January 25, 2014 at 11:29 pm #653
Just wondering if anyone else ever had high carbon dioxide during a sleep study without obstructive apnea? Any sufferers from central sleep apnea who also have EDS?
They did take a look at her tonsils by snaking a camera through her nose, and said they hang down too far, so they will be removed on Feb. 4th. But they are not sure if this will solve the carbon dioxide problem or not, so I thought I’d put this out there.
Her pulmonary doctor said the results were surprising because it is what you would see in someone with lung disease, which thankfully she doesn’t have. She is an asthmatic, but was not having any issues during the study.
Our pulmonary doctor is great because she was the one who finally started listening to us about all of Jaynie’s odd symptoms and started referring us on to other specialists. I really like what she said to my daughter at her appt. last Thursday. I think some of you will appreciate this!
Jaynie to Dr.: “My mom says not to worry because I just have a missing puzzle piece to my medical stuff and we will find it. But I think I’m the puzzle piece and I don’t fit into any puzzle at all.”
Dr.: ” No Jaynie, you are a beautiful puzzle piece and because of that, a part of a difficult puzzle, but not an impossible one. We will figure it out.”January 26, 2014 at 11:00 am #4805BarbaraParticipant
Aw that’s lovely, if only OUR doctors were as compassionate!!January 28, 2014 at 3:34 pm #4812
Yes! My 8 yr olds sleep study shown aveolar hypoventilation as well. She has bradycardia as well as many other lung problems. But her cardio was surprised by this as well, but pulm said it didnt surprise him…i love the puzzle analogy!!!January 28, 2014 at 4:53 pm #4813
I just don’t want to subject her to a surgery that won’t fix the problem! So hard to figure out the puzzles our kids are! My child does not have lung issues, other than asthma. She had PVCs on her study though. Also, they called Jaynie’s hypoventilation, non apneic. I’ve seen the aveolar kind in my research, but they haven’t really called Jaynie’s anything.January 28, 2014 at 5:08 pm #4814
I hear ya! Our pulm and cardio did not want her having any surgerys right now. Her adnoids, tonsils, and uvula are all large…but a nasal spray everyday is helping enough for now. Shes on meds for reflux and adtrovent to hopfully help with the tracheomalacia plus pro-air, albuteral, and a ocapella device. Ist helping some. So i hope the next sleep study is better…just the low heart rate:) 38-45 at night:( scares me to put her to bed! I check on her all night! 55-60 is her resting hr. During day.we also put a ionizer in her room…its the freshest room in the house! Better be for the price! And sleeping on a incline. Did yours say anything about varying qrs?January 28, 2014 at 6:27 pm #4815
No, nothing like that, that I’m aware. I don’t even know what that means! I haven’t spoken to a sleep doctor. Our pulm. doctor ordered the study. From there we were referred to upper airway and cardiology. I wish I knew what ‘non-apneic hypoventilation really meant! And why….the why would be most helpful!January 28, 2014 at 8:14 pm #4818
I think it means not caused by not taking a breath over a certain amount of seconds. Like sleep apnea.January 28, 2014 at 8:27 pm #4819
The why…could be blood flow, shallow breathing,low respiratory rate, some types of autonomic dysfuction caused from central nervous system ect. A build up of paco2 is the lungs not pushing the amount needed out. If o2 is normal, the body is properly oxygenated but is not properly ventilating out the toxic carbon out, which can lead to acidosis. Going to a card and pulm, neuro, or electrophysiologist would be your best bet. Im guessing a ent is just gonna wanna do surgery…What were her oxygen levels? Doctors on here feel free to add or correct me if i misspoke! Im just a mom who studies a lot!!!January 28, 2014 at 10:37 pm #4820
Thanks for your replies!
The cardiologist said she has autonomic dysfunction. I have asked the question to him, the ENT and a different pulmonary doctor, associated with the upper airway, if the true problem is exactly that, but they have all said they haven’t heard the breathing being affected. Hence my frustration, because to me, it seems it could be related. I have been trying to read up on all the causes of the hypoventilation. Here are the sleep study results in question:
The average heart rate was 71 BPM during REM and NREM sleep. Frequent premature ventricular contractions were noted. There were no obstructive or mixed apneas. There were 2 central apneas with an average duration of 11 seconds with the longest being 12.7 seconds. The average oxygen desaturation in association with the central apneas was 91.9% with the lowest being 91.9%. There were 4 obstructive hypopneas with an average duration of 11.8 seconds with the longest being 13.2 seconds. The average oxygen desaturation in association with the obsturctive hypopneas was 90.8% with the lowest being 88.7%. The apnea-hypopnea index was 1.1. The obstructive index was 0.7. The average oxygen saturation was 96.8% during REM and NREM sleep. The average end tidal CO2 was 50.4 in sleep, 46 in Wake, with a maximum end tidal CO2 of 61.8 There was 99.6% of the study time spent with an end tidal CO2 higher than 45 and 92.7% was spent with an end tidal CO2 higher than 50.
Don’t know if seeing them will help answer the question.January 28, 2014 at 11:55 pm #4821
My guess would be the central sleep apnea even though it was only 2 would be a good indicator of cns/dysautonomic. That with the pv. Hypoventilation can also be lower airways due to asthma and lung diseases. Have you looked at congenital central hypoventilation syndrome? This was my d’s cardiologists suggestion to her pulm. He did not think this was the case…more to do with her trach and lung disease. Im not sure which one is right!!! I hate that they all work separately and just kkwwooo they are in the right! Electrolyte imbalance can effect both our girls sleep disorders. Thats what i have been studying lately. We go for her results tomrw. Ill let ya know!January 29, 2014 at 5:33 pm #4824
Results from a repeat sleep study? Yes, please keep me posted and good luck! Hope it helps you figure some stuff out and again, thanks for taking time to reply here. I will keep researching, asking more questions and maybe even get another opinion. I did tell our regular pulm’s nurse today, that somebody there needs to take lead on her. She has been to an immunologist, pulm, cardiologist, upper airway which included the ENT and a different pulm., and is going to see a geneticist, all of which have thrown in their two cents and ordered tests. Who is the puzzle master?!?!?!
Again, best wishes for tomorrow!January 29, 2014 at 6:32 pm #4826
Unfortunately i think we are:( i really thought her geneticists would give us the whole picture…which i guess eds is…cuz you cant really rule anything in or out due to connective tissue (collagen) is just about EVERYWHERE. Her test came back homozygous MTHFR A1298C and insufficient IgA 27 (rr 44-244mg/dl) but her food allergy test was pretty much none or very low…guess i have something to do tonight after-all. Research the puzzle!January 29, 2014 at 10:09 pm #4830
Oy. Good luck. Keep me posted.February 10, 2014 at 7:56 am #4859
Jaynie did not have the surgery because she got sick. But, the good news is, my persistence has paid off and instead of waiting until June to see the geneticist, we are now going this Wednesday. I will feel so much better about proceeding with surgery after I have his opinion on this matter. One small victory.
Many have judged that I have put way too much thought into a ‘common’ tonsillectomy. But I argue a surgery is a surgery, with potential life changing effects, plus while it may be a ‘common’ surgery, my child is anything but!February 10, 2014 at 12:12 pm #4860
That is great! Never apologize for following your gut, to ANYONE! Keep pushing till they have done their job, to the quality/standard of a mother’s instinct. You will know when this happens.
By chance have they tried flovent/flonase to shrink things a little before they just went straight to, lets do surgery?
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