- Joined
- Jan 24, 2013
- Messages
- 67
My son John was diagnosed with Crohn's at age 6 in August 2010 at a German hospital near Ramstein AFB.
As a baby, John was a big eater--we suspect this was the first clue to his condition. At only about 8 1/2 pounds, we were surprised at how much he would nurse. As the first of FOUR we didn't realize that feeding all night long was a little out of the norm. I mean, and this is before I decided to stay home full time, at six months John would got to childcare with 5 nine oz bottles. That's 45oz of milk! On a typical day he'd consume 27oz at 6 months and the doctors felt that he was merely a hungry baby. Hungry is good, right?
Well he got massive. Totally off the charts by a year old. Then after my wife stopped nursing--BAM--ear infections! They were non-stop for months. By month four the doctors decided on tubes (now keep in mind our German peds. ordered tubes for our 2nd child after the second infection and they treated the infections with a nasal spray irrigation of the ear...wow...at home). John was on antibiotics for weeks straight and at least once a month for 4 months.
He got tubes and things improved. He was always sort of wild, like he was pre-occupying himself. Didn't potty train until almost three and his stool was in large volume, smelly, and soft. The doctors thought he was fine because he was big.
We moved from VA to OH in '07. John was 3 and rambunctious. Not bad, just not a good sleeper and could not sit and play quietly. After 4 kids, I see the difference now as our other 3 occupy their time well. For the most part, they are all better sleepers too. Anyway, in '07 John excelled at anything athletics, lost the training wheels in an afternoon and took up indoor soccer. He was amazing, and we could see something was driving him. By 4 1/2, our third child came and then their maternal grandfather got a really bad rash. At first they thought it was poison ivy. No one suspected Celiac even though his mother was diagnosed with Celiac a few years earlier while in her 80s!! After many months of guessing, it took a walk-in center nurse to suggest Celiac and there you go, Celiac it was. The disease, although only 5 years ago, was still seen in a primitive light. Many of us laughed at Grandpa because he couldn't eat bread. Who'd ever heard of such a thing? I even thought this--having a grandpop who was, you guessed it, a bread delivery man for many years.
So John's maternal grandfather is diagnosed with Celiac in his late 50s and it meant nothing until John began to talk about "flat poops". At this point, by 5 years old, I had been home for over a year. I began monitoring his stools and weight, and even reported problems to his ped. He had problems for weeks off and on but still maintained his weight. The ped suggested a Celiac test but noted that "failure to thrive" and height/weight problems were a hallmark of GI issues. Of course, yes, because my father-in-law is 6ft 3! We moved to Germany and the test was never done. John was growing, so we were good, right?
We get to Germany in July '09. Things were awesome. Germany is awesome! My wife was just diagnosed with Grave's Disease, but looked super and felt great. We had three cool kids. Life was good.
Then John got sick with Strep. It was one episode after another, although not his first. In '08 he had got it a few times, no symptoms except for Scarlet Fever. This might have been when we first heard him speak of his "flat poops" I mentioned before.
Anyway, at one point in '10 we had him treated at a local military hospital with Penicillin and that's when the more severe diarrhea came. Before that John was really tired every night, normal for a Kindergarten kid, right? But I mean REALLY tired. By March '10 John was going twice a day and we were none the wiser. It wasn't until May when I noticed an unflushed stool that things weren't right. I suspected Celiac. And so did the German ped. We ran the gamut of testing and discovered deficiencies in iron, calcium, and a raised sedimentation rate among other things. We tried a number of diets and nothing worked. Then the abscess came, followed by a perianal fistula. This was August '10. After seeing his ped, John was sent to the hospital and had surgery performed--leaving a hole the size of a nickel to heal. It was horrific. It took 6 months for the hole to close. We got a 504 plan at school.
That week we had an upper and lower GI. John was six years old, and two months from seven years. The GI showed inflammation at the ilieum and colon. We started antibiotics and steroids. Azathioprin was introduced as well.
In the beginning, things improved a bit, but by November '11, John's calprotectin shot to 2700. Mom was diagnosed HYPOTHYROID by this point. We introduced MTX/folic acid and saw immediate results. These drugs continued along with Prednisone and AZA. Desperate, I put John on a Gluten Free diet in January '12, not knowing if the MTX would work. We watched his calprotectin drop and I did GF with him until July '12. At this point his calprotectin was at 300.
During our November '12 meeting, the specialist, already tapering the Prednisone, decided to cut it out entirely--without knowledge of the November calprotectin level. Being a compliant "sheep" of a no-nothing parent, I thought this was fine. Guess what? The calprotectin tripled from July--when I stopped GF to 1000.
So I lobbied for another round of GIs. This past January '13 I got them and an MRI. We discovered 30cm of inflamed small intestine. Colon was remarkably clean! No strictures, fistulas, or anything else anywhere. Celiac blood tests were fine (although I never saw the data!) Spoke to the specialist on 29 January 13 and he mentioned the biopsies consistent with Crohn's. Mentioned that John was considered a "medium" case.
