Hello,
I have a 19 month old son who has had some health issues since birth, and he was recently diagnosed with Mild Central Sleep Apnea.  Of course, trying to find info on CSA in a child that young is near impossible - and I'm a pretty good researcher.  And what I've read frankly scares me.  I'm definitely worried about him, and hope that some of you can give me some insight.  To do that, I will have to give you a history:

~While in the hospital, and only hours old, we determined he had reflux.  Since he was my 3rd reflux boy, we switched his formula right away to hypoallergenic.  He was on that until 12 months because of suspected Milk/Soy protein intolerance.  When we tried switching to milk-based before, it was bad.  He's been to the GI several times, and also determined he had Delayed Gastric Emptying (Gastroparesis), so instead of adding rice to his bottle, we had to thin it out for the DGE, or he would puke for HOURS.
~This may or may not mean anything, but he was also born with a rare birthmark, a Linear Epidermal Nevus.  It's fairly small as far as a nevus goes, but extends from the tip of his left thumb to just beyond his wrist.  Biopsy showed no connective tissue problems.  He also has a strawberry mark on the top of his head.
~He has had some gross developmental delays: he did not roll over at all until 7 months, sat up only at 8 1/2 months, and didn't begin attempting to walk until 15 months - and then only after physical therapy.
~He had a swallowing problem with textured foods (anything other than purees) and didn't begin eating those until 14 months, and then only after intense oral therapy.  He would gag and choke.
~He has had MORE than the normal share of infections, including multiple URIs, tonsillitis, strep, ear infections, pink-eye, sinus infections, hand-foot-mouth disease (coxsackie), thrush, bronchiolitis (which required a nebulizer), etc.  He's been on more rounds of antibiotics than I've EVER been
~At 10 months, his adenoids were removed as they were COMPLETELY blocking his airway.  At the same time, he had bilateral ear tubes put in due to frequent and resistent ear infections.  He is still a constant mouth breather.
~At this time - 19 months - he is still showing symptoms of severe GERD.  He is taking Prevacid and Carafate to control that along with Erythromycin for motility, Miralax for chronic constipation.  Oh, and ear drops for his ears, which are currently infected (even with the tubes he's had about 5 infections).

He has never been a great sleeper, but it seems he has recently become even worse.  It's hit or miss...but usually he is waking up at least 2 times a night, usually screaming.

Sleep study showed 7 central apneas in less than 7 hours of sleep, 1 hypopnea.  Lowest Oxy. saturation was 88%.  I don't have the full report so I don't know how long the episodes were.  We meet with the sleep expert on the 17th to discuss it with him.

Anybody have any thoughts / ideas here?  What questions should I specifically ask the dr?  Should we definitely get an MRI, just to rule out anything else?

Thanks so much for your help!
Kim

We can certainly relate. Isaac, our now almost 23 month old, has central apnea (mild to moderate). There is some good news for you if he does have reflux, in that reflux can actually cause central apnea as a defense mechanism. It can actually prevent your child from aspirating on the reflux. However, if he does NOT have reflux anymore (have them do a GER scan or even a  PH Probe, both are the gold standards), then you should insist on an MRI, especially because of his delayed  motor skills.

As for now, I'd highly recommend co-sleeping, if he'll let you.  You can also try and encourage him to sleep as vertical as possible. If he is still light enough for a swing or bouncy seat, then those are good options.

Keep us posted. You can also contact me privately if you like!

Tiffany

you don't think he has hemangioma's do you?

Are you asking me? I think he might have a Chiari malformation at his brainstem. It's just a hunch and I don't know much about hemangiomas, but my gut says get an MRI of the brainstem...

A central apnea in a child is only significant if it lasts for 20 seconds or more, OR if it is associated with a desaturation of 3% or greater or an arousal.  In re: the relationship to arousals, the central apnea has to cause the arousal.  If an arousal results in a central apnea and the apnea is <20 seconds, then that's nothing.

TiffanyAcuff wrote:

I think he might have a Chiari malformation at his brainstem. It's just a hunch and I don't know much about hemangiomas, but my gut says get an MRI of the brainstem...

Chiari would give you a heckuva lot more that 7 central apneas.

Ed

the hemangioma comment was re: the first poster.

Tiffany, are you saying you think YOUR child may have Chiari, or the first poster's child?  why do you think this?  has he had an mri?  My son has cerebellar malformation, including absense of the ccerebellar tonsils.  When the tonsils are present, and they are low and pressing into the spinal column that is Chairi malformation.  There are several types of Chairi tho'. ( Just interested since my son also has cerebellar malformation.)  An MRI is the only way to diagnose Chiari.

Ed:  Apnea is not always present w/Chiari, so I would assume it could be mild or severe.

embryopathy wrote:

Apnea is not always present w/Chiari, so I would assume it could be mild or severe.

