea got 100 times worse when she was sick so if nothing else it was good in that respect for us.

Adriane had a mix of central and obstructive apnea. It was neurological as well as reflux related so it is different from what you are dealing with. I hope some of this info helps you make a decision on the monitor.

Sorry for butting in on your thread but I felt I had to share. -Amanda

May 01, 2009
mommato3
Thank you! You are not butting in on this thread and anyone else that has dealt with these please share. I just remembered Lorenzo's mom. Thanks! Should I call and ask the pulmo doctor or our pediatrician for a monitor? Will insurance pay for it? What did you do when the monitor went off? I mean, how did you know if you should go in there, perform CPR, etc? Why would they not drop in O2? I guess that was just one night see (the sleep study) so he could be doing it more than that. Does the monitor say how long they haven't been breathing or would you just go in there and check and see everytime and if not perform CPR? This is all new to me. The pulmo didn't sound too concerned but I guess that is b/c of the O2 stats. How can they stop breathing and not desat in O2? I guess that is what I didn't understand b/c I thought that was what apnea was. Thanks again!
May 01, 2009
mom2adriane&morgan
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
I honestly don't have the answers on the o2 stats. Adriane would drop in o2 sometimes and others wouldn't. Perhaps it depends how long the episode was and what was causing it on whether she would drop. We went through our ped and they called the med supply company and set things up. Our insurance that we had intially paid for everything. When we had to switch they didn't pay for all of it but it was close. The doc thinks that she still needs it but she refuses to wear it and will take it off to make us come back in there to see her after put her to bed so we turned it in. when she is having a bad night we just keep her in our room.

They will give your their instructions on the machine but ours was like this. If she had an episode that was 20 seconds it would beep. When it stopped beeping she was breathing again. Every beep was a second. So, when it beeped we had a log. We wrote down the time, how many beeps and what it took to get her to breath again. Sometimes the beep would be enough to startle her back into breathing. Sometimes us opening the the door or turning on the light would do it. Others it would take me picking her up and shaking. You get the idea. There are levels of stimulation. If you have to go through steps and then if they are still aren't responding then you do CPR, call 911. At least that was our experience. You could be right that he might see some stat changes if you did a study over several different nights but they don't do that. I know we have experienced that even when she was in the hospital for other things that shouldn't be dropping her stats that they noticed it. The doc commented on how her stats were dropping and that it was new. I told him that it wasn't new just that they had never caught it before. She was always a blue baby, still is. I hope you can get something to help you fell better about all this. Maybe someone else has different experiences.

May 01, 2009
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Hi -- I'm glad you got the results back. Apnea is actually defined as the cessation of breathing, regardless of whether or not oxygen saturation drops or the appearance of any other reaction to the lack of breathing. While you may hear it said that sleep apnea is defined as failure to breath for 20 seconds or more, that is technically not true. An apnea episode can last just a few seconds, but the 20 second rule is used for the purpose of observed apnea, rather than monitored apneas -- in other words, it is generally considered too difficult to confirm apnea, as opposed to a natural pause in breathing, during visual observation if the event last less than about 20 seconds. Realistically and practically speaking, however, a person can have many episodes that last very short periods of time and still be diagnosed with sleep apnea.

With regard to O2 levels, it is good news that Holden's saturation remained normal (did you get the actual numbers?). What that usually means, as I understand it, is that his heart is able to keep oxygen moving through the blood stream in spite of periods during which no fresh oxygen is taken in. One of the concerning things about ALL apneas is that, when we don't breath, our heart has to work extra hard to keep our blood oxygenated. If the heart has to work extra hard on a frequent and long term basis, this can lead to what is called an enlarged heart -- since the heart is a muscle, if it works really, really hard, it will grow -- and ultimately the heart can wear out and stop functioning properly. So no matter what kind of apnea, and no matter how mild or severe, anyone who has been diagnosed with sleep apnea should have regular heart check-ups, preferably with a cardiologist.

Did you get a copy of the sleep study? I highly recommend asking for one, if you did not, and going to www.sleepapnea.org, where there is a forum which includes a place to ask questions about the details of sleep studies. I slogged through endless hours of trying to find information online when we got Lorenzo's results, and I wish I would have known to just go there and share his results. In addition to the apnea itself, most sleep studies reveal a tremendous amount of fascinating information about a person's sleep in general, and it is well worth understanding as much of it as possible.

As for apnea monitors, we do not have Lorenzo on a monitor, but frankly, if I had it to do over again, I would have gotten one. We co-sleep, and because his apnea was totally obstructive, there is effort to breath, and if it goes on for awhile, distress, which wakes up both up -- but still, it would have given me a lot of peace of mind I think to have a monitor. You can get monitors without a prescription, online (there are several varieties) as well as o2 monitors. They can be spendy, but again, probably worth it for the peace of mind if you find yourself awake when he's sleeping, worrying about him.

We have been through hell over the past two years trying to get Lorenzo diagnosed, and then trying to get anyone to care. It has been very discouraging how little concern any of his physicians have shown. He compensates for his lack of good sleep well, but his immune system is a mess and he has some behavioral things going on that I feel certain are related to the apnea. We will be having another sleep study soon, I believe, to see where things are at. I hope you have a smoother path to getting Holden the help he needs. The main thing is, don't let anyone minimize the sleep apnea diagnosis. That happens sometimes when the o2 sats stay up, but apnea it not something to play around with, and it should always be taken seriously -- especially if there is no certainty about what is causing it. Please fee free to email me directly at cristina@mothersupportnetwork.com if you like. Best wishes to both you and Holden!

Check with your
doctor first!