Frusterated with Multiple Misdiagnoses on Newborn

Wow I am so sorry to hear of all this. I have no answers for you directly related to the issue. I would just suggest you breastfeed as much as possible and perhaps have friends and family research the internet for more information.

This kind of sounds familiar to what happened to my sister this past Summer. My sister was 13 and was having really bad stomach pain which turned into her throwing up bile and not able to keep any food down at all, fever, and in horrible pain that morphine wouldn't even touch. The finally decided to do surgery to see if they could find the problem. She was diagnosed with Mekel's Diverticulum, a small pouch that formed off of the small intestine. It was something that she was born with but it can take years to start showing any symptoms. She had blockage in her intestines and every started to back up into her stomach. She had horrible breath and that is also a sign. The doctor's wrongly diagnosed her for a few days which was silly that they didn't even think there could have been a blockage but the minute I typed in her symptoms on the internet that was what showed up. I would ask your doctor's about this. It doesn't hurt to ask I guess and your probably ready to get your little girl feeling better! Good luck and my prayers are with you and your family. I hope they figure it out for your daughter soon.

Hi Aidensmommy,
I am SO sorry for all of this illness and stress and horribleness!

I just wanted to point out that in your own words "She is stumping the best docs in MN according to her <(OWN!!!)> doctor."
Ask her doctor, if this was your child, where would you take her? What hospital, what state and GO!!!

To Amom2: I think your prayer was beautiful and I'm glad you took the time to offer comfort to Aidensmommy.

We are all keeping positive thoughts for you. There are some good posts here, and we hope they find an answer soon.

Please let us know what happens.

my friends little boy has what 2bsmama is talking about and the only place that has been able to help them is a hospital in Nebraska they were living in Houston at the time and the childrens hospital there said there was nothing they could do and to take him home to die and she said not a chance and did the research and they called the Nebraska hospital and went up there and that was 5 years ago and he is doing really well he has for sure had his ups and downs but he is growing and thriving and without the hospital in Nebraska he wouldnt be with us right now..good luck to you and please contact the hospital in Nebraska i think its called university of nebraska hospital i would google it

I don't know how you feel about this but this hospital was ranked number one in the USA for children.
#1
Cincinnati Children's Hospital Medical Center
Cincinnati, OH
Ranked #1 in Pediatrics: Gastroenterology
Ranked #2 in Pediatrics: Pulmonology
Ranked #3 in Pediatrics: Kidney Disorders

I hope you can find some answers soon. Just from what I read it sounded to me like it could be her gall bladder, but that would have been easy to diagnose...You and your daughter are in my thoughts. Keep us informed.

No idea without a working lab, MRI machine, and your daughter. :( :( :( Even with everything they've ruled out already, I can think of about 20 things it *could* be. I agree with your docs, however, that a twisted intestine or partial blockage sounds most likely at this point. About 1:4 babies in my family have to have abdominal surgery to correct a twisted intestine. Some make it as far as 6-9mo before symptoms present, other, like your DD need it almost right off the bat. But we know we're prone to such things, so they're spotted fairly quickly. Doesn't keep the hospital from running all of the exclusionary tests however... because it would be bad medicine not to. Surgery is typically saved as a last resort. Doesn't make sense to cut before knowing if it's something that *can* be fixed with surgery.

Diagnostics is a lot like walking into your child's room when they're crying. It's PROBABLY wet or hungry or scared... but it COULD be
- sick
- in pain
- tangled in jammies or blanket
- bruise from wacking themselves on the crib
- teething
- spider bite
- stranger broke in and pinched her and slipped back out
.... and about a list of 100 other things.

Parents and doctors BOTH start going down the list of "most likely" in order. It makes no sense to set up security cameras to check for strangers breaking into your home to pinch your infant without checking to see if they're wet or hungry. Ditto... if they have a fever then you start trying to figure out what KIND of sick they are. Doctors work the same way. It's frustrating to both parents and doctors when the reason ISN'T high up on the "lets check" list, because until the problem can be identified it can't be fixed. But you have to keep exploring avenues until the reason is found and fixed.

early antibiotics would have killed all good bacteria in her gut. not sure that's the only problem but it may exacerbate another gut issue. taking a probiotic yourself might help restore the good bugs in her gut if you continue to breastfeed.

i'm so sorry this is happening. sounds very painful for your family. are you open to integrative medicine? you say she is stumping the best docs but only the best conventional docs. i am a firm believer in conventional medicine but my daughter benefitted greatly from a nonconventional treatment so i also believe in that. message me if you are interested in other approaches.

I knew some people whose baby was in the hospital for months with the same symptoms, they did all the tests you mentioned above and the doctors were stumped. It turned that she just had a severe milk allergy. Have them try soy formula for a few feedings and see how she does. Sometimes doctors over look the simplest of things and go straight to the big tests on babies.

is she solely breastfed, or formula and breastmilk, does she have milk allergy.
I have had a few friends who's symtoms were as simple as that. I am sorry you are going through this it is not easy, please remember the hospital is trying all they can...don't get angry at them if they misdiag her, it is not easy. I know this first hand I spent days in ICU because we could not figure out what was wrong and I could verbally give symptoms. You sweet little bundle of joy can't speak which makes, making a diagnosis even harder. Praying for you and yours.

I am so sorry you are going through this with your sweet baby girl.

A few things came to my mind you can ask her doctor about....Paralytic ileus, also called pseudo-obstruction. Or what it really sounds like ( a friends 18 mo old had this) is An intussusception. By definition it is a medical condition in which a part of the intestine has invaginated into another section of intestine, similar to the way in which the parts of a collapsible telescope slide into one another.[1] This can often result in an obstruction. The part that prolapses into the other is called the intussusceptum, and the part that receives it is called the intussuscipiens.

Early symptoms can include nausea, vomiting - sometimes bile stained (green color), pulling legs to the chest area, and intermittent moderate to severe cramping abdominal pain. Pain is intermittent not because the intussusception temporarily resolves, but because the intussuscepted bowel segment transiently stops contracting.

I will be praying for your strength and for wisdom for her doctors!!

I"m praying for you too. When my daughter was born, she stumped the drs too, so i know how very very scary and frustrating this is. My daughter is fine now and is one of the few people in the world that have the skin disorder she has. There are many many other people out there that have diseases and disorders that are totally uncommon. And they have been throught what you are going through right now. I'm praying that you get an answer, that your drs are wise and that you and your DD have strength.

I am sorry I don't have any info to give you, but wanted to send you my strength, thoughts and prayers to you and your family that is going through this with you!
HUGS & Prayers!!!