Detroit Babies

AlmostMrs.F

Hi there! I saw your post below regarding your DD'S GERD and I hate to say it, but im in a similar situation with DS. Sunday night I thought for sure he had a seizure, his whole body tensed up, his muscles were spasming, his eyes rolled into the back of his head and he passed out. After a ton of tests they confirmed that he has bad GERD and he was choking, which caused him to pass out and stop breathing. The hospital sent me home with some Zantac and Im following up with my pediatrician next week, but in the meantime I was wondering if you have any advice for us? Im seriously scared by what happened and I feel like I cant even leave the room without worrying about him choking and me not getting to him in time. Any advice is greatly appreciated.  Sad

Re: AlmostMrs.F

  • Oh man. I'm so sorry you are going through this. Sad The tensing up is called Sandifers Syndrome - I hate it but not as much as the choking. It's going to be a rough road, and we're still working on getting all better (she had a bad choke yesterday). www.infantreflux.org is a great resource. There is also a forum, which helped me a lot (its very ver difficult for people to understand the severity of the situation unless thet see it or live through it) Here is what has improved the Gerd for us:

    - We thicken her formula with rice cereal. When I was nursing we thickrend pumped breastmilk. We dont use much, but it helps her ability to keep it down.

    - She never gets put flat on her back. We have a pillow on her changing pad, and she sleeps on her stomach in a tucker sling at night. We have the wedge/sling combo, and it has hekped for sure. She sleeps at the foot of our bed in a packnplay, and DH and I sleep with our heads at the foot as well. www.tuckersling.com

    -Limit time in the carseat. Our pediatrician said the angle they sit at can actually cause it to get worse.

    -We keep her upright  for at least 30-45 minutes after feeding. She is geld completely vertical.

    - I keep her in a Moby wrap a LOT. It holds her in the verticle position, and i get to use both of my hands to do other things. I would recomend this  for sure. It became extremely difficult for me to put her down, since she was spitting up and chocking nearly every time at first (in her swing, her bouncy seat, etc) The moby wrap helped me get my life back a little bit. www.mobywrap.com

     - The Zantac tastes TERRIBLE. I slip in while I am feeding her, and it seems to have helped. We also got it flavored to try to cover the peppermint at the pharmacy. It helped, but she still doesn't like it. Crying

    -Don't hesitate to call your pediatrician frequently. Ours has been wonderful, and we see her around once a week. It's a really difficult and slow process to get GERD all sorted out, so having an awesome pediatrician makes a HUGE difference. Ours has recomended all the things that I've listed (aside from the moby wrap), and I would talk to your doctor about trying some of them. The Zantac will help, but it takes a full 2 weeks to be completely effective. We are heading in to the pediatrician today to add prevacid and up the dose of zantac (right now she gets .5 mL every 8 hours). If you aren't seeing results with the Zantac, definitely call your pediatrician ASAP, there are a lot of other meds they can try.

    I hope this helps. Absolutely let me know if I can do anything at all, and please keep me updated on how Cole is doing. I am so sorry for the poor little guy. I will definetly send a prayer or two up for you guys. The most important thing to remember is that it will get better, it just takes time. 

  • Wow! Thank you so much for taking the time to provide all of that information. It is so helpful and really gives me hope that we can get this under control for him and DH and I. And you are so right about people not understanding unless they've seen it or been through it because it is absolutely horrifying to see your baby go through that. I thought for sure he had a seizure the way his body reacted and then to watch the life fade out of him when he passed out. There are no words to explain that helpless feeling. Im definitely not happy that we share this experience with our children, but your words of encouragement and advice are greatly appreciated. Its nice to know that were not alone and things WILL get better with time. Thank you for everything and please keep me updated on your LO as well. Ill keep you and your family in our prayers! Have a nice holiday Big Smile

    Edit: I wanted to add that I think its really sad that the hospital never mentioned Sandfiers Synrdrome. I just youtubed it and theres a ton of clips of babies on there... this is EXACTLY what Cole does. I cant wait to talk to our Pediatrician. Thanks again!

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  • I just wanted to say I will be thinking about you guys too and I hope everything turns out ok.
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  • Thanks Amy!

    Neely- I can't believe they didn't tell you about the Sandifers either... maybe because it's just a by-product of the GERD they thought it wasn't worth discussing until you saw your pedi? 

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