Topic: Please Help (Hellbennt)?
Please help, this is my second time around with silent reflux and it’s not any easier. Here is what’s happening. I could really use your help.
- Daughter born 6 weeks early (now 1 week adjusted)
- On breast milk but via bottle (I pump exclusively)
- Supplemental formula (Neosure, milk based) per the NICU to catch her up with weight gain. Stopped formula after 4.5 weeks.
- At 4.5 weeks she started crying during some feedings; arches back, goes for the nipple and seems hungry but after swallowing pulls back and screams, loud gulping and squirming (previously she would eat very peacefully and loved the bottle).
- Can only take 1 – 2 oz before the screaming and crying starts (previously she ate about 4 oz per feeding, comfortably)
- Stool is yellow but seems very water, previously was ‘seedy’
- Stool went from several times a day to once every couple of days
- Some gas (smells bad)
- Some yellowish patches of eczema between her eyes and on her ears (not much but enough for me to notice)
What I’ve tried
*I stopped dairy completely and stopped giving her the Neosure since it’s milk based. She is now getting all breast milk for the past 3 weeks.
*Zantac 0.3 ml every 12 hours
*Had stool tested for blood, it was negative
*Tried different bottles and nipple flows
*Lactation consultant – tried breast feeding her (she falls asleep and won’t feed)
*My son had the exact symptoms in 2010 and had failure to thrive. He was diagnosed with MSPI and GERD. It took 14 months to get things under control largely due to Neocate and Prevacid.
My daughter’s feeding problems are escalating. Nearly every feeding seems painful for her now. She went from eating 28 oz a day to about 14 a day.
1. Does this sound like an allergy to anyone or something else?
2. My health insurance said that in Feb 2013 the FDA no longer approves Prevacid or other PPIs in babies younger than 12 months. I can’t switch health insurance and all the Doctors are under the same constraint. Prevacid really helped my son – any ideas on what I can do?
4. Is she too young for Prevacid considering her age and being a preemie?
5. Any other ideas?
6. If you are kind enough after reading this post, would you please say a quick prayer for us?
Hi, my name is Jeremy and my wife previously used this forum to help her get through some very tough times. After my daughter was born, I decided to quit my job as a scientist and become a stay-at-home dad. As my daughter celebrated her 4th birthday last weekend, I began to think about everything we had been through with her and decided to revisit this website to share our experiences.
My daughter had a severe form of milk allergy/reflux called FPIES (Food Protein Induced Enterocolitis Sydrome). In general, FPIES is different from garden variety reflux in that the immune system bypasses antibodies and reacts directly and violently to antigen (cow’s milk protein). In my daughter’s case, she would begin repeatedly vomiting after exposure to cow’s milk and would then require an ER visit, IV, and hospitalization.
Although I could probably write a book about our experience, I will try to keep my story short. After my daughter was born, my wife was advised to give her formula for a week until her breast milk came in. At about 1 month, she began to show signs of reflux by crying and arching her back after she drank breast milk from the bottle. We were told by the pediatrician that we should just do whatever is necessary to help her drink and be comfortable. This began our quest to help her drink and gain weight. As the months passed, things got worse and our methods to help her more extreme. She would sleep in a swing (elevated position) and would only “sleep feed”. I had a video monitor aimed at her swing and would watch her until her eyes closed…then, I would sneak into her room (being careful not to step on creaky floorboards!) and gently remove her from the swing and feed her. To add to the craziness, I would track exactly how much milk she drank each day and write the data on a chalkboard in her room. As time went by, her weight continued to drop until she was “off the chart”. At this point, a gastroenterologist gave her Prevacid which initially didn’t work until they doubled and tripled the dosage. Then, slowly, she showed some signs of recovery and relief…and her drinking volume slowly went up. Unfortunately, by the time she was given Prevacid (at almost a year old), she had developed a feeding aversion.
During all of this, my wife went on a strict no soy/dairy diet and continued to pump until my daughter was 2 years old. She chose to do this because the only alternative was to give my daughter the gross tasting Neocate. In addition, the research papers I read indicated that breast milk can actually help kids with reflux recover faster and not develop other food allergies. Our pediatric allergist agreed. At around 20 months, my daughter finally passed a cow’s milk challenge at the hospital and our nightmare finally came to an end. Today, she is healthy, smart, and lean (25th percentile on weight) and still doesn’t like to eat large amounts of food.
Although I didn’t go into all of the tests, feeding clinics, and specialists… or the emotional toll this experience had on me and my wife (yes, we are only having one child), there were a few lessons I learned from this:
1. In our case, antacids were effective and should have been (but weren’t) given early to avoid feeding aversions. Our first pediatrician was anti-intervention…we eventually found another one who helped!
2. The hardest thing for me was watching my daughter lose weight and not eat. However, kids, even at a very young age, will tend to do the opposite of what you want them to do. The more you want them to feed, the less they will want to do it. It’s hard, but try to be relaxed about feeding and act like you don’t care whether they eat or not.
3. Realize that your child will be ok and you will get through this. Stressing out about reflux only takes years off your own life and doesn’t help the situation. I stressed out, and looking back, I wish I had found other ways to deal with the stress.
nat_o 2013-07-22 13:56:10
so late last month my life was flipped upside down.
When I woke up to my almost 6 week old having what I thought was
a seizure. I called 911 BC she just wasn’t coming out of it.
they came we went to the er was there for 2 hours she was still having her episode. She was air lifted to AI doupont childrens hospital. I got up there 4 hours later. She had finely just calmed down. Her episode lasted over 6 hours. After tons of test and nothing the only thing they could come up with was sandifurs.
I didn’t realize she even had reflux. She would spit up here and there. Not really fussy, had some wet burps.
Because she EBF I really felt like it was my fault.
Now she’s on zantac 1mil twice a day and just happy as can be.
Now for my issues I have PPA with OCD & vary bad panic attacks
my doctor wants me to start zoloft but how will it effect her???
Any help would be grate 🙂
Thanks ahead of time 🙂
I’m Madeline and I have a son named Roman who was born on 2/7/13. He is exclusively breast-fed. His pediatrician said she thought he had silent reflux and prescribed him Zantac syrup At around 15 weeks old. It works for about a week and then stopped. She also prescribed him Prevacid solutabs, but he had a pretty bad reaction to them. I came up with the idea that he possibly has MSPI because he had green explosive mucousy poops, And was constantly fussy and seemed very uncomfortable. I decided to do the elimination diet two weeks ago and I also started block feeding just in case I had an oversupply issue. He seems to be getting better every day thankfully. It has been a very frustrating past month and I have thought about giving up breast-feeding several times. But for me I feel like it is the best thing I could do for my son, so I’m going to keep trying. These forums have helped tremendously.
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