Hi there – I am posting in this forum because this is what he is being tested for. He has NOT been diagnosed as of yet but would like to get some feedback from others that are familiar with Crohns. I am in no way looking for a diagnosis from anyone…just a very concerned mama looking for feedback.
As an aside – my son would not eat solids his first year of life – they kept saying it was behavioral but as a mom I knew something was wrong. Finally a friend of mine is an OT said it isn’t behavioral. He was constantly getting pneumonia and lung infections. Long story short we were sent to Hopkins and after several tests and meetings with a Gastrenologist, pulmonary, and otanlaronologist they did an endoscopy and realized he had a type 2 laryngeal cleft meaning he basically had an opening between his esophagus and his larynx. Very rare. It was causing him to aspirate and get infections..he underwent surgery and they repaired the cleft. For the first time in his life at almost age 4 we saw him eat a waffle and it was one of the best days of my life.
Anyways, flash forward – even still he is constantly getting sick – his stools are almost always loose fluffy pieces, sometimes watery, every once in a while he will have a formed stool but always still accompanied with looser fluffy pieces all around it and particles of food. It is also always a light almost yellowish tan. I have 2 other children and their stools never look like this. He also has always had BAD gas pain….literally nothing I ever have seen before…he passes gas over 100 times a day…and I love my little guy but they could clear a room in a matter of seconds…it’s an ongoing joke with his friends and our family…we have never smelled or heard anything like it…Ive mentioned it to his doctors several times and they chalked it up to lactose so I cut him from dairy for several months to no avail. Then they suggested he get tested for Cystic Fibrosis because he also has asthma so we did the sweat test and the conductivity level was 39. They ruled it as a negative. This was back in 2015 – shortly after my brother was diagnosed with cancer, my mom passed away very suddenly, my dad fell from a tree and broke his back and neck, my FIL passed away, and I was diagnosed with HELLP syndrome with my youngest – all within 6 months – so needless to say I was emotionally wiped out and kind of put everything on the back burner as I helped care for my brother and dad. My little guy continued with the loose stools and also started getting mouth ulcers A LOT..several a month and I feel like he rarely doesn’t have one in his mouth…I began to ask my pediatrician questions again…
He is also extremely skinny and the smallest in his class – 2 years ago it was he and 2 others that were the smallest but as time went on the other 2 grew and left my poor little guy as the smallest by several inches and pounds (he is one of the oldest in his class too)..so when we went for his 9 yr check up his doctor noticed he hadn’t grown in a year and half so then he finally started to get concerned…we started coming every 3 months for a check and finally when we went for his 10 year check he did grow but still is around 2% on the charts for height and weight. My husband is 5’9″ and I am 5’4″ – my daughter is 8 and has almost 20 lbs on him – she and my other daughter are in the 50 percentile for height and weight…I mentioned to the doc that he was still having these issues with his stomach…severe pain, severe gas, loose stools, he also chokes constantly when he eats and he said it is because his stomach always feels upset, and he has been getting mouth ulcers constantly..he finally decided to send us to Hopkins again. He wakes up frequently in the middle of the night from abdominal pain – I get up with him and we do stretches and gas exercises to help until finally he goes back to bed. Also, lately I have noticed he is just exhausted…he always says his legs can barely carry him and he needs to sit down. His other issue was he was having accidents at school (pre-pandemic) and would spend his lunch in the bathroom…He does have accidents frequently where he doesn’t make it to the bathroom in time and/or when he passes gas mucous stool comes out (this happens quite often)..So we met with the doctor a few weeks ago – she wanted to do blood tests, stool tests, X-rays, and colonoscopy and endoscopy. So we just got results from blood – she said it all looked normal – when I checked the only things that were elevated were BUN/Creatine Ratio was 35, and his A/G Ratio was really high at 2.6..his white blood cells are always just enough to be in the red flag low but not enough for the doctors to make a big deal about it, and I noticed he had a 1% for Immature granulocytes. CRP was <1, Sed rate was 3, IGA, Serum was 123, TSH was 2.850, Transglut was <2, Giardia is Negative, CDiff Negative, and Occult Blood Negative. Calprotectin was 40, and stool culture is clear. Negative for Celiac twice. I am shocked because if you could see the kind pain he is in it is horrible – he will just keel over and cry and say he can’t breath the pain is so bad. He said it feels like something is inside of him trying to escape when the asked what the pain feels like - he said that he has gotten so used to it because he feels pain more often then not which is crushing to hear. As I mentioned above he constantly has these mouth ulcers (I switched his toothpaste to SLS free a year ago to no avail - unjust the past 3 weeks he has had 3) and also gets random bumps around his mouth, and he also gets sores on and his nose, and on his legs (Ive always thought the ones on legs are bug bites as we live on the water and have many mosquitos but regardless they take forever to heal and start pussing). The latest things I have noticed is twice in the past 2 months his eyelid has gotten so red and swollen it was almost shut. He is constantly messing with his eyes saying they burn. And he has been complaining that his fingers hurt when he bends them.
So this is our story – I am so grateful for anyone reading this and giving feedback. I just feel frustrated. He is the sweetest, kindest little guy and I love him so much and want him to just feel good. Based on his normal blood work and stool samples so far it makes me question whether I should put him through being put under for a colonoscopy and endoscopy. His doctor said that she thinks it is absolutely necessary because she is very convinced something is wrong - she said she has many patients that have normal labs and stool tests and the scopes tell a totally different story. Part of me asks myself are we reaching for something that isn’t there but then I see him in so much pain and it breaks my heart. Thank you again so much for reading.
