Please help a very scared mommy!

[Anonymous]

My introduction post has all the details… but here is short version.

At 13 days my son quit breathing long enough to begin to turn “dusky” in his face. This was almost 2 weeks ago. We were in the hospital for 5 days. They ran TONS of tests and all they found was severe reflux/ GERD. He had 6 apnea episodes in the hospital. We were sent home last Sunday on an apnea monitor. We went 9 days without an apnea episode. Well, night before last he had and episode, another yesteray, and now one this morning. My question is this… all of the episodes aside from the one this morning happened shortly after he ate. The one this morning was 3 hours after he ate. Can that still be attributed to the GERD? Can anyone else who has dealt with apnea PLEASE share your experiences with me. My baby will be 4 weeks old on Thursday. He is on Prevacid and Reglan. I know I am probably in for a long struggle, but these episodes have me scared to death. He seems to me and everyone else to be healthy otherwise… Please help…

[Anonymous]

Hang in there. Apnea can be very scary! The one three hours after he ate, was that asleep, or awake? Was he upright, or lying down?

He is getting bigger every day and these should become less and less. If he is having them repeatedly, then I would call the doctor and give them the information. Sometimes we had false apnea readings when the leads were loose or needed to be changed. Always look at the baby for color, etc as that will give you a good indicator. Look around the mouth especailly for color changes, etc. The baby should be nice and pink.

Let me know about the above questions and then I might be able to help more.

Hang in there. you are doing a great job!!!

Ann Marie

[Anonymous]

The one three hours after he ate he was upright and sleeping. We have had plenty of false alarms with the monitor, so I know the ones in the last few days have been real because he gets “dusky” around his mouth. Once he is stimulated and breathing again he pinks back up. The thing is he seems to be semi-aware during his episodes, like he is struggling to get air. He has had two episodes where he is turning dusky but the apnea monitor doesn’t go off because he is making the breathing motion with his chest, he just can’t get air.

This is seriously killing me… all the help you can give me is so appreciated.

Thanks again,
Alana

[Anonymous]

Hang in there, Alana. I would tell you that healthy full term babies as well as us as adults can have apnea while in really deep sleep. You just don’t know it because we are all not on monitors all the time, but it is still really scary! The monitors are so loud and it really just can shake you to your core when you hear it go off.

You are doing so great! Hopefully the episodes will become less and less and you will be off the monitor soon. Was your baby preemie at all?

I know I am not much help, but you really do sound like you know what you are doing. Does he have a sat probe, or are you monitoring respirations and heartbeat?

[Anonymous]

He was 4 weeks premature. His monitor is not for saturation, just heartrate and respirations. Did your child/ children have apnea? Would you be concerned that he went nine days without an episode and has had one or two a day for the past couple of days?

[Anonymous]

Hi Alana, so he is just getting to his due date? Both of my boys had apnea, but mostly apnea due to prematurity. Carter had apnea at other points and was on a monitor, but for other issues, not the GERD.

I would not be concerned. I would monitor it for my own sanity, and write down every episode that you are seeing and then call the Doctor at the end of the week if he has more. Just keep them in the loop and then let them make the decision where to go.

I did find it common with both boys at the beginning that they would go a long time without episodes and then have a couple of random ones. It did make me very uncomfortable, but this can be common. I would check a couple of things if you are nervous:

1. Is his intake of food decreasing, or it is somewhat normal?

2. Does he have a temperature, or low temperature?

If these things are normal, could be just a matter of his tummy was overfull, or just one of those things, but if either of the two things above are a concern, than could be a simple cold or an infection, and would warrent a visit to your doctor.

It really is a hard thing you are going through, but you really are doing very well.

Others on the site have had children with apnea that will chime in soon I’m sure as well. They may have better suggestions….

Hang in there and ask away.

You have found a wonderful group of moms here that are great!

[hellbennt]

ann marie wrote some great encouraging suggestions/comments!

I posted to your other post, but will put it here, too, to get others’ opinions-

anyone: would a ph probe help? just thinking ‘out loud’

also I wanted to know about the medication(s)- if it’s a ‘good’ dose of prevacid and given on an empty stomach then followed by a meal 30 min later…

medication will not stop the reflux, so I’m not sure it would stop the apnea-in Jonah’s case I *think* the medication helped stop the apnea, but I really don’t know. he was full term and had apnea episodes at birth, in the nursery right after delivery, so he wasn’t refluxing ‘food’…

we had a lot of false alarms but he did turn dusky a few times

it is SO SCARY!!!

hang in there as best as you can!

maybe try ‘shifts’ w/ your dh if possible so you can get some rest…it’s so hard! you’re doing a great job!

[Anonymous]

I guess I am just feeling so horrible and hopeless today because he had gone nine days with out an episode. And he does’t scream and cry like I would expect someone in pain to do. He does cry some but can be comforted. He eats well… He just makes these faces that tell me he is in pain and he gags like his throat hurts.

The doctor ordered a CT scan to completely rule out neurological issues even though he had a normal EEG, so that has me terrified…

I am feeling like I am at the end of my rope, and yet I know I am probably gonna need a lot more rope!

Laura, did Jonah cry a lot at first like some would expect reflux babies to do? When did he outgrow the apnea?

[hellbennt]

he outgrew the apnea by I’d say 3 months old…he DID shriek and howl- so much so that he went hoarse when he switched from zantac to prilosec (no one told me to keep him on the zantac!)

the neurological effects are called Sandifer Syndrome Symptoms- it’s totally normal in a baby w/ GERD- they have neurological things they do that is pain related- it’s the body’s response to pain

these links should help:

from: https://www.infantreflux.org/Forum/forum_posts.asp?TID=627&PN=1

sandifer threads:https://www.infantreflux.org/Forum/forum_posts.asp?TID=195&KW=sandifer

https://www.infantreflux.org/Forum/forum_posts.asp?TID=417&KW=sandifer

it’s symptoms like back arching, stiffening a leg, twisting the head in one direction, & can also include seizure type episodes…

i always use the symptoms as a barometer- as we got the meds figured out, the symptoms pretty much disappeared…

~laura

tic dance search results: https://www.infantreflux.org/forum/search.asp?KW=tic+dance+trance&SM=1&SI=PT&FM=0&OB=2

glerking post: https://www.infantreflux.org/forum/forum_posts.asp?TID=417&PN=2&TPN=2

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