Posted By Posting
Nov 25, 2010
dechri
Are these symptoms "normal"?
I've posted another thread with a general overview of 6 month DDs issues, but I have a few specific questions. We have been chasing reflux/allergy cause and effect issues for 5 months and it becomes such a mess in my head. After months of failed TEDs, DD3 is on Neocate and reflux is her major issue now, vs maddening stomach and lower gut pain. She has been on at least Prevacid since 4 weeks (EES and Zantac in there too, now on Prev and Zan), so her esophagus is in pretty good shape. So now I am not sure what symptoms are not okay and need flagged to our GI dr, which symptoms are just things we have to deal with, etc. Does that make sense? Last Dr appt I tried to tell him how bad things were, but since she is gaining and not killing her esophagus, we got the brush off. - She spits significantly all day long, regardless of when her last feeding was. She will spit huge 2 hours after she ate. She will have bad episodes a few times a day when 1-2 oz come up at a time, repeatedly. - She cannot eat more than about 3oz without triggering one of these episodes. -At 6 months her max "comfortable" feeding amount is 3oz. She will eat 4-5 if we encourage it, but it makes her miserable. -She is chronically congested in her chest and sinuses from choking on and sucking down her spitup. It regularly sprays out her nose. She spneds the first 3 hours of her day hacking to clear her chest, then is okay. -At least 2-3x daily she chokes enough that I have a short freak out because she cant get her breath. 10 days ago she had an endoscopy and the follow up call was saying it looked okay so the meds didnt need adjusted, see you in two months unless she starts losing weight again. What of the above are just things par for the course, and what do I need to be raging to my GI Dr about? Thank you!
Nov 28, 2010
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.
I would consider requesting (or perhaps demanding, if necessary) a referral to a pediatric pulmonologist who can evaluate the possibility that she is aspirating either her feeds, her reflux or both. Even if the acid is controlled, aspirations -- large or small -- can have a significant impact on respiratory health.

I would also encourage you to take a look at Sensory Processing Disorder. A good place to start is at www.sensory-processing-disorder.com -- if you go to "Helping Baby Sleep" there is a link to a symptoms checklist for infants and toddlers. Your daughter is a bit young to be able to distinguish what is normal, what is the reflux and what may be sensory processing challenges, but it may be worth keeping it all in the back of your mind. I mention it because we were always getting the brush off because my son gained well and didn't seem to be in pain, and yet he had all sorts of seemingly related health and sleep problems the source/cause of which could never be pinned down. It took me three years to figure it out -- and this site is actually the first place I ever heard of Sensory Processing Disorder (SPD) or Sensory Integration Disorder (SID) -- that it was the way his brain was processing the stimulus of the reflux that was causing most of his troubles, not the reflux in and of itself.

Also, I just read your other thread and I just want to send you some BTDT ((HUGS)) -- it sounds like you go above and beyond to help your daughter compensate for her challenges, which is what I have always done with my son. I would never change a thing about how I dealt with my son's issues, but I definitely came to understand that it also led to a lot of "he looks fine" brush offs by doctors -- he looked fine because I gave over my entire life to helping him compensate. It often felt like a catch 22, either I help him compensate and we struggle along with little help from anyone else, or I don't and he goes into crisis and we get some help. So, I commend your dedication to helping your baby, and I empathize with all that requires...

Nov 29, 2010
dechri
Thank you for the post and I will check out that site. It is such a challenge. I've just hit the fallout emotionally from all of this. Just the lack of sleep, the not knowing how to parent when I am not nursing (that may sound stupid, but I exclusively BFed my first two and after ending up on Neocate, I feel like my best parenting instinct has been yanked). It is all kind of swirling at this point.
Nov 30, 2010
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.
I don't think it sounds crazy at all, the feeling of not knowing how to parent when not nursing... We are 3 1/2 years in and the main reason I haven't initiated weaning is because I just feel intuitively like it is the one thing that has, and continues, to help my son compensate for the challenges he deals with everyday -- and that equates to a much easier time of it for me than if we were not nursing. So I totally get it. I also understand that emotional fallout and sleep deprivation aspect. During his first year and a half, my son barely slept -- just a fraction of what was recommended for his age, and even that was so extremely interrupted (wakings every 10-60 minutes) that it hardly seemed like sleep. It got a little better by the time he was 2 -- he even slept through the night a couple of times -- but even now the norm is far less than normal sleep and many more interruptions. I cannot tell you how many mini-breakdowns I have had over the years, when I've felt like I just couldn't go on with things as they were. But here I am, 3 1/2 years in, and somehow the strength to keep going just finds it way...I don't know how...but I believe that mamas all over the world since the beginning of human existence have been surviving some of the great challenges of parenting by just letting the difficulty wash over them, and then moving forward, doing what needs to be done... ((HUGS))
Check with your
doctor first!