Being a parent can be the toughest job in the world. What makes it even more difficult is when there are medical issues going on and a doctor that won’t listen.
Since the boys were premature, we have Early Access that helps guarantee they reach their milestones at the appropriate time and so forth. Since the beginning, I have talked with them about the amount of spit up the boys have had. They were kind of shocked that the boys were not on any form of reflux meds. (apparently we were the only preemies that WEREN’T being treated for such) Lucas’ physical therapist was concerned, Nathan has had episodes of losing his voice and being extremely raspy, and yet, our physician continued to tell us “If they aren’t losing weight, they’re fine.” Our physical therapist even told us to ask him if it might be Sandifer Syndrome to which the doctor’s reply? “Never heard of it.”
With moving, we found a pediatrician near and decided to give it a go. I was very nervous going in that my husband and I would be shrugged off once again. Sure enough, as I explained my concerns, what care providers and myself have witnessed, someone listened. She completely understood my concerns about the effect on their esophagus and so forth. I finally found a doctor I can trust to listen and understand my worry as a mom.
While we have “started” the meds., a whole new issue has came in to play. The medicine apparently tastes HORRID. Both boys have spit, shown disgust, gagged, even turned blue holding breath at the taste of this stuff. I’m not fighting to find a way to get these turkeys to keep their medicine down.
Do you have experience with reflux?
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This is a problem with premature single births as well. My amazing son, Zach, now almost 12 years old, experienced severe reflux and what I was told was cholic for at least the first 6 months of his life. He was only born a month earlier than the prospective due date, but I experienced some of the same indifference in doctors offices in San Antonio, TX as you did with your boys. We changed doctors 4 times before moving back to Iowa to encounter absolutely nothing new.
“As long as he is gaining weight, you have nothing to worry about.” This was the line we heard from everyone we encountered. Personally, I believe the “cholic” was actually in response to the pain in his esophagus. If it hurts to swallow, how else is your infant supposed to tell you they are in pain? At that age, children are incapable of telling you they hurt in any other way than to cry.
We were told to add cereal to his formula, by his doctors, in order to thicken it. The intent being to help it stay down, “coat his ribs” they said. I never liked hearing that. It is something that we, as parents, are specifically told not to do because an infant’s digestive system is simply, not adequately equipped to inter at ages nearing 2 months.
The battle became more difficult when Zach’s father and I discovered this was something we disagreed upon. He wanted to blindly follow what the doctors were saying; whereas, I continued to search for another professional willing to listen and offer a real solution to our son’s plight.
I realize that the world of medicine is constantly changing, and I hope, improving through constant studies and continued education. I find it vicariously vindicating to hear your story and learn that the medical field at least offers some type of medication to help combat this condition, regardless of the new difficulties you are experiencing from it. I am relieved to know in my heart and mind that I was right after all.
Zach was eventually placed on Enfamil A.R., the most expensive formula on the market at the time. I hated being told I could no longer breastfeed because I could not keep up with his seemingly unending need for massively increased amounts of milk. I don’t know who was more frustrated or in more pain from the whole ordeal to be honest, me or Zach. The formula helped a little because it was thicker. He kept about 25% more down than before, but now I wonder what the permanent effects will be on his health.
Zach seems to be a happy, healthy tween, despite his remaining in the twentieth weight percentile of other children his age. His height is more in the fiftieth percentile range. I can’t help but wonder, “Are these just the first signs of severe reflux left untreated?”
I do wonder if there is anything your pharmacist can do to assist in your plight? Many offer different flavors that can be added to medicines for older children to help them ingest it with less difficulty. What could it hurt to ask? Just suggesting of course.
From a slightly different perspective, ginger is well-known for it’s properties that aid our digestive systems in working more quickly and efficiently. I would also suggest that you seek information from a more holistic approach. Seek out a reputable physician practicing Holistic medicine for their opinion….or maybe a few for verification of their opinions.
If what they tell you sounds like it might work, you can always take that information back to your boys’ regular pediatrician before trying anything. At least that way you have a more realistic picture of what any counterindications may be possible, as well as some assurance that a different approach will not be harmful to their health and development.
Personally, I have a myriad of health issues and conditions. Many of my final decisions for treatment have become lifestyle and nutrition/diet changes, due to allergies to many common ingredients in various medications and household products. I have experienced more personal success with my children by seeking out any information that can lead to positive changes in not only my children’s health, but also their behavior(s), just by changing the foods they eat.
That being said, I wish you God’s speed in your search for an answer that works for you and your boys! Good luck, and, Jenna, don’t forget to take time out for yourself while you are going through this difficult time. Naps are still great for Mommies’ stress levels, too! (Not to mention awesome bonding time with the boys… 🙂 )