HELP

anonymous

New member
My daughter will be 5 months old the 17th. She is exclusively breastfed. I pump and am able to get 4 ozs every time.

She has only gained 3lbs 5 ozs since birth--that 3.5 lbs includes supplementing everything I can pump in a 24 hour period, which is generally 12-18 ozs daily. She was 8 weeks old (2 months old!!!) before she regained her birth weight, and between 4-6 weeks old actually lost 3 ozs. No one believes there is anything wrong. She pooped about 10-15 times a day for the first 2 months. She is not "salty." She eats until she falls asleep, wakes 20 minutes later, eats again. Since the child has been born she has never taken a nap during the day of longer than 45 min to 1 hour. She cries when she has to go to the bathroom...I mean "colic" cries. However, her poops have slowed down now to sometimes 2x day or maybe 3x eod. In my gut, something is "wrong." No one will listen!!

What is "normal" for a CF breast fed baby?

She is not my first breastfed baby. She had jaundice with values up around 19 for days. She was on a bili blanket for 16 days. As a matter of fact, she was 17 days old before she had a bili level below 15.

She is so tiny...so tiny... I stripped her down naked a laid her in the floor...her ribs are beginning to show...

Could someone please tell me what is normal for a CF breastfed baby?

Have been to LLL, 2 Lactation Consultants, 3 different pediatricians, an ENT, etc...if someone tells me she is FINE one more time, I'm going to scream...

Please someone respond, I need to know what to do...
 
im so sorry <img src="i/expressions/face-icon-small-sad.gif" border="0"> i wish i had something to try and comfort you <img src="i/expressions/face-icon-small-sad.gif" border="0"> take her to your CF doctor sometime if you havent already and try to scoop up some information...im sorry <img src="i/expressions/face-icon-small-sad.gif" border="0">
Good Luck!!! <img src="i/expressions/rose.gif" border="0">
 

anonymous

New member
Hello,
My son was exclusively breastfed and has CF.
I was feeding constantly every 20 minutes some days because he was so hungry.
My nipples were raw.
He pooped maybe 8 - 10 times a day and to me they just looked like a typical baby poo but after we started on enzymes I could tell the difference.
His weight gain was slow although we only lost weight once before he was diagnosed it is really different for everyone.
Don't let them brush you off and tell you to supplement with formula etc if you feel something is wrong demand that they get to the bottom of it.
If she isn't gaining well now it will only get worse.
I was told to pump in between feeds, and I could never get anything as he was feeding so often my body didn't have a chance to get another supply up.
I was totally confused and bewildered about the whole thing.
I wish you the best of luck
Rebekah Lambert
Mother to Matt 22 months w/CF and baby on the way wo/CF
 

anonymous

New member
If I am reading this right you do not know if your baby has CF or not. Your story sounds a lot like ours. Our baby was born at a low birth weight and her weight increase steadily declined until she stopped growing at about 5 weeks. She ate about every hour and I supplemented because breast milk just wasn't enough, and because she cried continuously I was too exhausted to give breast milk. We took turns staying up all night and in our hearts knew something was wrong.
We changed pediatricians every week until someone finally listened when we said something was wrong with her. We had even gone to the emergency at the Children's Hospital twice and were sent home. Our current ped. agreed there was a problem and had her admitted for failure to thrive. The sweat test for CF is standard here for failure to thrive, and that is how she was diagnosed. She was also having 10-15 bm's per day, usually within an hour after eating. She cried so much she lost her voice.
I think you need to insist that your baby have a sweat test, if not already diagnosed. I read your posting and it sounds like our story. Our daughter is 4 yrs old now and doing well, but only because she was diagnosed and is getting treated properly.
Good luck to you and let us know how things go.
 

anonymous

New member
My baby girl had not gained back her birth weight at five weeks of age. Her doctor said we needed to go down to Children's hospital ER and stay there until someone figures out what is wrong. He had her admitted as failure to thrive. He said she was eating enough (he made me pump and feed her by bottle) that she should be gaining weight. She was also having about 12-15 bowel movements a day. We had a probable diagnosis within a few hours (based on an analysis of her stools) and a definite diagnosis two days later. She started taking enzymes that day and gained weight ASAP. The diagnosis was hard, but it gave our daughter the chance to have a bright future.
She is now three and doing very well.
As you have already figured out doctors do not know everything. Take her to the closest children's hospital that has a cf center. You can find out what centers are closest by logging on to: http://www.cff.org/chapters_and_care_centers/
Demand they run a sweat test.

Also, some CF babies have problems with jaundice at birth.
Sharon, mom to Sophia, 3 and Jack, 17 months both with cf
 

anonymous

New member
Also, what city do you live in? Maybe one of us has a good recommendation for a pediatrician, someone who can help you identify what is going on with your little girl. You could also try to find a pediatric GI doctor, but sometimes they take weeks to get an appointment.
Sharon, mom to Sophia, 3 and Jack, 17 months both with cf
 

anonymous

New member
I'm so sorry about all the frustration you are going through! We saw SEVERAL pediatricians before a physician's assistant (bless him!) took us seriously and wrote us up a sweat test. Be persistant. You've done your research and you know enough about cf to be concerned that this could be a possibility. Explain this to your Dr. If he or she won't listen, change Drs.! Plead with them to write you up an Rx for a sweat test and have your daughter tested ONLY at a children's hospital! These tests are inexpensive, fast, and easy! Please let me know if you have further questions. I hope you are able to get this resolved. My heart goes out to you...

Carey
bono40@aol.com
 

anonymous

New member
Take her to a CF center for a sweat test. My daughter was exclusively breastfed and terribly underweight when she was diagnosed, all bones like yours. We started her on enzymes before every nursing and she started to gain weight.
 

anonymous

New member
Another thing to consider. I know a mom whose baby was exclusively breastfed and not gaining weight and the problem turned out to be HER thyroid! She was essentially making skim milk. There are many possible reasons this is happening but clearly you need to get to the bottom of it and get your baby the nutrition she needs, even if that means the dreaded supplement(which can feel like failure,but if it works...).Good luck with this-it can be a real roller coaster.
 
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