Right, we seemed to have lost who goes to what.  My point was that 7 central apneas should not be the trigger to search for Chiari.  However, I agree that someone with Chiari can have varying degrees of central apnea depending on the degree of brainstem compression.

Ed

My son has had 2 MRIs, the first showed low lying cerebellar tonsils (but not a chiari malformation). The reason I suggested the MRI (and possible chiari) is because of the delayed gross motor skills that are classic of other neurological disorders that can also manifest themselves in mild to moderate central apnea.

Our pulmonologist and neurologist get concerned at any apnea event over 10 seconds if there is ANY drop in heart rate or oxygen saturations. Isaac had 26 central apnea events, the longest was 23.6 seconds with a significant drop in both. His mildest episode was 8 seconds, but was accompanied by a drop in heart rate and a slight decrease in his oxygen sats, therefore, it was counted as an episode.

If you do have an MRI, I highly encourage you to try and do it in a neurologist's office under a sedation and not general anesthesia. We have done it both ways. Once in a hospital with general anesthesia and separation of almost 2 1/2 hours. Our most recent on was in the doc's office under sedation. I got to stay with him the WHOLE time!! It was certainly less stressful and the risks are greatly reduced in doing it this way (at least according to the anesthesiologist we talked to)

I hope this is helpful to you. Because of the lack of research, it is very hard to know how many events is too many events and how long is really too long to not breathe. I'd say get a copy of the actual data and the summation. If you are concerned, I'd ask to see a neurologist (I'm kind of surprised he hasn't seen one already because of the motor delays.).

Thanks for having the great debate about my son!  It's more caring than I can get the doctors to have!   I've been saying, for almost 18 months, that SOMETHING is wrong with him, but I haven't been able get the doctors to really listen to me.  But, I feel like with the results of the sleep study (even if it's mild), they have to agree with my Mom's intuition here.

Anyway, to comment on all of your replies:
Tiffany - I have actually thought of Chiari malformation, and it's one of my concerns.  It's come up a few times in my research, and I can't shake it.  As far as his gross motor delay, they had always kind of attributed it to the reflux.  He didn't want to lie on his belly, because the reflux was hurting and therefore had no motivation to roll over onto his belly.  Then, once he was behind on that...it kind of delayed all of it.  We realized how intelligent he was, though, as he was going through PT.  You would show him something once and he picked it up quickly.
Also, he is scheduled for the PH probe at the end of the month, and I think, since he will already be sedated, that I am going to schedule an MRI for the same day.  I am definitely going to insist, if nothing else than to give me peace of mind.  And thank you for the suggestion of sedation vs. anesthesia.  I would not have thought of that.

embryopathy - I'm not sure I understand your question about hemangioma.  He has one on his head, as I mentioned.  Are you thinking an internal one?  Maybe your idea of hemangioma is different from mine?

Also, I think the definition of an apnea event for children is much tighter than for adults.  I don't believe it needs to be 20 seconds to be considered an apnea.  But, I am going to confirm that with the specialist.

Thanks for your help.  I have been going back and forth trying to decide if I should be freaking out or not, but I sincerely believe there is something to be concerned about, and I just want to find out what it is so we can (hopefully) fix it!

Thanks again,
Kim

Hi Kim,
re; your original questions...........I don't know the standards for children, esp. veryyoung children.  My son is 24 (developmentally he is 3-4 yr level) and just had a study revealing 5 apneas in 5 hours and they said he has "no significant apnea".  He also had a hypopnea and oxygen went to 89 but for less than 1 minute so that is not a concern either.  I believe it matters how often and how long the desats occur and the same with the apnea.  The summary report they give us doesn't offer any of that do they.  and my sleep lab doesn't even schedule appts w/the specialist.  I had to beg for a phone call and am waiting.  So, I know the standards are different for little ones, but just thot I'd let you know that my son's results were very similar and did not bring much concern from the docs.  I think as parents we always need to follow up with our questions though.  I know exactly what you mean about doctors not listening.  I've actually been going thru that for 7 yrs w/my son....still going thru it.  I'm certain he has central apnea that has worsend the last few years (from 13 secs to 62) but it diden't show up the night of the study.  I have always said it is sporadic, only happens on certain nights.

Glad to hear your son is doing well with therapy.  Maybe he is just delayed secondary to health reasons.  It definitely happens.  Also for a comparison, my son didn't roll over until 2 yr of age and didn't sit until 6 yrs.

WELL I would talk to the doctor to see the purpose of using cpap for central apnea. A regular cpap does not breath for you when you forget it just keeps your airway open. A bipap with a back up rate breaths for you when you forget. Just a few questions you may want to get answered.