Hi my name is Ashley.  My daughter, Emily just turned 1 and was diagnosed with Centralized Sleep Apnea at 2 weeks old.  She has a problem with GERD, ear infections, and was born with a rare heart defect called Truncus Arteriosus.  Her heart defect was repaired at 2 weeks old through Open Heart Surgery.  She will have to have a conduit replacement probably by the time she is 8 years old.  
She is still sleeping on a smart monitor system and we visit the pulmonary doc monthly.  I found this board because I have had no satisfaction with my pulmonary doctor.  He is a wonderful person, but so far, hasnt been able to give me any answers.  Right now he just has her on caffeine and wants to try Phenylbarbitol (*yikes*) next.  He refuses to tell me for certain if she is having seizures???
I am going to Duke Hospital next month to get a second opinion (we now live in Greenville NC-there is a GREAT children's hospital here).   We are also visiting the neurologist this month.  My husband bugged the pediatrician until they gave us a referral! *go husband*

I look forward to sharing with you all and am thankful I found this board.  I really need all of the input I can get!

Ashley F.
-mom to Emily Grace, Truncus Arteriosus, VSD, CSA, & GERD...mommy's miracle!

Wow! You certainly have a lot on your plate. I needed to hear your story, though. It is important to realize, that while my son has seemingly nothing wrong with him, except the central apnea that no one can explain, having more diagnoses or problems or information don't necessarily make it any easier for the docs to fix or for the parent's to spur the docs to investigate a little further.

We have had to take a mini-break of temp taking, but will start again on Wed. night, since he has been battling a minor bacterial infection.

I tell every mom and dad here to remember one thing: You are the parent and no one (aside from God) know your child better than you do. If you think it is important, then it is. Also, if you are having a hard time getting  a doc to listen to you, bring in the daddy. Oftentimes they look at moms and say "oh, you are just a paranoid mommy, everything will work out". But if daddy comes in and says "this is worrying to me", then the docs get right on it!!

We'll have to keep in touch, especially since we might be moving to NC soon!!

Tiffany

Thanks Tiffany!

I look forward to talking with you.  I am having a hard time finding research on sleep apnea.  I had to postpone my temp taking too because Emily mysteriously broke out in a rash all over her body this morning.  The doc thinks she may be allergice to the 12 month vaccinations she just received or either it's something she has eaten or come in contact with.  Anyway, I look forward to working with you on trying to get some answers.

Ashley

-Where in NC are you thinking of moving?

The short answer: Davidson. My husband may be working for the city.

Hi Ashley,
I too have a son who is on the smart monitor, has been since 6 months of age. He is now 2.
My son stopped breathing in my arms at 6 months of age, CPR was giving and we spent the weekend in hospital came home with the apnea monitor.  At first the supspected it could be seizure related, he was put on Tegretol medicince and was on that a year. Even though his EEG showed no seizure activity. He was weined off the medicine last August. We had a MRI done in Novemember which showed not Chairi Malformantion. We also now know that his oxygen levels drop with his apnea's.
They really is so little information out there on central apnea in infants and toddlers.
I am curious how often does the smart monitor go off for an apnea ? do you have to intervene or is the beep loud enough to wear it startles your daughter and she starts to breath again ?
We keep getting told that he will outgrow this...but we are still waiting.
I agree that we do know I children the best.  
Sarah

Hi Sarah,

Like your son, Emily stopped breathing while nursing at 2 weeks old (yikes).  The doctors think she got choked (she also has reflux).  We also had to call EMS and stimulate her, which was very scary!  Emily's apnea monitor is set to alarm at 20 seconds of no breathing, and it goes off maybe 3-4 times a week.  However, she does have some different types of apnea that do not alarm (according to pulmonary doc), which sounds weird to me.  I know her o2 sats are constantly unstable.  Usually her monitor is loud enough to startle her, but i still go in her room and stimulate her.  My husband and I just moved her into her own room a couple of months ago because of her apnea.  Our parents kept telling us we should move her...but we didn't until we felt comfortable.  Now her smart monitor sits in the hallway outside of our door.  (her room is right across the hall)  How was the sedation when your son went?  Were they able to supply him with oxygen during the mri.  Emily does not sleep with oxygen now, but I am so scared she is going to have an episode in the machine.  I have news for them...I will be jumping inside of the machine and I am not leaving her the entire time.  If there is a problem, we will go elsewhere lol.


