- Joined
- Feb 17, 2013
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- 16
Hi everyone! I am a parent of a 6 year old with Crohn's Disease. My son's story has some "mysteries", and I am looking for advice/help/support. Please read my story (I posted it on Friday). It's a little long, but tell me what your thoughts are. Thanks, and I'm happy to be a part of the forum!
Parent of child with CD- An interesting Case
Hi! My 6 year old son was diagnosed with Crohn's Disease when he was 2. His case is somewhat of a mystery. I am excited to share his story and welcome any thoughts or experiences anyone may have. I will be sharing both the quick and detailed version of his case. The Quick Story- For about 4 years my son was in a near constant state of inflammation in his intestines. Despite being on strong medications, his symptoms and poor labs pursued. Then, on a hunch and by our own decision, my husband and I started to give him Pepcid (famotidine). We gave it for its H2 antagonist (antihistamine) property. Within 2 weeks my son went into remission for the FIRST TIME ever. He has remained in remission for many months. It was as if a switch had been flipped. A detailed account of his medical history follows.
Pre-remission, my son had diarrhea 4-6 times daily, on average, for most of his life. There was often visible blood. His height and weight have been stunted. He has been on all of the standard drugs including: Pentasa, Prednisolone (for 9 months), Imuran (special blood tests showed that his body was not absorbing this at all), Remicade (ANAPHYLACTIC reaction on third infusion), and Humira which he's been on for about two years till present. The meds have done nothing to improve his symptoms or labs. Bloodwork has always shown significant inflammation. Colonoscopies done a year apart showed no improvement. There were numerous granulomas found upon biopsy.
In April 2012 my son got an NG tube. The doctor suggested trying to add Methotrexate along with the Humira, but we chose the tube. My son began receiving enteral nutrition. He slowly began to gain weight. However, after 3 months his symptoms were bad and his labs were the worst ever. His labs included a Sed Rate of 30 and a CRP of 4.1.
In July 2012 there was a huge turn of events. Without consulting the GI doctor (we checked with a pediatrician to make sure it would be safe), my husband and I began giving our son 10 mg famotidine (Pepcid) daily. This is why- When our daughter was 8 (she is now 14), she had unexplained hives all over her body everyday for an entire year! She was given a long list of antihistamines without any improvement. Finally, an allergist had us give her Pepcid for its H2 antihistamine property. Amazingly, it worked! She took it for a while and never had hives again. Although she does not have IBD, we thought both children may share some unknown genetic autoimmune condition.
Then came the stunning results. Within 2 weeks of taking Pepcid, my son began to show significant improvement in his symptoms for the first time in his entire life! (Remember, 4 years of strong IBD drugs failed consistently). His weight gain and height (especially with the enteral nutrition calories) increased dramatically. He gained 10 pounds and 2.7 inches in height in about 6 months! Labs confirmed- remission. His sed rate dropped down to 1 (it was previously 30). His CRP dropped to 0.6 (it had been 4.1). For reference, normal sed rates are 0-20. Normal CRP is 0-0.9. Interestingly, his Vitamin D level was a little low, which seems common for Myocystic Enterocolitis I have read about. We also added an H1 antihistamine, Claritin. The NG tube came out around Christmas.
At this point, we are faced with many questions. Does our son really have CD, or does he have CD and another condition? Since he failed for 4 years on IBD drugs, but reacted immediately and impressively to an antihistamine that works in the intestines, perhaps he has a Mast Cell Disorder. I have researched and found that an excess of Mast Cells or histamine can cause severe inflammation in the intestines, as well as diarrhea. Also, if one's DAO enzyme level is low, it can cause a build up of intestinal histamine. On this forum, I read about Myocystic Enterocolitis for the first time. I have been looking into this as well. It is especially intriguing as the treatment for ME is to give H1 and H2 antihistamines (the only drugs my son responded to).
Our plan is to meet with the allergist that prescribed the Pepcid to our daughter for her hives. Hopefully, he will agree that my son's case warrants further exploration. I'd like my son's biopsies (from previous colonoscopies) to be re-evaluated. He's had 2 separate evaluations and bloodwork by 2 immunologists and an allergist a few years ago. While everything came back normal, perhaps now they have something specific to look for. Our pediatrician and my GP support our theory, which is encouraging. I am looking forward to chatting with you! Thanks for reading! Who knows, maybe Pepcid will help others suffering with CD!
