Infantreflux.org | baby stopped breathing

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July 7, 2006 at 4:21 pm #11165

Anonymous
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Hello-

My name is Dawn, and I am a mother of 6, four of which have GERD. I thought I had a pretty good handle on this, but my youngest (5 months) gave us all a pretty good scare on Monday when he stopped breathing and turned blue. He was unresponsive to anything I did to revive him for a good minute. We of course called 911 and he was admitted to the Children’s Hospital for 3 days. They did an EEG, a swallow study, and bloodwork. We were also referred to an ENT for an airway evaluation. In the end, they decided that it was a laryngospasm caused by the reflux coming so far up. His poor little vocal chords were all red and swollen from the acid. He had been on Zantac for the last few months but has now been put on Prilosec. He’s 19 pounds and gets 5ml each morning. Aren’t they supposed to get two doses per day? My other kids do…

Fast forward to today…I’m a wreck! I’m afraid to leave him for a second for fear that this will happen again and he’ll die. I’m up and down all night making sure he’s still breathing. I’ve moved him back into our room so that helps some since I can just reach over to feel for his breath. The doctor said that when the carbon dioxide builds up enough, their brains will override the muscle spasm and relax which allows them to resume breathing. Somehow that’s not too reassuring. I guess I’m looking for someone who has been in this same boat…has anyone else ever had this happen to their child?

In some ways I’m a little P.O.’d because it was difficult to get the doctor to treat him for reflux in the first place. He kept telling me it was colic. Apparently that happens to a lot of moms. I figure that if it was bad enough to cause him to quit breathing, it’s pretty significant. Well, I guess I should quit this rambling or this post will get obscenely long! Thanks to all who read through to the end of my whine-fest!

July 7, 2006 at 4:58 pm #11167

Anonymous
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Welcome to the site! I’m sorry that you’ve had such a rough time. Kaelyn also turned blue and stopped breathing as a result of her reflux. Her problem was that we had switched to a new formula and she couldn’t figure out how to clear it when she would spit up. She was 4 weeks old at the time. They admitted her to the hospital, switched her formula, and observed her for 5 days. Then they sent us home with a pulse-oximeter monitor. Have they mentioned a monitor to you? It is the only thing that made it possible for us to sleep at night. She was on it until she was 6 months old. It was a pain to deal with, but gave us major peace of mind. If they don’t want to do that, you could always get an Angel Care monitor. It goes off if they stop moving (including breathing) for more than 20 seconds.

Our ped said that no child ever choked on spit up and wasn’t able to clear it. Then it actually happened with Kaelyn and he said, well it hardly ever happens. So, now I tend to be nervous when a doctor says something like “the brain will override the spasm”. So, I definitely understand your concerns. Good luck!

July 7, 2006 at 5:01 pm #11168

Anonymous
Inactive

Hello and welcome.

I’m sorry about your scare with your little boy. I can’t imagine the terror you must have felt. Also, I don’t know how you’ve managed six children, and four with GERD. You must have the patience of a saint! Two of my three have had it and I would not even consider having a fourth!!

Most babies do need more than once per day dosing of PPI’s. Here’s a website where you can check his dose. http://www.marci-kids.com/ Considering what happened to him, I’d really look into his dose, make sure it’s high enough, and try to get him on two to three times a day dosing. I had to print the marci-kids info and fax it to my doctor before she’d prescribe an adequate dose for Myles. And the right dose made all the difference in the world.

Many moms continue with Zantac for the two weeks that it will take for the PPI meds to kick in. Just be sure to give them at least two hours apart. It seems that he probably outgrew his Zantac dose so you should probably check his dose on that as well so that you are giving him enough until the Prilosec starts to work. I’m pretty sure Laura’s intro link has a link for Zantac dosing.

Here’s Laura’s intro link….long but very informative. You may want to bookmark it so you can read when you have time.

https://www.infantreflux.org/forum/forum_posts.asp?TID=853&am p;PN=1&TPN=1

I hope your little guy finds relief from his reflux pain very soon, and I hope he never has another episode like that.

July 7, 2006 at 5:37 pm #11170

Anonymous
Inactive

Kim and Christine-

Thanks for the welcome and quick responses to my post!

The doctor talked about an apnea monitor while we were still in the hospital, but said that they were very unreliable and more of a pain than anything. At this point, I’m seriously considering asking for it anyway. I won’t get anything done around here if I have to stop every minute to check the baby’s breathing.

I went to check out the marci-kids website but the words were so small I couldn’t read anything. It must be our computer that needs something re-set. I’ll definitely look at Laura’s link on Zantac dosing. I’ll bet that’s exactly what he needs right now. It never occured to me that the Prilosec wouldn’t help right away. No wonder he’s been so irritable and pukey! Good grief! Why wouldn’t the doctor just tell us to do that right off the bat? That makes no sense at all. Thanks for the heads up! I just called the doc and left a message about it.

Thanks again…I’ve got a lot of reading to do this weekend!

July 7, 2006 at 6:44 pm #11173

Anonymous
Inactive

We never got any sleep until we got a monitor. If you can find a doc that will give it to you– I say go for it. For us, it was reliable enough to keep our child alive.

I wonder what he meant by “not reliable”???? Maybe getting the tabs on correctly? That’s the only thing I could think of. If the tabs are on right, it would save any childs life by alarming all of the household.

July 7, 2006 at 6:45 pm #11174

Anonymous
Inactive

Hello again!

The doctor gave us the okay to keep him on the Zantac for the next couple of weeks – yay!

