Still trying to find answers

Makmomma2

New member
We had a follow up with GI doc yesterday. When I brought up the question of performing genetic testing she informed me that Morgan's sweat chloride results were 13 & 17 and "not even close".

I did show her Morgans fingernails as they grow down around her finger tips. The GI doc then mumbled something like "wonder if something else is going on with her, she did not have iron deficiency anemia when we tested her last time, but this appears to be clubbing". She suggested we bring this up with Morgan's pediatrician when we go on the 11th. The doc also said she was going to recheck her CRP as it was 10.5 last month but then decided it was probably due to a cold she had at the time of testing. I told the doc that Morgan had elevated temps on 4 separate occasions the past 2 months and cold like symptoms last month and again this month (moist coughing, runny nose, hoarse voice.)- she did not seem concerned about this saying "probably from daycare". Other kids at daycare had runny noses but no coughing or hoarseness.

On the plus side, Morgan weighed in at 18lbs, that moves her from .1% to 2.5% for her weight! We are told to continue 1 cap Miralax daily and have a follow up with GI in 2 months, no tests ordered.

Feeling a little frustrated, and not sure if I am making a mountain out of a molehill. Everyone says "she looks healthy, I am sure nothing is wrong." but I just cant stop questioning why she has the symptoms she does, I don't think its "normal" for a 19 month old to require adult dosage of medication daily to prevent constipation.

Any further advice would be greatly appreciated! I will be asking pediatrician about genetic testing and maybe fecal fat test as GI doc did not seem interested in further testing.
 

Aboveallislove

Super Moderator
What you are doing suggesting makes perfect sense. What about also having the ped do a throat culture to see f she has any of the typical cf bugs, like staph, which many with cf have from a very young age.
 

Makmomma2

New member
I will certainly put that on my list to ask for along with fecal fat and genetic testing I think. Do I need to ask for a specific type of genetic testing or is there a general one to cover all bases? When I was pregnant with my son they said we had a chance for downs and he does not physically appear to have downs but he does have bilateral Palmer creases (which I had to bring to docs attention at 3 yrs of age) when he was having speech delay and behavioral issues. Not sure if maybe there is a genetic issue going on with both and manifesting in each child in different ways. My wheels are spinning but I'm getting no where ?
 
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