Parent of child with CD- An interesting Case
Hi! My 6 year old son was diagnosed with Crohn's Disease when he was 2. His case is somewhat of a mystery. I am excited to share his story and welcome any thoughts or experiences anyone may have. I will be sharing both the quick and detailed version of his case. The Quick Story- For about 4 years my son was in a near constant state of inflammation in his intestines. Despite being on strong medications, his symptoms and poor labs pursued. Then, on a hunch and by our own decision, my husband and I started to give him Pepcid (famotidine). We gave it for its H2 antagonist (antihistamine) property. Within 2 weeks my son went into remission for the FIRST TIME ever. He has remained in remission for many months. It was as if a switch had been flipped. A detailed account of his medical history follows.
Pre-remission, my son had diarrhea 4-6 times daily, on average, for most of his life. There was often visible blood. His height and weight have been stunted. He has been on all of the standard drugs including: Pentasa, Prednisolone (for 9 months), Imuran (special blood tests showed that his body was not absorbing this at all), Remicade (ANAPHYLACTIC reaction on third infusion), and Humira which he's been on for about two years till present. The meds have done nothing to improve his symptoms or labs. Bloodwork has always shown significant inflammation. Colonoscopies done a year apart showed no improvement. There were numerous granulomas found upon biopsy.
In April 2012 my son got an NG tube. The doctor suggested trying to add Methotrexate along with the Humira, but we chose the tube. My son began receiving enteral nutrition. He slowly began to gain weight. However, after 3 months his symptoms were bad and his labs were the worst ever. His labs included a Sed Rate of 30 and a CRP of 4.1.
In July 2012 there was a huge turn of events. Without consulting the GI doctor (we checked with a pediatrician to make sure it would be safe), my husband and I began giving our son 10 mg famotidine (Pepcid) daily. This is why- When our daughter was 8 (she is now 14), she had unexplained hives all over her body everyday for an entire year! She was given a long list of antihistamines without any improvement. Finally, an allergist had us give her Pepcid for its H2 antihistamine property. Amazingly, it worked! She took it for a while and never had hives again. Although she does not have IBD, we thought both children may share some unknown genetic autoimmune condition.
Then came the stunning results. Within 2 weeks of taking Pepcid, my son began to show significant improvement in his symptoms for the first time in his entire life! (Remember, 4 years of strong IBD drugs failed consistently). His weight gain and height (especially with the enteral nutrition calories) increased dramatically. He gained 10 pounds and 2.7 inches in height in about 6 months! Labs confirmed- remission. His sed rate dropped down to 1 (it was previously 30). His CRP dropped to 0.6 (it had been 4.1). For reference, normal sed rates are 0-20. Normal CRP is 0-0.9. Interestingly, his Vitamin D level was a little low, which seems common for Myocystic Enterocolitis I have read about. We also added an H1 antihistamine, Claritin. The NG tube came out around Christmas.
At this point, we are faced with many questions. Does our son really have CD, or does he have CD and another condition? Since he failed for 4 years on IBD drugs, but reacted immediately and impressively to an antihistamine that works in the intestines, perhaps he has a Mast Cell Disorder. I have researched and found that an excess of Mast Cells or histamine can cause severe inflammation in the intestines, as well as diarrhea. Also, if one's DAO enzyme level is low, it can cause a build up of intestinal histamine. On this forum, I read about Myocystic Enterocolitis for the first time. I have been looking into this as well. It is especially intriguing as the treatment for ME is to give H1 and H2 antihistamines (the only drugs my son responded to).
Our plan is to meet with the allergist that prescribed the Pepcid to our daughter for her hives. Hopefully, he will agree that my son's case warrants further exploration. I'd like my son's biopsies (from previous colonoscopies) to be re-evaluated. He's had 2 separate evaluations and bloodwork by 2 immunologists and an allergist a few years ago. While everything came back normal, perhaps now they have something specific to look for. Our pediatrician and my GP support our theory, which is encouraging. I am looking forward to chatting with you! Thanks for reading! Who knows, maybe Pepcid will help others suffering with CD!
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