Now this thread is really old but wondering how the OP and the little girl are doing.

thinking of you and your sweet baby, op.

OP - if you're still here, how is your baby doing?

OP - this post haunts me. I really hope things have improved for you and the baby. Something about your situation resonated with me so much and I think about and hope you guys are well.

I can totally relate to what you are going through. From the time I put my son on formula (around 3 months) we've had issue after issue. He was put on ranitidine at 4 months due to his reflux and was soon diagnosed with severe GERD. From 4-6 months my son gained weight but very slowly and from 6 months on he declined in weight where he was only 13lb 10oz at 9 months. At around 8 months he was put on omeprazole and it changed his mood instantly. He was much more happy and active. His pediatrician sent him to an ENT to see if there was any obstruction (he snorts and snores VERY loudly). They did a scope via his nose and everything seemed fine. At the same time he was always coughing and throwing up his bottles. He was not very interested in purees or solids and refused to put anything in his mouth. Also, he got stomatitis twice which caused a painful mouth infection. His weight had decreased so much that he was diagnosed with failure to thrive. All blood work came back normal. In July he had a swallow study done at Boston Children's Hospital and found out that he was aspirating all types of liquids/food (thin, nectar-thick, honey-thick and purees) into his lungs. They were shocked that he never had pneumonia. He was admitted to the hospital for 3 days while they placed an NG tube since he was not allowed to have anything orally and for him to gain weight. He had an ng tube for over month (a very long hellish month) and gained over 2lbs during this time. He had a repeat swallow study done at the beginning of August and he is no longer aspirating purees, honey or nectar thick liquids. He still aspirates thin liquids. They felt confident that he could go without an ng tube and try oral feeds again. The last two weeks have been difficult. He is turning 1 next week and getting him to have 18-20oz (thickened with oatmeal for consistency) a day is a challenge. We've met with a speech pathologist this week so she could watch him eat to see how he is doing. Once he gets a suck, he can drink but his chewing is very weak. They suggest putting food on his plate just to explore and no pressure for him to eat it. Obviously the main goal is for him to get calories via the bottle vs food. He's not strong enough to get what he needs from solids. In a couple weeks he will be meeting with the otolaryngology team to schedule a triple to scope so they can see if there is a "part" that isn't working correctly or if its inflammation, etc. If they don't find anything then neuro will do tests to see if the brain isn't telling his muscles what to do. My gut from the beginning has been milk/soy allergy due to the formula->caused the reflux->reflux medication didn't work->cause inflammation to his esophagus-> then created the serious aspiration issues->failure to thrive. GI is hesitant to put him on dairy/soy free formula or do tests until his triple scope.

I know this is a long post but I wanted you to know that I'm with you. I know how it feels to worry how much they are eating, the frustration of them not eating and the constant pressure you feel. My thoughts are with you and I hope by now you were able to get this resolved and find some solace.

OP - how is your baby?

Bump

Anonymous wrote:OP. I wish I could get some donor breast milk which is from a dairy, egg, soy free mom. I have searched but can't find any. My biggest regret is that I stopped pumping. That is a huge guilt I carry. I realize that is a very emotional reaction.

OP, I posted before about this. I have two shoe boxes full of dairy, soy, egg, and nut free milk. It's from January-March. I know it's not that much but it's something and I would like to give it to you but I don't know how. I have resisted throwing it away because it seems like such a waste. Do you want it? If so, how can I get it to you? I live in Arlington.

Pp here who suggested dr au yeung - she put my dd on a tiny dose of erythromycin ( it's called eryped) four times a day with meals to increase motility - it worked incredibly well and also had her pooping regularly. Have any of the gis you've seen offered it ? They use it constantly up at Hopkins for delayed digestion.

OP, I am so sorry about your continued struggle. You asked about bottles - is your child old enough to try a straw cup? I am a PP whose child had eating issues (she was hovering around the 2-3% range for a long time), though she would take a bottle. She would NEVER take a sippy cup, but took to a straw bottle really well.

Anonymous wrote:OP. I wish I could get some donor breast milk which is from a dairy, egg, soy free mom. I have searched but can't find any. My biggest regret is that I stopped pumping. That is a huge guilt I carry. I realize that is a very emotional reaction.

If you aren't certain she actually has an allergy to those thing, you may want to consider trying whatever you can get. I am nursing a toddler and if I were in your area I would be happy to donate even if it meant changing my diet. Have you tried sharing your story and making a request on HM4HB on Facebook? I would be very surprised if you didn't get an offer.

Hugs to you. Sorry you are still struggling.

OP. I wish I could get some donor breast milk which is from a dairy, egg, soy free mom. I have searched but can't find any. My biggest regret is that I stopped pumping. That is a huge guilt I carry. I realize that is a very emotional reaction.

Have you tried donor milk? If she has motility issues she might do better with breast milk.

OP, really sorry that you all are still struggling with this. My baby never went to the bottle as she was EBF and then I taught her the sippy cup so no recommendations but just the suggestion to keep trying different bottles since you can't obviously change formulas.