Recommendation: Remicade
Currently John is on 100mg Azathioprin/daily, 10mg MTX/week, and 5mg Folic Acid/week. He's been off of Prednisone since November '11.
Right now we're leaning towards not taking the Remicade treatment. Beyond being a pain to administer, there's that fatal cancer risk I hear about. With my luck, we'd get it.
I don't buy what the doctor is selling. Why wean him off Prednisone without knowing his calprotectin level at the point of discontinuation? He weaned him based on a 4 month old test. Plus, here's some food for thought as mentioned by the doctor:
"Years ago we learned how to treat the GI symptoms. Then we got better at treating the actual inflammation. And now we can actually induce remission."
Thus, am I dealing with a doctor who is truly thinking in John's best interests, or is he greedy? That is, I'd rather have a malnourished and short son than a potentially dead one. I'd rather take my chances on surgery in five years and/or mortality by 60 than death now; however minute the chance.
We are scheduled to return Stateside July '14. We have the option to extend to July '16. I know we have time before making a decision on Remicade. I thought German doctors might be better, and some are as compared to Americans. But I don't know about this guy. Anyone know of a good GI specialist in the Dayton, Ohio area??? That's where we're from!
We are also scheduling my wife to get checked out. My theory is that someone has Crohn's in our family but it's been mild enough to go unnoticed. For such an early diagnosis, we're obviously dealing with something that has genetic teeth.
My biggest issue are kidney stones, but I haven't passed one in almost 4 years. I run everyday and have used that as a replacement for HCTZ. What a difference. Before '09 I had passed my first in '05. Then I began running daily starting in '08 and passed a stone each month for NINE months. You read that right. I was a weight lifter in college and I feel my stones stem from past diet.
Mom has the following:
-Hashimoto's Disease
-Iron Deficiency
-Nearly legally blind without glasses
-Teeth problems
-Bad restless leg syndrome
-Dad and Dad's mom with Celiac
John, btw, is back on a GF diet. We are on week 3 and he seems less tired...
As far as John's bio, he's into sports and that's about it. He's obsessed with sports, particularly football (Steelers) and international soccer (FC Kaiserslautern, Barca, Bayern Munich, and the US National Team). He plays soccer, basketball, and baseball. He's a swimmer and did gymnastics for a year. He now wants to do martial arts. He wants to play pro football and is in the third grade. He wants the Ravens to win the SuperBowl because he loves the AFC even though he's a diehard Steeler (mom's hometown!)
As a baby, John was a big eater--we suspect this was the first clue to his condition. At only about 8 1/2 pounds, we were surprised at how much he would nurse. As the first of FOUR we didn't realize that feeding all night long was a little out of the norm. I mean, and this is before I decided to stay home full time, at six months John would got to childcare with 5 nine oz bottles. That's 45oz of milk! On a typical day he'd consume 27oz at 6 months and the doctors felt that he was merely a hungry baby. Hungry is good, right?
Well he got massive. Totally off the charts by a year old. Then after my wife stopped nursing--BAM--ear infections! They were non-stop for months. By month four the doctors decided on tubes (now keep in mind our German peds. ordered tubes for our 2nd child after the second infection and they treated the infections with a nasal spray irrigation of the ear...wow...at home). John was on antibiotics for weeks straight and at least once a month for 4 months.
He got tubes and things improved. He was always sort of wild, like he was pre-occupying himself. Didn't potty train until almost three and his stool was in large volume, smelly, and soft. The doctors thought he was fine because he was big.
We moved from VA to OH in '07. John was 3 and rambunctious. Not bad, just not a good sleeper and could not sit and play quietly. After 4 kids, I see the difference now as our other 3 occupy their time well. For the most part, they are all better sleepers too. Anyway, in '07 John excelled at anything athletics, lost the training wheels in an afternoon and took up indoor soccer. He was amazing, and we could see something was driving him. By 4 1/2, our third child came and then their maternal grandfather got a really bad rash. At first they thought it was poison ivy. No one suspected Celiac even though his mother was diagnosed with Celiac a few years earlier while in her 80s!! After many months of guessing, it took a walk-in center nurse to suggest Celiac and there you go, Celiac it was. The disease, although only 5 years ago, was still seen in a primitive light. Many of us laughed at Grandpa because he couldn't eat bread. Who'd ever heard of such a thing? I even thought this--having a grandpop who was, you guessed it, a bread delivery man for many years.
So John's maternal grandfather is diagnosed with Celiac in his late 50s and it meant nothing until John began to talk about "flat poops". At this point, by 5 years old, I had been home for over a year. I began monitoring his stools and weight, and even reported problems to his ped. He had problems for weeks off and on but still maintained his weight. The ped suggested a Celiac test but noted that "failure to thrive" and height/weight problems were a hallmark of GI issues. Of course, yes, because my father-in-law is 6ft 3! We moved to Germany and the test was never done. John was growing, so we were good, right?
