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Negative Blood Test Today

chrissid7

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chrissid7 Newbie
chrissid7
Posted

sorry for anyone who reads this twice but I just found this section and felt like this is where I should have posted I just pasted the original. Im sad but happy to see there are other with similar problems. I would like to know if there are any other Cystic Fibrosis kids on the diet as well.

Hi e1,

This is my first post here, but I have been reading for days. What an awsome group. Long (super long) story short after 2 years of pleading with pediatricians my 2 year old (now 8) was diagnosed with Cystic Fibrosis. She has been sick from day one with weight and lung issues. After the Cf dx we thought we were on the right path but we have struggled her whole life to keep her well. She still doesnt gain weight... she has been 44 lbs for 2 years and now her doc is looking at G-tube. She was diagnosed 2 years ago with epilepsy (told it was unrelated to CF) last year all of her molars came in with no enamel and spotted front teeth (also told not related to CF), she has had random knee pain all her life, random dry scaly patches on her elbows that mysteriously clear up on their own, always smelly gas. She never complains about her tummy but sometimes it is very hard. She also would not swallow the actual food pieces until she was 2 1/2 she would just suck the juice from her food and leave the rest between her gums and lips (like snuff or dip) until I cleaned it out. I suspect she has celiac disease but the blood test was negative today (done last week). I am going to go ahead with the diet but my issue is that I need her pulmonologist to really "get it". She said that the gastro she consulted about the results said "this child definitely does not have celiac disease and a biopsy is unnecessary". I have a hard time believing that she has the seizure,s failure to thrive, Dental deformities , sometimes pain in joints, and so much more and none of this stuff is related. I cant sleep, and Im a wreck. I would give anything just to have her just "BE WELL". We were on Iv meds for a total of 5 months last year (5 out of 10) I am going to go ahead with the diet and pray like heck! We need a friggin break for petes sake! Any suggestions or advice is greatly apprecited.

Thanks Chrissi

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wowzer Community Regular
wowzer
Posted

It sure must have been a shock to get the CF diagnosis. I remember growing up having a neighbor that had 2 children with it. I do know they don't absorb nutrients in food either. I have read bits and pieces about that disease over the years. I know they can do so much more for it now. I hope that you find some answers. Good Luck, Wendy

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