mom of a 3 month old with moderate sleep apnea and VSD

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mom of a 3 month old with moderate sleep apnea and VSD

Postby AGRSMOMMY » Sat Feb 19, 2011 10:07 pm

I'm just really trying to learn as much as possible about sleep apnea. I got my daughters test results from her sleep study 2 days ago. I was told that she has moderate sleep apnea. But because of her VSD and the apnea something isn't right. I am waiting on the wonderful insurance company to approve the referal for her to see a pulmonary specialist and to have another ECHO done. My question is how common is it for a baby with VSD to have sleep apnea? My daughter was born full term with no birth complications. I had gestational diabetes but that was the only "complication" during my pregnancy. Any and all help is muich appreciated. Thank you.
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Postby Janknitz » Sat Feb 19, 2011 10:27 pm

ÅGRSMommy, you might want to post this in the pediatric forum, because this one is for adults with sleep apnea, and the people on the pediatric forum will know a lot more than we do.

Click Sleep Apnea Support Forum Index above this space, and that will take you to the list of forums. Then go to the pediatric forum.

Good luck--I hope you find out the information you are seeking.
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Postby AGRSMOMMY » Sat Feb 19, 2011 11:22 pm

Thank you Janknitz
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Postby Janknitz » Fri Feb 25, 2011 2:17 am

I'm sorry you didn't get any replies here--it may mean that VSD and sleep apnea are not common together.

How's your little one doing? Did you finally get the next echo?

Has your baby been seen by a geneticist by any chance? I have a genetic syndrome that often causes heart defects including VSD's and there are also some facial "dysmorphisms" that contribute to sleep apnea. I'm not saying that's likely with your child, but just curious if the doctors have brought it up. Lots of VSD's occur without this genetic disorder.
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Postby TiffanyAcuff » Fri Feb 25, 2011 10:45 am

I haven't replied yet because I don't know much about VSD's and their coincidence with apnea. I need to do some research and get back with you. My life is a total zoo right now, but I should have some time tonight and over the weekend to see if I can find some answers for you!

Hugs...Sorry I haven't had time to do the research sooner...

Tiffany
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Postby AGRSMOMMY » Fri Feb 25, 2011 12:52 pm

Thank you all. We got an apnea monitor on Tues. and it has only gone off a handful of times. Which is good. Audree (my baby) has met with a neurologist and he ordered a EEG and A BAER test along with running blood work to check for a metobolic issue. The doctor is confident that she will have unexplained apnea and she will out grow it. He also did not hear a heart murmur. Audree also will be going to the pulmonolgist (spelling?) in the next week. My big question right now is what is the likely hood of getting a false positive for moderate sleep apnea? Also do either of you know if there are other things that help with the diagnosis of apnea? Like O2 and CO2 intake and out take or anything like that? I'm trying to understand all this. Thank you so much for all your help.
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Postby Janknitz » Fri Feb 25, 2011 3:24 pm

This is where the pedi moms can help a lot more than me. With adults it's fairly easy to do a multi-channel test at home or in the lab, but I have no idea for infants :-?
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Postby TiffanyAcuff » Sun Feb 27, 2011 2:21 am

Finally questions I know some answers to!

First, you've done well to see a neurologist and a pulmonologist. However, are either of them sleep specialists?

If you go to a really good sleep lab, you'll usually get good data to at least have an idea of what is going on...

You could ask them to monitor something called End Tidal CO2, which is often abbreviated ETCO2.

I hate to burst the "she'll outgrow it" bubble, but we've heard that line for almost 5 years now, and finally have a doctor that admitted that our son will likely carry the same diagnosis to his grave that was assigned to him at a mere 5 months old. That is: Unresolved Primary Central Sleep Apnea of Infancy. Now, some kids do outgrow it, but you can't get complacent with it, because as soon as you do they regress and things get really rough again...

Keep us posted..I'm still working on some information about VSDs and apnea links!

Tiffany
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Postby AGRSMOMMY » Wed Mar 02, 2011 12:12 am

Ok well my daughter had her 4 month check up today. She is meeting all her milestones and is thriving. I got some more info on why her moderate apnea is puzzling the doctors. Her oxygen levels were dropping without an event during her sleep. They will be running TONS of tests in the next few weeks to rule out things and possibly find a cause for all of this. I have read that alot of parents after a couple of weeks or so get really tired of the apnea monitor go off with false alarms because the electrodes are miss placed or the baby moves and it lifts up. But personally it is a GOD send to me. I rather wake up 12 times with false events than not wake up because I didn't know she was having a problem.

Tiffany to answer your questions- both doctors deal with sleep apnea. So crossing my fingers they know what they are doing. I trust the neuro doc. He is the same doc that has been treating my son for 3 years for other problems.
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