We get to Germany in July '09. Things were awesome. Germany is awesome! My wife was just diagnosed with Grave's Disease, but looked super and felt great. We had three cool kids. Life was good.
Then John got sick with Strep. It was one episode after another, although not his first. In '08 he had got it a few times, no symptoms except for Scarlet Fever. This might have been when we first heard him speak of his "flat poops" I mentioned before.
Anyway, at one point in '10 we had him treated at a local military hospital with Penicillin and that's when the more severe diarrhea came. Before that John was really tired every night, normal for a Kindergarten kid, right? But I mean REALLY tired. By March '10 John was going twice a day and we were none the wiser. It wasn't until May when I noticed an unflushed stool that things weren't right. I suspected Celiac. And so did the German ped. We ran the gamut of testing and discovered deficiencies in iron, calcium, and a raised sedimentation rate among other things. We tried a number of diets and nothing worked. Then the abscess came, followed by a perianal fistula. This was August '10. After seeing his ped, John was sent to the hospital and had surgery performed--leaving a hole the size of a nickel to heal. It was horrific. It took 6 months for the hole to close. We got a 504 plan at school.
That week we had an upper and lower GI. John was six years old, and two months from seven years. The GI showed inflammation at the ilieum and colon. We started antibiotics and steroids. Azathioprin was introduced as well.
In the beginning, things improved a bit, but by November '11, John's calprotectin shot to 2700. Mom was diagnosed HYPOTHYROID by this point. We introduced MTX/folic acid and saw immediate results. These drugs continued along with Prednisone and AZA. Desperate, I put John on a Gluten Free diet in January '12, not knowing if the MTX would work. We watched his calprotectin drop and I did GF with him until July '12. At this point his calprotectin was at 300.
During our November '12 meeting, the specialist, already tapering the Prednisone, decided to cut it out entirely--without knowledge of the November calprotectin level. Being a compliant "sheep" of a no-nothing parent, I thought this was fine. Guess what? The calprotectin tripled from July--when I stopped GF to 1000.
So I lobbied for another round of GIs. This past January '13 I got them and an MRI. We discovered 30cm of inflamed small intestine. Colon was remarkably clean! No strictures, fistulas, or anything else anywhere. Celiac blood tests were fine (although I never saw the data!) Spoke to the specialist on 29 January 13 and he mentioned the biopsies consistent with Crohn's. Mentioned that John was considered a "medium" case.
Recommendation: Remicade
Currently John is on 100mg Azathioprin/daily, 10mg MTX/week, and 5mg Folic Acid/week. He's been off of Prednisone since November '11.
Right now we're leaning towards not taking the Remicade treatment. Beyond being a pain to administer, there's that fatal cancer risk I hear about. With my luck, we'd get it.
I don't buy what the doctor is selling. Why wean him off Prednisone without knowing his calprotectin level at the point of discontinuation? He weaned him based on a 4 month old test. Plus, here's some food for thought as mentioned by the doctor:
"Years ago we learned how to treat the GI symptoms. Then we got better at treating the actual inflammation. And now we can actually induce remission."
Thus, am I dealing with a doctor who is truly thinking in John's best interests, or is he greedy? That is, I'd rather have a malnourished and short son than a potentially dead one. I'd rather take my chances on surgery in five years and/or mortality by 60 than death now; however minute the chance.
We are scheduled to return Stateside July '14. We have the option to extend to July '16. I know we have time before making a decision on Remicade. I thought German doctors might be better, and some are as compared to Americans. But I don't know about this guy. Anyone know of a good GI specialist in the Dayton, Ohio area??? That's where we're from!
We are also scheduling my wife to get checked out. My theory is that someone has Crohn's in our family but it's been mild enough to go unnoticed. For such an early diagnosis, we're obviously dealing with something that has genetic teeth.
My biggest issue are kidney stones, but I haven't passed one in almost 4 years. I run everyday and have used that as a replacement for HCTZ. What a difference. Before '09 I had passed my first in '05. Then I began running daily starting in '08 and passed a stone each month for NINE months. You read that right. I was a weight lifter in college and I feel my stones stem from past diet.
Mom has the following:
-Hashimoto's Disease
-Iron Deficiency
-Nearly legally blind without glasses
-Teeth problems
-Bad restless leg syndrome
-Dad and Dad's mom with Celiac
John, btw, is back on a GF diet. We are on week 3 and he seems less tired...
As far as John's bio, he's into sports and that's about it. He's obsessed with sports, particularly football (Steelers) and international soccer (FC Kaiserslautern, Barca, Bayern Munich, and the US National Team). He plays soccer, basketball, and baseball. He's a swimmer and did gymnastics for a year. He now wants to do martial arts. He wants to play pro football and is in the third grade. He wants the Ravens to win the SuperBowl because he loves the AFC even though he's a diehard Steeler (mom's hometown!)
