Posted By Posting
Nov 01, 2012
tiasmama
Macy, mama to Alexia, 2nd child with reflux. Born 4.5 weeks early on Oct. 20th. Showing signs of reflux very first week. Exclusively breastfed, starting elimination diet 11/1.
Back again with 3rd child born 10/20
Hello mamas and daddies, It's been 5 years since I was on this forum daily finding solace and priceless advice I could not find anywhere else. Now, I find myself back here again with our 3rd daughter, Alexia. Fortunately, I know what to look for and what my first steps need to be, but I'm sure a lot has changed in 5 years also. The Pediatrician told me they no longer give children Reglan for starters. I am beginning an elimination diet today. Rice and squash for breakfast. Yum Yum. It'll will be worth all the sacrifice if this helps manage her pain. I'm scared it will be more like Tiadora, where it does make a difference, but we still needed to be on a constant roller coaster of different medication with none really truly fixing it until she finally just outgrew it and even then, years later, she still refluxed in her sleep, but it wasn't painful and didn't seem to bother her. Of course this is why we never took her pacifier away either and now she has crooked teeth. lol Oh well. Anyway.... I'm back. I can see some of you are still here too and I am so glad to be able to share in the wealth of knowledge that is here. I would not have made it sanely through the ordeal last time without the support I found here and I'm so glad to be able to join the community again. Hello!!
Nov 02, 2012
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Hey! Welcome back, though I'm sorry, too, that another ticket to ride the reflux roller coaster is what brought you back... Congratulations on Alexia's arrival in your family. Keep us posted as to how things go with the elimination diet. Was she in the NICU? Did she have any interventions at/after birth? 4.5 weeks early means an even more immature digestive system, so she'll need some time just to catch up and she may be quite a bit more sensitive to foods you eat as well as every other type of stimulation. Is she nursing well?
Nov 02, 2012
tiasmama
Macy, mama to Alexia, 2nd child with reflux. Born 4.5 weeks early on Oct. 20th. Showing signs of reflux very first week. Exclusively breastfed, starting elimination diet 11/1.
Hi!!! I was so excited to see you still here. How is Lorenzo? Alexia spent 2 days in NICU, she had fluid in her lungs and they couldn't control her rapid breathing. I started breastfeeding the minute they let me. She is nursing like a champ, but so sensitive. The gagging, back arching, constant swallowing, face turns beet red and the whimpering: I'm having flashbacks. I even keep calling her Tia. lol It's been 1 day and I'm bored with the diet, but if it helps I'm willing to do it. 13 days more and we can see if it will make a difference. She has a dr appt next week too. I don't want her to take the barium test. I was so traumatized when they did it to Tia. Hopefully they have less aggressive ways to test for it now. I'm 100% positive she has it, so we'll see what the dr says, I'm suspecting I should just go straight to a specialist this time. The board is so light on topics. 5 years ago we ran through a page a day. Remember?
Nov 08, 2012
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Ah, yes, I do remember the old days, when I spent every available minute here just to try to keep some grasp on my sanity... Lorenzo is doing relatively well -- it has been a real adventure, the past five years... One thing that I have learned from our experience, which may have an impact on Alexia, is the frequency with which preemies, refluxers and NICU grads experience sensory integration/sensory processing issues. A newborn's neurology is so simultaneously fragile and rapidly growing, and the kinds of sensory overload that come from being in the NICU and having reflux have the potential to really challenge some elements of that rapidly growing neural superhighway. And when a baby enters the world four weeks early, that, too, can set the stage for sensory sensitivity. One of the reasons I think it is so important to take this into account, is that a baby or child with sensory integration/processing challenges may react to things like reflux in what amounts to a double whammy -- the typical reaction to the pain of reflux, and also a sensory overload reaction to the sensation of refluxing/having refluxed. It can get confusing when it comes to medication, because a baby with sensory challenges may respond physiologically very well to reflux meds, but still have a sensory reaction to refluxing that looks like physical pain (and in a way it is -- but it won't be helped by meds). Plus they may react to a host of other sensory experiences -- like gas, having a wet diaper, growing, the feeling of clothing, the sounds around them, etc. -- in ways that also look like physical pain.

I encourage you to look into SID/SPD (Sensory Integration Disorder/Sensory Processing Disorder) simply because being aware of how to both protect an infants senses and facilitate the healthiest neurological sensory development is a 'can't hurt, certain to help' undertaking. The two best starting points for exploration that I know of are a book called "The Out of Sync Child" by Karol Stock Kranowitz, and a website you can find at www.sensory-processing-disorder.com. I'm happy to share more of our experience with the sensory issues and reflux combination if you want, as well.

I'm so sorry you are on the roller coaster again. I hope, for both your sake's, that it proves to be a short ride!

Nov 10, 2012
tiasmama
Macy, mama to Alexia, 2nd child with reflux. Born 4.5 weeks early on Oct. 20th. Showing signs of reflux very first week. Exclusively breastfed, starting elimination diet 11/1.
Wow. That's a lot to take in. I'm not even used to dealing with the reflux yet. So, you're saying what I interpret as pain may just be sensory overload? Interesting. I was wondering why my second (Tia) is so sensitive and seeks constant physical stimulation. Her behavior has always been a bit off, over emotional, over sensitive, and I can see where she would fit into this classification. And now I have this to look forward to again. Ugghhhh. Just when I supposed it would end at about 8 months, now there are ramifications beyond the reflux, but not due to the reflux, just coinciding with it. Jeez. I gotta sleep on this. Let me e-mail you in the morning. I have some questions for you.
Nov 12, 2012
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
got your email, and will respond as soon as I have time to sit down and be coherent :)
Check with your
doctor first!