- Joined
- Jul 3, 2012
- Messages
- 19
Hi, everyone. Apologies in advance for the War and Peace length of this post.
We moved to Malaysia in September from the US. I am American, husband is Australian.
My daughter Olivia (now four) has been a pretty healthy child. No food allergies, no major illnesses, a pretty happy kid. She started experiencing increasingly severe and frequent stomach pains at the beginning of May. It started out as occasional "mom, my tummy kind of hurts", progressed to frequent "Owwwww! My tummy HURTS!" and then settled in as a constant baseline discomfort with serious flares of pain (tears, moaning, shaking), both at random times unrelated to meals and somewhat predictably after eating and while she tried to sleep.
The pain had progressed to the point where she was unable to sleep, didn't want to play with friends, and couldn't finish a meal without having a pain flare (of the variety where she would point to the most unhappy face on the pain scale). No diarrhea, no constipation (though she had some when she was younger, managed by upping dietary fiber), no vomiting.
Her paternal grandmother has gluten sensitivity (though not true Celiac) and fructose malabsorbtion, and describes having had identical symptoms as a child. After the third ER visit, I started asking (demanding!) for testing. The doctors at the recommended, modern, popular-with-the-expatriate-and-medical-tourist crowd hospital (Prince Court Hospital) in Kuala Lumpur alternately advised us that the pain was from "colic" (and prescribed a medication that is limited to veterinary use only in some countries) or that we needed to "change her formula" (because here, many four year olds still drink formula) or that we should "just see how she goes on pro-biotics/lactose-free milk/Tylenol/etc."
After much gnashing of teeth and stamping of feet, a gluten panel was run, and ultimately came back negative. The requesting gastroenterologist did not request the full panel of celiac labs, as noted by the lab itself. Negligence, but probably not of any consequence given later developments. The dietician that we were sent to was hopelessly ill-informed. Ultimately, we were told "she's faking it" by several doctors (including her primary pediatrician) and pretty much written off as being crazy Western parents.
I tried giving her a gluten free, fructose free, FODmap compliant diet. No change initially, but after one last acute episode that landed us in a different ER, her pain seemed to stabilize a bit. I don't know if the diet changes had any part of that or if Olivia had just accepted the pain.
As a result of the "she's faking it" comment, we consulted with one of the only pediatric gastroenterologists in the country (and head of the pediatric department at the University of Malaysia). The night before her appointment with him, she passed some blood in her stool for the first time (that we noticed). We also switched her care to one of the older private Malaysian hospitals (Subang Jaya Medical Center), which is quite far away from our home. Within a day of seeing the new pediatric gastro and within hours of seeing a new pediatrician, her case was deemed urgent and she was admitted to SJMC. The following day had an endoscopy and colonoscopy. The pediatric gastro at UM was unable to do the procedure because *all of the endoscopy equipment had been stolen from the hospital the weekend before* :ybatty: so another gastro at SJMC did the actual procedure.
While the endoscopy was negative (i.e., no Celiac/gluten issue), the colonoscopy revealed that she had one of the largest cecal ulcers the operating gastroenterologist had ever seen on a four year old, and diffuse patchy inflammation. Bacterial testing was negative. A confab between the pediatric gastro, the operating gastro, and the new pediatrician lead to a diagnosis of Crohn's disease.
I really want to talk to SOMEONE about the diagnosis, our treatment options, and her long term prognosis. We like the new team of doctors that we are using. They seemed to immediately recognize that Olivia was in dire need of more aggressive treatment. However, we are feeling pretty gun-shy given (a) the fact that our concerns were not adequately addressed (or even completely dismissed) for nearly two months at the old hospital, and requested tests were not run or mis-characterized as "not done" in Malaysia, even as Olivia's condition grew worse, she lost weight, and she started passing blood; and (b) Crohn's is not a very common ailment in this part of the world, and the pediatric gastroenterologist admitted he typically sees fewer than a dozen cases a year, even as a specialist.
I need help. I had researched and prepared myself for putting her on a gluten free, fructose free, FODmap compliant diet. I was ready to go in all "Warrior Mom" style on that. Now, we have suddenly changed course. I have only dipped my toe into the IBD world, but I already feel defeated. And tired. So very, very tired. I also have a younger daughter who also needs her mom. And I am still trying to cope with raising kids in Malaysia. There are just so many things here that are shockingly unpredictable, the least of which is regular access to functioning telecommunication services, the most pressing of which is what seems to be a schizophrenic health care system which I don't know how to navigate and truly don't know whether to trust.
Argh. Any advice/direction/recommendations at this point would be appreciated. I know better than to randomly trust unknown internet acquaintances for medical advice without doing due diligence, but I just don't know what to do at this point.