I was just looking at the Angelcare monitors and wondered if they would still work if the baby is sleeping on one of those wedges? The one we ordered is pretty thick looking. (30 degrees)

Thanks!

July 7, 2006 at 7:00 pm #11176

hellbennt
Keymaster

hi & welcome!

I’m the above mentioned laura

Please look through the link- my guess is that your baby isnt getting enough meds at all

1) look at your prilosec bottle it should say __mg/ml so you can see how many mgs your baby is getting. I hate to be a doubting Thomas, but like i said, I doubt it’s enough

2) please look at the link called ‘Prevacid 101’ (there’s info there about prilosec too, i should change it to PPIs 101 ) and from there pleasereaad about HOW to ask for the prilosec to be compounded (made into a liquid)…again, I hate to be so gloom & doom, but I wouldn’t be shocked if it wasn’t done properly…

3) once you research & find out what it is your baby needs, FAX your doctor. start off w/ a big THANKS. then state the facts. then make your request. short & to the point. the dose for baby should be __ according to his current weight of__, etc, like that…then THANK again.

4) after you figure out a ‘proper’ dose of zantac, make sure you give it at least (if not more) 2 hrs seperate from the prilosec

So glad you found us! everyone here is so amazingly wonderful & resourceful & supportive!

~laura

ps: thanks for everyone for providing my welcome/intro!! keep doing it, as who knows when this baby will come,lol

July 7, 2006 at 7:21 pm #11177

Anonymous
Inactive

Welcome – you have found a great place for support and friendship. Glad to have you here!!

Robin

July 7, 2006 at 7:48 pm #11179

Anonymous
Inactive

Hi Amy- I think what the doc meant by unreliable is a lot of false alarms. How long have you had Henry on the monitor?

Thanks Laura! I checked the bottle and we have 2mg/ml. If I understand the dosing charts correctly, he’s definitely not getting enough – 10 mg once a day. Is this Dr. Phillips someone that is well known and respected within the medical community? The reason I ask is because I could easily see the doc pooh-poohing whatever info I come in with. I had my 5 year olds pulmonologist tell me that the docs at our Children’s Hospital don’t believe in reflux…they don’t consider it a disease. I really don’t understand that one at all. Have you ever heard that before?

July 7, 2006 at 7:55 pm #11180

hellbennt
Keymaster

he’s a pharm.D

I’d just FAX the doctors his research.

I have heard of doctors ‘not believing in it’ ERG

there have been mothers who travel far & wide to find a good doctor…

from my welcome/intro there’s link about finding a ped Gi- maybe there’s one listed near you…

good luck!

July 7, 2006 at 7:58 pm #11181

Anonymous
Inactive

Dr. Jeffrey Phillips is the Director of Research in the Surgery department at the University of Missouri in Columbia (I think I got his title right). He is a pharmacologist and has developed many medications, including Zegerid. I went to the U of M website and did a search for his name and you wouldn’t believe the number of amazing articles that come up for him. To me, he ranks up there next to God. I don’t know what I would have done without his recommendations and support, as well as that of Joel who works with him.

I can’t say enough good about him and even my doctor has utilized the site now. Good luck

Robin

July 7, 2006 at 11:04 pm #11188

Anonymous
Inactive

Hi! We have been through blue spells ourselves. You must trust your own instincts, as you already seem to be doing. Muscle spasms? DD has laryngomalacia. We have been dealing with the red, swollen tissue, blue spells and stridor since day 1. It was difficult to be taken seriously and I can’t understand why. We are talking about airway obstruction here! We finally found help from a ped. ent dr and our pulmonologists. They told us that a monitor would be more hassle but I insisted and had them call a company to deliver one the day we left the hospital. Also, baby was always upright. I never laid her flat not even to change her diaper. We have a sling/wedge combo that she slept in.

We are still waiting for the laryngomalacia to go away, but it seems to linger with the irritation from the reflux unfortunaltey. I found alot of help from some expert moms on this site and alot of info from searching through past posts. Also, found some great drs. by looking on a post called “finding a gi in your area”. Actually found a gi doc. that got. dd on the right dose of ppi and would listen to the most recent research. Best of luck to you, baby, and family!

July 7, 2006 at 11:11 pm #11189

Anonymous
Inactive

I’m so sorry for what you’ve been through. I would definitely ask for the apnea monitor so that you can get some peace of mind. Good luck to you.

July 8, 2006 at 4:51 pm #11211

Anonymous
Inactive

The baby had another episode this afternoon – much quicker and less scary than the first, but scary enough even so. We’ll be getting that apnea monitor on Monday, but I’ll be on pins and needles until then. (Probably after that too.) When I called the doctor he said to start thickening his formula with rice cereal and that he’d be keeping him on Zantac as well as Prilosec indefinitely. You can bet I’m going in next week armed with the Marci-kids info on dosing.

For those of you who have been through this, did your baby’s eyes go off to one side? Were they very tired afterward? I’m still not convined we aren’t dealing with seizures as well. My little guy hadn’t eaten in nearly 3 hours when the episode happened (He eats like clockwork every 3 hours.) and he’s been out cold since. That’s been about an hour and a half now. I just tried to wake him up to eat and he just won’t stay awake.

Thanks to all of you for being so ready to help and offer support! I’m so glad I found this board!

July 9, 2006 at 12:55 pm #11221

Anonymous
Inactive

I’m so sorry that he had another episode like that. The monitor will definitely help give you some peace of mind. Kaelyn’s eyes tended to roll like that as well. We actually did an EEG when she was a year old to rule out seizures and everything was fine.
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