I posted on here a few months back, and we are no closer then than we are now, or so it seems. My ds is now 18 months and barely 21 pounds and eating between 2000-3000 calories per day. We just got finished with a 72 hour fecal fat study and a upper GI scope (nothing abnormal, bile samples and small intestine biopsies), and finally a genetic screening for CF. Of course he gets the rota virus while there and are stranded another 6 days. So at this point we are on iron(anemia), vitamin D(labs were low), zinc(GI doc suggestion), and lacctobacillus(GI doc). Before we even leave the hospital and the tests are back they start him on creon 10. He still has no resp. symptoms and is almost too healthy to have CF. I so badly want to find out why my child is a bottomless pit and well is just not healthy, but on the other hand I want a different answer. Months of looking into all kinds of GI issues and malabsorbtion possibilities and I keep running head on into CF. We have been on the enzymes for 3 days and we are having fewer, smaller bowel movements. I have prayed so many times for something to change and something to help him, but I really didn't want this to be it. I am sorry to rant but I needed to just say it. We have a follow up with our GI clinic on tuesday and a while yet on the genetic test( it has only been a week). Thanks for listening....if anyone has any suggestions or otherwise useful knowledge please do share....
All I can say is I hope you do get some answers one way or another. My son was diagnosed with CF at age 6.5 yrs and now almost 6 yrs later they are questioning his condition as his fecal sample came back to show it is producing enzymes and he never really had any chest infections. Then his DNA sample came back neg for nearly 400 CF gene's. So now we dont know if he has CF or not although he does have a mick-ey fitted to help keep the weight on. Right now I have another appointment for a sweat test on June 24/09 and awaiting his appointment for the nasel different testing that has to be in England. If they do discuss a feeding by PEG or Mick-ey or NG then do email me first and I will tell you the stuff the doctors dont tell you.
Sincere there are over 1500 cf mutations, it could be your initial testing missed the gene. Or your child has a yet to be discovered mutation. I do know of children who weren't diagnosed until nasal testing. Also, depending upon the mutations -- your child could be pancreatic sufficient and therefore not need enzymes. And even if your child is pancreatic insufficient, they can still produce SOME enzymes to aid in digestion.
Well we had our GI appt. today and the jury is still out. He is responding to the enzymes. He gained 1 pound and 5 oz. in two weeks which is huge!!!! He is finally on the growth chart!!! The genetic test is still out and his fecal fat study showed a degree of malabsorbtion, but they have to recalculate the results because they realized it was not based on his grams of fat ingested but the basic 100 g (he is a small boy so they think the results will be higher once they recalculate). They bile sample is also still pending. I am just so happy that the poopy diapers are now under control. we are still in the 2-4 BM a day , but this is so much better than the 6-12 BM we have had since birth. 18 months of that many icky diapers just gets to a girl, lol. Thanks you so much for listening to my frustration. We are still in the dark as far as a diagnosis but at least he is gaining weight. If anyone has any enzyme taking tips for a 18 month old..please share the applesauce thing is starting to get old and he is not all that interested in being fed even a spoonful be anyone else. He has been feeding himself for the last 7 months and has no intentions of changing. thanks!!!
Thank God for the weight gain. Take it day by day. And remember to look after yourself's too. No tips on the enzymes as Oisin was 7 by the time he was diagnosed with CF so he just swallowed his tabs anyway.
DS hated baby food applesauce. Not sure if it was a texture thing or what, so we used babyfood bananas for the most part. Plus they were stickier, so the enzymes didn't roll off. He also didn't seem to mind babyfood pears or peaches. You should be using something acidic, like fruit and not dairy based for the enzymes, but use whatever she likes. I've used chocolate syrup and jam/jelly in a pinch. Oh, and ketchup, too (he loves ketchup on everything).
I'd sprinkle the enzyme on a small baby spoon, shove the spoon, remove and QUICKLY shove the bottle in.
We have moved on to peaches and roasted pears smashed up, and with the swoop and swallow method have been having some luck...But now we have new symptoms hypertension and some swelling. They checked his liver and kidney panel and his function looked good, but his total protein was low even though his prealbumin was 24 (the highest it has ever been). They are sending us to a nephrologist to rule anything out, but do not think that it is likely yo be kidney disease. Can high blood pressure be a CF complication?
Hi there, sorry to hear you are having to go through such a tough time getting answers. Hopefully the genetic testing will put some of your uncertainty to rest. I have an 18 month old daughter with CF. She is 24lbs and the doctors say her weight and lung health are excellent. Her CF doctor told me that all of the supplements I give her are probably helping. I wont ramble on with all that I give her unless you are interested in knowing. Let me know and I will be glad to share. Everyone is different so parents who dont use supplements may have kids who are doing just as well as mine. I just know she is healthier because of them.
Hello Taylor, yes it is the waiting that drives us mad but what can you do. So far oisin is doing well but has lost weight. without the creon which he came of in december after a fecal study showed he is producing enzymes. The doc's are now saying that just because his fecal study showed that he is producing enzymes it does not mean that he is producing enough and will be going back on them on Tue after he meets the team. What can you do. Good luck with your little one,
Well we got back our genetic test and it was negative!!!! Which was both a deep sigh of relief and panic that I have no idea what is wrong with my little man. They have uped the creon and are trying to fine tune it so that we can get rid of the break through loose stools. They are still sticking with malabsorbtion being a major problem but says he doesn't fit any other symptom list besides CF, so they are really not sure what to check next. His pancreatic function is pretty low. We did however get a few good blood tests....for the first time his pre-albumin is actually with in normal...his sodium bicarb was back to normal. Please keep us in your thoughts and prayers as we try to find some answers.
if anyone has any great ideas or possibilities please put them out here.....
Well that is a relief Im sure! So glad you got a negative on the CF. There are many supplements that can aid in digestion. There are enzymes to help the stomach break down protiens as well as probiotics to help promote the good bacteria in the intesinal tract. That alone could improve the loose stools. I would take him to a certified Naturopathic doctor if I were you. That made such a difference for my daughter. Of COURSE stick with the medical side as well, but don be afraid to search other avenues. God Bless!
DElighted about the DnA but would not jump for joy yet. They are saying they have not found oisin dna but they only tested about the first 400 or so and there is 1400 cf genes identified. What they are saying is " its not that he hasn't got cf it's just that we haven't found his gene" Oisin's biggest problem is poor weight control he simply cannot keep the weight on without a back up feed from his tentrini at night. I hope this is not the case with you and that things will settle down soon and you can go on home and be a normal family again, but it is worth noting that if they only tested the first 400 or so cf genes then it is still possible he has cf.
I guess if they didn't do an amplified genetic test for the over 1500 CF mutations, I too wouldn't be ruling out CF either. Hopefully your doctors will continue to treat the symptoms. Also, DS symptoms are primarily digestive in nature as well -- as are a LOT of people wcf. He's pancreatic insufficient, has some sinus issues...
We are huge health nuts....he takes his probiotics everyday and we make our own kefir and yogurt. The crazy high calorie diet was at first such an effort, it seemed very wrong, but we are now getting into a groove. We have an icky cold thing right now, but i am sure he will be back to himself soon. I 'm going to check on which test he had done. I am so glad i have this board to bounce things off of.