Hello,
I am new to this site and my son is currently in the process of being tested for CF. Here is a brief history as we have a long story!
I breastfed until 17 months, at 18 months my son caught Rotavirus. (we were living overseas and they did not vaccinate) After Rotavirus, we realized his diapers were still very mushy, smelly, and frequent. He was always a great eater and always hungry. The more he ate the more frequent his stools were, up to 6+ a day, but never formed. We watched closely and tried to link it to a food he was eating. We had him allergy tested (skin and RAST) with all negative results. At 2.5 we demanded that some tests be done as this just didn't seem normal! He had a lot of blood work done and some stool samples for parasites, viruses, and blood. All samples were negative however his blood showed that his ferritin was 3 and his serum was 5, for the six months prior he had been taking a multivitamin with iron. He begin supplements (5ml of ferrous sulfate daily) and we had to go through the food diary with a nutritionist. They agreed that it was not diet related.
Fast forward, we moved back to the USA in late August and had them do more blood work. His ferritin was now only at 5. They sent us to a GI to figure out why he was not absorbing the iron and why he still had not had a formed stool but rather these large, mushy, frequent stools.
He has been blood tested for Celiac at least 4 times. THe GI did some x-rays, more stool samples, and full scopes with biopsies for fructose intolerance, lactose intolerance, and celiac. THe results showed that he had gastritis of the stomach and was lactose intolerant. Everything else was "normal" looking. So he started zantac and then later switched to prevacid. They added 700mg calcium and D3, and we continued with the iron and multivitamin. The GI said we needed to see a Hematologist. The Hematologist has again done many blood tests and some stool samples. He had a sweat chloride test that was negative, although I was not given an actual number. His vitamin D is also low. Two weeks ago the GI said she wanted to do the CF genetic blood test. He did have a newborn screen at 9 months which was negative. The GI also "saw" one of his diapers while we were in the office this last time. (he is not potty trained yet due to all of the messy, loose stools) She sent it away for tests but did not say what. She had mentioned PI tests, so I assume from reading here the elastase.
He has not had any respiratory issues. He seems to have ups and downs as far as complaining about pain around his belly button and how much he wants to eat. His appetite seems to be getting worse, but I have mixed feelings as if this is from all of the extra meds/supplements he is taking? His stools are always very large, mushy (like an oatmeal consistency) and wet or watery. Other times they have a gravel/sand consistency
Does he sound PI? Anyone have experience with low ferritin that is not able to get out of the single digits? He will be 3.5yr next month and weighs 31 lbs, As a breastfed baby he was always in the 90% but as dropped down to the 25% now.
I am stil waiting for the genetic test results. Should I push for the full test or does this not sound like PI in CF? Any other ideas? This April it will be TWO years since we started trying to figure him out! It is exhausting for all of us and we are just so ready to help him!
Thank You!
I am new to this site and my son is currently in the process of being tested for CF. Here is a brief history as we have a long story!
I breastfed until 17 months, at 18 months my son caught Rotavirus. (we were living overseas and they did not vaccinate) After Rotavirus, we realized his diapers were still very mushy, smelly, and frequent. He was always a great eater and always hungry. The more he ate the more frequent his stools were, up to 6+ a day, but never formed. We watched closely and tried to link it to a food he was eating. We had him allergy tested (skin and RAST) with all negative results. At 2.5 we demanded that some tests be done as this just didn't seem normal! He had a lot of blood work done and some stool samples for parasites, viruses, and blood. All samples were negative however his blood showed that his ferritin was 3 and his serum was 5, for the six months prior he had been taking a multivitamin with iron. He begin supplements (5ml of ferrous sulfate daily) and we had to go through the food diary with a nutritionist. They agreed that it was not diet related.
Fast forward, we moved back to the USA in late August and had them do more blood work. His ferritin was now only at 5. They sent us to a GI to figure out why he was not absorbing the iron and why he still had not had a formed stool but rather these large, mushy, frequent stools.
He has been blood tested for Celiac at least 4 times. THe GI did some x-rays, more stool samples, and full scopes with biopsies for fructose intolerance, lactose intolerance, and celiac. THe results showed that he had gastritis of the stomach and was lactose intolerant. Everything else was "normal" looking. So he started zantac and then later switched to prevacid. They added 700mg calcium and D3, and we continued with the iron and multivitamin. The GI said we needed to see a Hematologist. The Hematologist has again done many blood tests and some stool samples. He had a sweat chloride test that was negative, although I was not given an actual number. His vitamin D is also low. Two weeks ago the GI said she wanted to do the CF genetic blood test. He did have a newborn screen at 9 months which was negative. The GI also "saw" one of his diapers while we were in the office this last time. (he is not potty trained yet due to all of the messy, loose stools) She sent it away for tests but did not say what. She had mentioned PI tests, so I assume from reading here the elastase.
He has not had any respiratory issues. He seems to have ups and downs as far as complaining about pain around his belly button and how much he wants to eat. His appetite seems to be getting worse, but I have mixed feelings as if this is from all of the extra meds/supplements he is taking? His stools are always very large, mushy (like an oatmeal consistency) and wet or watery. Other times they have a gravel/sand consistency
Does he sound PI? Anyone have experience with low ferritin that is not able to get out of the single digits? He will be 3.5yr next month and weighs 31 lbs, As a breastfed baby he was always in the 90% but as dropped down to the 25% now.
I am stil waiting for the genetic test results. Should I push for the full test or does this not sound like PI in CF? Any other ideas? This April it will be TWO years since we started trying to figure him out! It is exhausting for all of us and we are just so ready to help him!
Thank You!