Dear Reflux Mom,
I'm desperately seeking help for my 12 year old son with autism. My son was normally calm and quiet until the past few months when he became very restless, screaming and having severe tantrums, self injury behaviors and endless sleepless nights. We brought him to many doctors, including a recent visit to an out of state children's hospital to find out why his behavior has changed and if it is related to a medical problem. After many tests and clinic visits, it was concluded that everything was normal and the doctors tied the behavior to his autism and puberty.
I am still concerned that reflux is affecting his behavior. The GI doctor said the endoscopy showed slight inflammation of his esophagus and we should give him Tums. I feel like his symptoms were disregarded as if it's not a big deal or blamed on his label again Anyway, my son is really suffering daily due to his behavior. He is also refusing to eat and losing weight. I'm so worried because I think it's a major reflux issue that he's going thru. He's not sleeping at all, screaming all night, injuring himself and pacing around the house all day. I cannot send him to school since he can't even learn at this point. I'm currently trying to avoid all the food that may be problematic for the reflux issue, and just started giving him Tums for children. I'm waiting for some relief with his symptoms and behavior. I'm sorry for this long note but I wanted to ask you if there's anything you suggest I can do to help him get out of this misery immediately, other than the foods and Tums?
I thank you so much for your help. We're so worried that he may be admitted to the ER pretty soon if he continues this way....sleeping 2hrs, hurting himself, not eating and drinking. Please help!
From: Worried Mum
Hello Worried Mum,
Oh big huge hugs to you and your son. What a terrible situation. You must be so worried. It is possible to get your son the help that he needs but it takes extra work when a child has autism, affecting his sensory system and his ability to communicate.
A while ago, I went to a very interesting and informative meeting on ASD (autism spectrum disorders) and GI disorders. There was a great deal of discussion on the under- diagnosis and under-treatment of gastrointestinal disorders in this group. Often, if a child is having behavioral problems, it is assumed that it is due to autism, not to an illness.
Certainly it is worrisome that your son has mild esophagitis. Many children with mild esophagitis would have a minor tummy upset or heartburn. However, if your sensory system is wired differently due to autism; mild esophagitis may go unnoticed in one child with autism or feel like the worst pain imaginable in another. That is because some children with autism have a sensory system that is sluggish and unresponsive and others have a sensory system that is in hyper-responsive. Perhaps your son has a painful medical condition (esophagitis) combined with a hyper-responsive sensory system so his perception of the pain is much higher.
I wonder if your pediatrician is in a position to coordinate care and help with referrals or treatment recommendations. Maybe the pediatrician would be willing to try a short term trial of reflux medication to see if there is an improvement in his symptoms. You could also get a referral to another gastroenterologist with experience working with children with ASD for further evaluation. The pediatrician may also help you figure out if there is another illness or condition that is causing so much discomfort.
Let me know your thoughts and PLEASE keep in touch.
From The Reflux Mom
Dear Reflux Mom,
Thank you so much for writing back. We saw several DAN doctors (Defeat Autism Doctors) in the past and they had found yeast overgrowth and parasites. My son had treatments for these, but we never saw any improvement functionally or in other areas. I'm getting another test on him soon for possible yeast overgrowth, bacteria and parasites with a DAN doctor. They're the only ones who understand most of the issues our kids have. For now I'll continue to give him probiotics and the pediatrician just started Zantac today. The pediatrician also suggested putting him on Respideral to calm down the self injury and sleeplessness temporarily. It seems to help with the self injury. He's also a bit calmer than the past week. My son has some of the symptoms of GERD listed on the website so I hope to get a clarification from another GI doctor soon.
Thank you so much for the information. I'll keep you posted.
From: Worried Mum