As an aside – my son would not eat solids his first year of life – they kept saying it was behavioral but as a mom I knew something was wrong. Finally a friend of mine is an OT said it isn’t behavioral. He was constantly getting pneumonia and lung infections. Long story short we were sent to Hopkins and after several tests and meetings with a Gastrenologist, pulmonary, and otanlaronologist they did an endoscopy and realized he had a type 2 laryngeal cleft meaning he basically had an opening between his esophagus and his larynx. Very rare. It was causing him to aspirate and get infections..he underwent surgery and they repaired the cleft. For the first time in his life at almost age 4 we saw him eat a waffle and it was one of the best days of my life.
Anyways, flash forward – even still he is constantly getting sick – his stools are almost always loose fluffy pieces, sometimes watery, every once in a while he will have a formed stool but always still accompanied with looser fluffy pieces all around it and particles of food. It is also always a light almost yellowish tan. I have 2 other children and their stools never look like this. He also has always had BAD gas pain….literally nothing I ever have seen before…he passes gas over 100 times a day…and I love my little guy but they could clear a room in a matter of seconds…it’s an ongoing joke with his friends and our family…we have never smelled or heard anything like it…Ive mentioned it to his doctors several times and they chalked it up to lactose so I cut him from dairy for several months to no avail. Then they suggested he get tested for Cystic Fibrosis because he also has asthma so we did the sweat test and the conductivity level was 39. They ruled it as a negative. This was back in 2015 – shortly after my brother was diagnosed with cancer, my mom passed away very suddenly, my dad fell from a tree and broke his back and neck, my FIL passed away, and I was diagnosed with HELLP syndrome with my youngest – all within 6 months – so needless to say I was emotionally wiped out and kind of put everything on the back burner as I helped care for my brother and dad. My little guy continued with the loose stools and also started getting mouth ulcers A LOT..several a month and I feel like he rarely doesn’t have one in his mouth…I began to ask my pediatrician questions again…
He is also extremely skinny and the smallest in his class – 2 years ago it was he and 2 others that were the smallest but as time went on the other 2 grew and left my poor little guy as the smallest by several inches and pounds (he is one of the oldest in his class too)..so when we went for his 9 yr check up his doctor noticed he hadn’t grown in a year and half so then he finally started to get concerned…we started coming every 3 months for a check and finally when we went for his 10 year check he did grow but still is around 2% on the charts for height and weight. My husband is 5’9″ and I am 5’4″ – my daughter is 8 and has almost 20 lbs on him – she and my other daughter are in the 50 percentile for height and weight…I mentioned to the doc that he was still having these issues with his stomach…severe pain, severe gas, loose stools, he also chokes constantly when he eats and he said it is because his stomach always feels upset, and he has been getting mouth ulcers constantly..he finally decided to send us to Hopkins again. He wakes up frequently in the middle of the night from abdominal pain – I get up with him and we do stretches and gas exercises to help until finally he goes back to bed. Also, lately I have noticed he is just exhausted…he always says his legs can barely carry him and he needs to sit down. His other issue was he was having accidents at school (pre-pandemic) and would spend his lunch in the bathroom…He does have accidents frequently where he doesn’t make it to the bathroom in time and/or when he passes gas mucous stool comes out (this happens quite often)..So we met with the doctor a few weeks ago – she wanted to do blood tests, stool tests, X-rays, and colonoscopy and endoscopy. So we just got results from blood – she said it all looked normal – when I checked the only things that were elevated were BUN/Creatine Ratio was 35, and his A/G Ratio was really high at 2.6..his white blood cells are always just enough to be in the red flag low but not enough for the doctors to make a big deal about it, and I noticed he had a 1% for Immature granulocytes. CRP was <1, Sed rate was 3, IGA, Serum was 123, TSH was 2.850, Transglut was <2, Giardia is Negative, CDiff Negative, and Occult Blood Negative. Calprotectin was 40, and stool culture is clear. Negative for Celiac twice. I am shocked because if you could see the kind pain he is in it is horrible – he will just keel over and cry and say he can’t breath the pain is so bad. He said it feels like something is inside of him trying to escape when the asked what the pain feels like - he said that he has gotten so used to it because he feels pain more often then not which is crushing to hear. As I mentioned above he constantly has these mouth ulcers (I switched his toothpaste to SLS free a year ago to no avail - unjust the past 3 weeks he has had 3) and also gets random bumps around his mouth, and he also gets sores on and his nose, and on his legs (Ive always thought the ones on legs are bug bites as we live on the water and have many mosquitos but regardless they take forever to heal and start pussing). The latest things I have noticed is twice in the past 2 months his eyelid has gotten so red and swollen it was almost shut. He is constantly messing with his eyes saying they burn. And he has been complaining that his fingers hurt when he bends them.
So this is our story – I am so grateful for anyone reading this and giving feedback. I just feel frustrated. He is the sweetest, kindest little guy and I love him so much and want him to just feel good. Based on his normal blood work and stool samples so far it makes me question whether I should put him through being put under for a colonoscopy and endoscopy. His doctor said that she thinks it is absolutely necessary because she is very convinced something is wrong - she said she has many patients that have normal labs and stool tests and the scopes tell a totally different story. Part of me asks myself are we reaching for something that isn’t there but then I see him in so much pain and it breaks my heart. Thank you again so much for reading.
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