Thanks so very, very much.
Merida
We moved to Malaysia in September from the US. I am American, husband is Australian.
My daughter Olivia (now four) has been a pretty healthy child. No food allergies, no major illnesses, a pretty happy kid. She started experiencing increasingly severe and frequent stomach pains at the beginning of May. It started out as occasional "mom, my tummy kind of hurts", progressed to frequent "Owwwww! My tummy HURTS!" and then settled in as a constant baseline discomfort with serious flares of pain (tears, moaning, shaking), both at random times unrelated to meals and somewhat predictably after eating and while she tried to sleep.
The pain had progressed to the point where she was unable to sleep, didn't want to play with friends, and couldn't finish a meal without having a pain flare (of the variety where she would point to the most unhappy face on the pain scale). No diarrhea, no constipation (though she had some when she was younger, managed by upping dietary fiber), no vomiting.
Her paternal grandmother has gluten sensitivity (though not true Celiac) and fructose malabsorbtion, and describes having had identical symptoms as a child. After the third ER visit, I started asking (demanding!) for testing. The doctors at the recommended, modern, popular-with-the-expatriate-and-medical-tourist crowd hospital (Prince Court Hospital) in Kuala Lumpur alternately advised us that the pain was from "colic" (and prescribed a medication that is limited to veterinary use only in some countries) or that we needed to "change her formula" (because here, many four year olds still drink formula) or that we should "just see how she goes on pro-biotics/lactose-free milk/Tylenol/etc."
After much gnashing of teeth and stamping of feet, a gluten panel was run, and ultimately came back negative. The requesting gastroenterologist did not request the full panel of celiac labs, as noted by the lab itself. Negligence, but probably not of any consequence given later developments. The dietician that we were sent to was hopelessly ill-informed. Ultimately, we were told "she's faking it" by several doctors (including her primary pediatrician) and pretty much written off as being crazy Western parents.
I tried giving her a gluten free, fructose free, FODmap compliant diet. No change initially, but after one last acute episode that landed us in a different ER, her pain seemed to stabilize a bit. I don't know if the diet changes had any part of that or if Olivia had just accepted the pain.
As a result of the "she's faking it" comment, we consulted with one of the only pediatric gastroenterologists in the country (and head of the pediatric department at the University of Malaysia). The night before her appointment with him, she passed some blood in her stool for the first time (that we noticed). We also switched her care to one of the older private Malaysian hospitals (Subang Jaya Medical Center), which is quite far away from our home. Within a day of seeing the new pediatric gastro and within hours of seeing a new pediatrician, her case was deemed urgent and she was admitted to SJMC. The following day had an endoscopy and colonoscopy. The pediatric gastro at UM was unable to do the procedure because *all of the endoscopy equipment had been stolen from the hospital the weekend before* :ybatty: so another gastro at SJMC did the actual procedure.
While the endoscopy was negative (i.e., no Celiac/gluten issue), the colonoscopy revealed that she had one of the largest cecal ulcers the operating gastroenterologist had ever seen on a four year old, and diffuse patchy inflammation. Bacterial testing was negative. A confab between the pediatric gastro, the operating gastro, and the new pediatrician lead to a diagnosis of Crohn's disease.
I really want to talk to SOMEONE about the diagnosis, our treatment options, and her long term prognosis. We like the new team of doctors that we are using. They seemed to immediately recognize that Olivia was in dire need of more aggressive treatment. However, we are feeling pretty gun-shy given (a) the fact that our concerns were not adequately addressed (or even completely dismissed) for nearly two months at the old hospital, and requested tests were not run or mis-characterized as "not done" in Malaysia, even as Olivia's condition grew worse, she lost weight, and she started passing blood; and (b) Crohn's is not a very common ailment in this part of the world, and the pediatric gastroenterologist admitted he typically sees fewer than a dozen cases a year, even as a specialist.
I need help. I had researched and prepared myself for putting her on a gluten free, fructose free, FODmap compliant diet. I was ready to go in all "Warrior Mom" style on that. Now, we have suddenly changed course. I have only dipped my toe into the IBD world, but I already feel defeated. And tired. So very, very tired. I also have a younger daughter who also needs her mom. And I am still trying to cope with raising kids in Malaysia. There are just so many things here that are shockingly unpredictable, the least of which is regular access to functioning telecommunication services, the most pressing of which is what seems to be a schizophrenic health care system which I don't know how to navigate and truly don't know whether to trust.
Argh. Any advice/direction/recommendations at this point would be appreciated. I know better than to randomly trust unknown internet acquaintances for medical advice without doing due diligence, but I just don't know what to do at this point.
Thanks so very, very much.
Merida