_________________
Ashley F.

-Proud Mommy to Emily Grace CSA, Truncus Arteriosus, Ventral Septal Defect, and GERD.
God's Gift to us!

-Proud Wife to Disabled Veteran Corporal F. United States Marine Corps

I want to encourage you about the MRI and sedation. I would highly recommend having sedation instead of general anesthesia. Secondly, do not leave them for even a minute. As for the episodes, the episodes themselves are not worse, but it is just more difficult to arouse them enough to breathe without disrupting the test (which means starting again and more anesthesia). That is where the risk lies. Before tests like this, I watch Isaac sleep for several hours of the course of a few days so that I can see his facial changes that signal an episode (right now it is his lips turn gray then blue then purple then white). That way, I don't have to rely on anyone's machine to tell me if my baby (ok. almost 2 year old) is or is not breathing.  I brought a diaper pin with me to poke his foot with in case my usual foot massage wouldn't work. I used it once (ran it up and down his foot with some pressure, then poked his toe) when he was not breathing (his lips had turned blue).

Do not be afraid, know that the benefits of the information will far outweigh the risks.

From one who has been there more than a few times now...Tiff

Ashlee,
It sounds like our kiddies have a lot in common. My son's alarm is also set at 20 seconds. Will record after 15 seconds. I feel like when the alarm sounds it will arouse my son and he will then take a breath. Only once and this was the first time was CPR needed. I feel like the monitor is a lifesafer for us though. We have recently began using the PS2 monitor which records the oxygen levels. We know that his oxygen levels drop with his apnea and then will bounce back up. His low's are normally low 80's but there has been a 74 in there once.  
We had a cardiologist appointment this week to see if they could answer the low sat's question but they couldnt. The innocent heart mumor which was diagnosed when he was a year old (and was told that we didnt need to go back again) has now turned into a pin hole size hole in the heart. This should fix itself over time. He also has a leaky valve which they will keep an eye on at an annual check up.

As for the MRI, well we were told that my son would be sedated. I sat in the room with him, he didnt have his monitor on but they assured me that they would watch his breathing, I also could see his chest moving up and down. They sedated him twice, after the first time they tried to sedate him, he started to wake half way through the MRI. They tried it again, but they said that neck wasnt being still. They told me that this sometimes happens with children who have central and obstructive apnea.  They then had to incubate him, which was horrible for me to watch but the little guy wasnt aware off what was going on. I was not happy with this, but we had to get the MRI done to see what was going on. I was very surprised at how quickly he recovered from his sedation. We were able to come home the same morning.
My sons alarm varies. we can have a good couple of nights but then have two in a night. We have been told that he will outgrow it. But Jan and Feb were his worst months so far (excluding his first episode where CPR was perfomed). But in Feb we had 20 plus episodes and 30 episodes between 15 and 20 seconds.
We have our monthly appointment in a couple off weeks, so we will reavulate then.
Sarah

Tiffany - do you actually go to sleep at night ? if my son was turning blue, I think I would be paying for the monitor just so that you can get some rest. It is very reasuring to have the monitor.

Isaac's episodes are rarely more than 20-25 seconds and will have gray lips and pink cheeks and breathe spontaneously. I do sleep at night, better than with the alarm when I was always afraid I would sleep through it. He has never had to have CPR and rarely needs physical stimulation, although we watch him like a hawk after sedations...

Tiffany

Thanks again guys.  I really appreciate all of the help and will keep you updated.  

ashley


_________________
Ashley F.

-Proud Mommy to Emily Grace CSA, Truncus Arteriosus, Ventral Septal Defect, and GERD.
God's Gift to us!

-Proud Wife to Disabled Veteran Corporal F. United States Marine Corps