An intro…

[Anonymous]

*Fiat* I am a mother of three young sons, and a 2 month old daughter. The story of how I found this page begins when my daughter, MM, was one month old. She had been restless and fussy, and then started coughing/choking/gagging. Her being my 4th baby, I honestly didn’t think much of it. She was still nursing all around the clock, and didn’t have a fever, so I didn’t think she was very sick.

After a few days the coughing got worse, and I actually fear she was choking and I brought her to the hospital. There she was admitted for pneumonia and a “virus” which later turned out to be RSV. I still nursed her while she was admitted in the hospital, she was observed after nursing as still choking and gagging, and her o2 Sats would plummet. She was then taken by ambulance to the Children’s hospital NICU, where she spent the next week for aspiration pneumonia.

She was given a NG tube for nourishment,and her status improved incredibly. Two swallow studies were done, and it was determined that she could not tolerate thin liquids. She was aspirating the breastmilk, which, combined with the virus, put her health in great danger.

We are now at home just over a month, and MM has been fed “honey thickened” formula, which for us means Nutramigen, with a tablespoon of rice cereal per ounce. She is doing much better now that she isn’t always fighting to keep her airway open. She is still small for weight and has catching up to do.

Currently, she has been having issues with diarrhea. I am not sure if it is related to winter colds, which have been nonstop this year with all the children, or if it is related to her formula, which is confusing since she consumed SO much cereal with each feeding. Because she was sick and hospitalized and basically has to catch up on a month of weight gain, her diarrhea is quite a concern to me. I will most likely take her in to her dr before the week is out, but my objective here to gain knowledge from others who may have walked this path before me. Thank you!

Edited to add: MM was put into the hospital’s Apnea/Reflux program, and now is required to be in an upright position at all times, and sleeps in a Danny Sling.

Fiat2013-02-19 09:18:26

[Anonymous]

Hello and welcome. Although my children suffer from digestive problems. the biggest things for them were severe pain, throwing up, and diarhea. And although they gagged and coughed I do not know whether they aspirated or not. By the time I joined this site, my children were doing much better and weren’t babies anymore. But now I am surprised to find out there there were many different tests i could’ve had done for them and many different formulas and meds. Anyway, I don’t know that I can really offer much advice for you. The thing that helps my children the most is probiotics and digestive enzymes. It may be something you want to look into. It’s not a cure all and everyone reacts differently to things but just thought I could at least tell what we found to help. 🙂

I’m glad your little one is doing better than she was before and I hope you can find out what is causing the loose stools and get it under control.

[hellbennt]

any chance you can look into a thickener to get that honey consistancy?

something like Simply Thick or Thick It?

can you ask the person (SLP) who did the Swallow Study?

Maybe the rice is too harsh on her already delicate system?

also, check the ingredients in the rice. sometimes milk protein is ‘hidden’ in the ingredients & sometims soy protein is ‘hidden.’

[Anonymous]

Thank you! MM was seen today. She is not gaining and is now FTT. She was just switched from Nutramagin to Neocate, which we will start tonight.

She began needing formula in the first place because Simply Thick and Thick It are not approved for infants her age, and rice cereal doesn’t thicken breastmilk, only formula.

So, we’re in a tough situation today. MM hasn’t had an appetite, and we are waiting to her from her FFT work up. I am hoping that the Neocate thickened with rice will allow her to eat and gain.

[hellbennt]

please pay attention to ingredients in the rice cereal &

also consider barley or oatmeal as other options (paying attention to ingredients)

[hellbennt]

any updates? how is everything?

what is working and what has not worked?

please share

this site needs feedback like yours to help others!!

Looking for GI: https://www.infantreflux.org/forum/forum_posts.asp?TID=660

hang in there!

laura

[hellbennt]

hello?

any updates?

[Anonymous]

Yes! I have an update, but I’m not sure how good of one it is.

Three weeks ago my little lady stopped eating all together, the point where she lost a significant part of her already low weight. She was hospitalized again for 5 days with a feeding tube. We were discharged after she demonstrated again that would tolerate a minimum amount of calories. We are now working to keep her eating and trying to avoid a feeding tube.

I haven’t commented or been active on the boards, because with her last admission more labs were done, which have us going in a different direction. She is now in the process of being diagnosed with a very rare genetic syndrome. Eating difficulties are only a symptom of much greater problems going on with her development. Again, my hope is that we can avoid a feeding tube, but it’s funny how your perspective can shift, because now a feeding tube is the least of my worries.

She is on Neocate now, with a corn starch based thickener, and at least that was an improvement over the rice cereal and nutramagin, which she had outright began to refuse before her last admission. At least we are moving in somewhat the right direction. Thanks!

[hellbennt]

hugs!!! How did they find this syndrome? what made them look? I’m asking because it might help others…

HUGS!!!

[hellbennt]

Bump

[hellbennt]

please???

[Anonymous]

My daughter has a rare chromosomal abnormality. It does not have a specific name.

The only information I can give are my “hunches” as a mother of four. I breastfed my first three children just fine, for well over a year. My fourth child was hospitalized twice within two months for feeding issues. At her second admission I was the one who actually ASKED the doctor to run a chromosomal test on her. Because many of her other labs came back normal, they thought her problem was an isolated feeding problem. I KNEW there was something wrong, even if the doctors weren’t convinced yet.

All I can is this. A baby, in theory, SHOULD be able to eat. They SHOULDN’T aspirate breastmilk or lose weight as infants. If they do, there is PROBABALY something wrong, either mechanically with actual organs or another underlying problem. My child has now been diagnosed as delayed and is disabled. She was like this from birth, but is only now diagnosed. Parents, your intuition is vital.

[Anonymous]

I am so glad you followed your mommy instincts!

[Author]

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