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My son has alactasia

Posted In: Medical Stories 2 Replies
  • Posted By: kierki
  • March 3, 2008
  • 04:34 AM

My son, now nine, was diagnosed with alactasia when he was five years old. When he was born, he had projectile vommiting, severe acidic bowels, and rashes. He was always hungry and nursing all day long. I finally went to my pediatrician and suggested priscribing a formula that I was on as an infant, Progestamil. The formula seemed to do the trick, although the price of it was outrageous. At that time we were referred to a GI specialist after his first birthday, because of the concern of changing the formula to cow's milk. We visited the specialist, and he suggested weaning him off the formula and gradually introducing him to cow's milk. He diagnosed him with Lactose Intolerance. So, we tried, and tried, and tried again and eventually the GI specialist said "it might just take him longer than others, lets wait until he is two to introduce cow's milk again." So we did, and when he turned two we went back, and it was the same. The doctor said that he wanted to preform tests to confirm that it was LI. A breath-hydrogen test was done, a sweat-test was done, an allergy test was done, an immune deficency test was done, and finally an endoscopy/biopsy was done. Kristian was now almost five years old. He was in the 10th percentile for height and weight. He was in and out of hospitals because of his lack of ability to fight off infection.

After the endoscopy/biopsy was done, the doctor came back and said "he has LI and we will just keep him on the formula until he grows out of it." By this time I was furious. He was not eating like a normal child and he looked like a sick little boy, he only weighed less than 40 pounds. My husband and I went searching for a second opinion. We found a great doctor. We walked in and I showed him my son's records from the past five years. In less than five minutes he looked at me and asked "has anyone ever mentioned that your son has 'Alactasia' to you?" I said no. He then shows me that on the biopsy report Kristian's lactase level was 0. He said if he was LI than their would be a number there, but there wasn't. He placed Kristian on a high fiber diet, took him off of the formula, and started him on 2 Pediasure's a day supplemented with Rice Dream. After the first week on the new diet, Kristian was feeling and looking much better. He was now gaining weight, and he wasn't bloated anymore.

I thank God that we found this doctor, I feel that he has saved my son's life. Kristian is now a happy nine year old. He is still under-weight, but it has been 3 years since he was last hospitlized. I hope this information helps someone else.

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  • Hi,Thank you for this post. My son in 14 months old and he also has the 0 lactase.He is now under the care of a Gi and Immunologist. He is about 14 lb and way low on the chart.I would like to know if possible the name of the Dr. My son, now nine, was diagnosed with alactasia when he was five years old. When he was born, he had projectile vommiting, severe acidic bowels, and rashes. He was always hungry and nursing all day long. I finally went to my pediatrician and suggested priscribing a formula that I was on as an infant, Progestamil. The formula seemed to do the trick, although the price of it was outrageous. At that time we were referred to a GI specialist after his first birthday, because of the concern of changing the formula to cow's milk. We visited the specialist, and he suggested weaning him off the formula and gradually introducing him to cow's milk. He diagnosed him with Lactose Intolerance. So, we tried, and tried, and tried again and eventually the GI specialist said "it might just take him longer than others, lets wait until he is two to introduce cow's milk again." So we did, and when he turned two we went back, and it was the same. The doctor said that he wanted to preform tests to confirm that it was LI. A breath-hydrogen test was done, a sweat-test was done, an allergy test was done, an immune deficency test was done, and finally an endoscopy/biopsy was done. Kristian was now almost five years old. He was in the 10th percentile for height and weight. He was in and out of hospitals because of his lack of ability to fight off infection. After the endoscopy/biopsy was done, the doctor came back and said "he has LI and we will just keep him on the formula until he grows out of it." By this time I was furious. He was not eating like a normal child and he looked like a sick little boy, he only weighed less than 40 pounds. My husband and I went searching for a second opinion. We found a great doctor. We walked in and I showed him my son's records from the past five years. In less than five minutes he looked at me and asked "has anyone ever mentioned that your son has 'Alactasia' to you?" I said no. He then shows me that on the biopsy report Kristian's lactase level was 0. He said if he was LI than their would be a number there, but there wasn't. He placed Kristian on a high fiber diet, took him off of the formula, and started him on 2 Pediasure's a day supplemented with Rice Dream. After the first week on the new diet, Kristian was feeling and looking much better. He was now gaining weight, and he wasn't bloated anymore. I thank God that we found this doctor, I feel that he has saved my son's life. Kristian is now a happy nine year old. He is still under-weight, but it has been 3 years since he was last hospitlized. I hope this information helps someone else.
    Anonymous 42789 Replies
    • November 15, 2009
    • 02:32 PM
    • 0
    Flag this Response
  • Hi,Thank you for this post. How can I contact your doctor?My son has had diarrhea since birth, Pediatrician sent us to a GI that took 10 min and sent us home. We went for another opinion and all tests showed up normal except for the 0 lactase enzyme. And low on all other enzymes. He has an inflammation with an unknown root cause. The immunity was checked and reading was low but now with Iron supplements and vitamins it is inching towards normal.Every elemental formula we try seems to increase the vomiting and diarrhea. How can I contact your doctor? I would like to hear from parents that had similar issues.can you post the details of the diet your son was put on.I would like to discuss that with my Gi.My son, now nine, was diagnosed with alactasia when he was five years old. When he was born, he had projectile vommiting, severe acidic bowels, and rashes. He was always hungry and nursing all day long. I finally went to my pediatrician and suggested priscribing a formula that I was on as an infant, Progestamil. The formula seemed to do the trick, although the price of it was outrageous. At that time we were referred to a GI specialist after his first birthday, because of the concern of changing the formula to cow's milk. We visited the specialist, and he suggested weaning him off the formula and gradually introducing him to cow's milk. He diagnosed him with Lactose Intolerance. So, we tried, and tried, and tried again and eventually the GI specialist said "it might just take him longer than others, lets wait until he is two to introduce cow's milk again." So we did, and when he turned two we went back, and it was the same. The doctor said that he wanted to preform tests to confirm that it was LI. A breath-hydrogen test was done, a sweat-test was done, an allergy test was done, an immune deficency test was done, and finally an endoscopy/biopsy was done. Kristian was now almost five years old. He was in the 10th percentile for height and weight. He was in and out of hospitals because of his lack of ability to fight off infection. After the endoscopy/biopsy was done, the doctor came back and said "he has LI and we will just keep him on the formula until he grows out of it." By this time I was furious. He was not eating like a normal child and he looked like a sick little boy, he only weighed less than 40 pounds. My husband and I went searching for a second opinion. We found a great doctor. We walked in and I showed him my son's records from the past five years. In less than five minutes he looked at me and asked "has anyone ever mentioned that your son has 'Alactasia' to you?" I said no. He then shows me that on the biopsy report Kristian's lactase level was 0. He said if he was LI than their would be a number there, but there wasn't. He placed Kristian on a high fiber diet, took him off of the formula, and started him on 2 Pediasure's a day supplemented with Rice Dream. After the first week on the new diet, Kristian was feeling and looking much better. He was now gaining weight, and he wasn't bloated anymore. I thank God that we found this doctor, I feel that he has saved my son's life. Kristian is now a happy nine year old. He is still under-weight, but it has been 3 years since he was last hospitlized. I hope this information helps someone else.
    Anonymous 42789 Replies
    • November 15, 2009
    • 02:51 PM
    • 0
    Flag this Response
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