- Joined
- Jun 1, 2018
- Messages
- 25
Wow - this is a little like stage fright - I have never shared information like this publicly
. I am mom of recently dx CD 16 yo son - A. (April 2018) but my story starts with his younger brother, now 14.
2012-2014ish we really struggled with nonCD son (then 8-10 years old). He was born with hypotonia. Not terrible, just needed a lot of therapy, and was told he just needed to always be stronger than kids his age, but he will never get worse. One area it affected was the ability to chew and swallow. He actually went to therapy to re-learn how to properly chew. As a result, he became very worried about choking, and what we didn't know was that he was developing an eating disorder. He was hiding his food in his pockets, in empty milk containers, etc. He was a very picky eater, etc. In 2012 when we brought him in for his annual he had not grown or gained weight and was dx failure to thrive. That was when we started to find out about the food hiding, etc. He began therapy, went to nutritional specialist MD and back to the swallow therapist. Over the span of those two years, his food anxiety became really high and he would vomit after eating. He was very restrictive and eventually was only drinking carnation instant breakfast. Which also came up. We hospitalized him in 2014 for several weeks, where he went though an awful but needed eating disorder protocol. It's a difficult thing to go through but it was a matter of taking all food control away from him and slowly give it back. They taught us the Maudsley method, a family based therapy. I won't go into the details but I will say while it worked, there is definitely a detrimental effect to the family. He successfully gained weight that summer and went from full bed restriction to participating in fall sports with no restrictions (It was all based upon weight gain)
In 2016 his older brother - A - started to lose weight. Keep in mind we were still working with his younger brother, and eating around the table was extremely stressful. We thought the stress was bothering his brother. Eventually A began to display similar symptoms (not hungry, worried about eating and occasionally vomiting after getting food in) We ended up switching pediatricians since we did not have an overly receptive one. New pediatrician asked about A's cough, which other ped dx as asthma. He said it was an acid reflux cough. Put on acid reflux med, appetite increaser, and antidepressant. A felt better within days, started gaining weight again and eating.
2017 A became sick with fevers, stomach ache, lethargy, etc. Fevers ended with sores in his mouth. We though Coxsackie virus - he never had it as a kid. He never really recovered from that in hindsight - but we didn't know. He started to lose weight again, became withdrawn (thought teenage issues). Upped the antidepressant (still really low dose) sent to therapy saw a nutritionist. Seemed better but still tired all the time. Loose stool never stopped after the spring virus (not frequent). Stomachaches began in fall through winter, then more cyclical fevers, night sweats this past spring and eventually dx in April with Crohn's.
You all know where I am going now, right?
Every single stomach ache with younger sib I wonder. We thought A had what younger sib had. In fact, A had CD. But maybe this whole time....
Younger sib still doesn't enjoy eating. He does eat and his growth is ok, he is back on his growth line. My exciting news recently was to see his 14 year molars fall out in his 14th year. His teeth were a little behind. We did run blood work recently and all was normal, but low in ferritin...not anemic, all other RBC tests normal. Started him on iron supplements per dr. And he said he would retest in a couple of months. Dr not overly concerned, only put on iron bc I am worried and he knows we have been through the wringer.
I am still worried. Dad is trying to not be. Dad very recently dx with high BP, likely due to all of this.
So, thoughts on what we should do to ease my worrying mind without traumatizing my already traumatized 14 yo?
. I am mom of recently dx CD 16 yo son - A. (April 2018) but my story starts with his younger brother, now 14.2012-2014ish we really struggled with nonCD son (then 8-10 years old). He was born with hypotonia. Not terrible, just needed a lot of therapy, and was told he just needed to always be stronger than kids his age, but he will never get worse. One area it affected was the ability to chew and swallow. He actually went to therapy to re-learn how to properly chew. As a result, he became very worried about choking, and what we didn't know was that he was developing an eating disorder. He was hiding his food in his pockets, in empty milk containers, etc. He was a very picky eater, etc. In 2012 when we brought him in for his annual he had not grown or gained weight and was dx failure to thrive. That was when we started to find out about the food hiding, etc. He began therapy, went to nutritional specialist MD and back to the swallow therapist. Over the span of those two years, his food anxiety became really high and he would vomit after eating. He was very restrictive and eventually was only drinking carnation instant breakfast. Which also came up. We hospitalized him in 2014 for several weeks, where he went though an awful but needed eating disorder protocol. It's a difficult thing to go through but it was a matter of taking all food control away from him and slowly give it back. They taught us the Maudsley method, a family based therapy. I won't go into the details but I will say while it worked, there is definitely a detrimental effect to the family. He successfully gained weight that summer and went from full bed restriction to participating in fall sports with no restrictions (It was all based upon weight gain)
In 2016 his older brother - A - started to lose weight. Keep in mind we were still working with his younger brother, and eating around the table was extremely stressful. We thought the stress was bothering his brother. Eventually A began to display similar symptoms (not hungry, worried about eating and occasionally vomiting after getting food in) We ended up switching pediatricians since we did not have an overly receptive one. New pediatrician asked about A's cough, which other ped dx as asthma. He said it was an acid reflux cough. Put on acid reflux med, appetite increaser, and antidepressant. A felt better within days, started gaining weight again and eating.
2017 A became sick with fevers, stomach ache, lethargy, etc. Fevers ended with sores in his mouth. We though Coxsackie virus - he never had it as a kid. He never really recovered from that in hindsight - but we didn't know. He started to lose weight again, became withdrawn (thought teenage issues). Upped the antidepressant (still really low dose) sent to therapy saw a nutritionist. Seemed better but still tired all the time. Loose stool never stopped after the spring virus (not frequent). Stomachaches began in fall through winter, then more cyclical fevers, night sweats this past spring and eventually dx in April with Crohn's.
You all know where I am going now, right?
Every single stomach ache with younger sib I wonder. We thought A had what younger sib had. In fact, A had CD. But maybe this whole time....
Younger sib still doesn't enjoy eating. He does eat and his growth is ok, he is back on his growth line. My exciting news recently was to see his 14 year molars fall out in his 14th year. His teeth were a little behind. We did run blood work recently and all was normal, but low in ferritin...not anemic, all other RBC tests normal. Started him on iron supplements per dr. And he said he would retest in a couple of months. Dr not overly concerned, only put on iron bc I am worried and he knows we have been through the wringer.
I am still worried. Dad is trying to not be. Dad very recently dx with high BP, likely due to all of this.
So, thoughts on what we should do to ease my worrying mind without traumatizing my already traumatized 14 yo?
