Help needed- Originally posted in Family forum

Makmomma2

New member
I am new to this forum so I apologize in advance if I don't post this in the appropriate place. I am the mother of 2. My son Mikhail will be 5 in August and my daughter Morgan turned 1 in January.

I had a complicated pregnancy with my daughter, had bleeding several times (ultrasound techs thought my placenta was detaching, docs said venous lake and placenta previa) and she would not move off my left side, docs were concerned for her growth. Morgan was delivered via C-section and ended up being 5lbs 14oz at birth. She had a choking episode on her 2nd day of life where she turned blue and required vigorous stimulation to breath again and afterward she vomited up mucous, she had 2 more episodes of this over next 3 weeks, no one seemed concerned, maybe due to delivery via C-section? She also had RSV at 1 month of age and suffered respiratory symptoms for a month with that illness. She was also on medication for GERD until about 6 months of age. She has always been small, and has never been above the 5th percentile. Her family doctors had us go in every few days for the first month for weight checks then monthly for a while but stated they were not too concerned and happy that she was at least gaining weight.

Morgan has been suffering from some GI symptoms for the past 8 months or so. We had been telling her pediatrician about her constipation, protruding rectum and bright red blood when wiping. There are times when she will strain for days before passing very large hard stools. Their recommendation was to give her milk of magnesia with mineral oil and increase juices. We tried the medication and it helped a bit but she is unable to go without it. And occasionally she would have a large loose BM with a large amount of mucous present. She will not drink juice. After months of complaints about this issue and no further investigation by her family doc we switched practices. Our first visit with the new NP and we showed her a stool sample she immediately referred us to a pediatric GI specialist. We had our first appointment with the specialist on 6/30/14 and she immediately asked if we had her tested for CF. She ordered a sweat chloride test along with tests to check for Celiac, Inflammation, food allergies, CBC and Thyroid functions. Which we completed all the next day. She diagnosed Morgan with Failure to thrive, rectal prolapse and chronic constipation and said she has several deep anal fissures. She told us to stop her current bowel meds and put her on adult dosage of Miralax and ordered us to cut back on carbohydrates and fiber, increase fruits, & vegetables, and try to cut back on breast feeding. She is currently 18 months old, and 17lbs (less than 1 percentile) and she has decreased appetite but the bowel meds seem to be helping.

Her sweat chloride test came back negative, and the doctor seemed satisfied with the results of her other blood tests. Stating the only thing she could see is Morgan tested borderline for Hypothyroid and her C Reactive Protein level was 10.5, possibly from a virus (she had symptoms of moist cough and runny nose for 3 weeks before the test). I was relieved with the results but now I am still wondering what has been bothering my little girl. I did some research on the possibility of a false negative sweat chloride test and was surprised to find that it does happen somewhat frequently. And I am wondering your take on it, should I be pushing for genetic testing? I have no family history of CF. I just cant shake the feeling like we are over looking something. Am I being paranoid?
 
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