One of the many problems with having a medically fragile, special needs child who receives private duty nursing is that you have very little control of your child's health care. Where I can give Emily and Ethan chicken nuggets and french fries for dinner occasionally, Caden's diet is doctor regulated and needs to be administered as directed by his nurses. There is no room for Mommy to do her thing and use that Mommy gut instinct to care for her child.
It is almost as if he is a child of the state (or at least the medical world). I can suggest ideas to medical professionals after doing hours upon hours of extensive research, but most doctors just brush my ideas aside with some scientific justification as to why my ideas are not possible. I understand they have years of education and experience on me but my son is unlike any child out there. Doctors have said it themselves. So if Caden is unlike any other child out there, isn't it reasonable to think something may be possible although science would normally suggest it shouldn't be?
For example, when Caden had his last visit with his G.I. who has worked with Caden for the past three years, I suggested we take a look at Caden's Vitamin B level being many of my readers had suggested his symptoms resemble a deficiency. Caden's G.I. said that because he wasn't anemic he wouldn't have a Vitamin B defiicncy. Okay...fair enough, but since Caden is unlike any child out there isn't it possible he could have a deficiency without being anemic? It is a simple blood test that has never been done with the ten thousand blood draws Caden has had. Yes, I agree, it is most likely not the cause of many of his issues, but a simple test could either eliminate that possibility or show something easy to fix.
Another very frustrating example, is when I suggested to his one doctor the possibility of a casein allergy (Casein is a protein commonly found in animal milk). She said that his last endoscopy did not show any signs of Eosinophilic Esophagitis (an allergic inflammatory condition of the esophagus). Okay...but isn't it worth a shot to tweek his diet to eliminate a somewhat common food allergen just to see if it makes a difference?
These are both very simple, harmless requests from Mom but you would think I was asking for a complete bowel transplant. So after much thinking, I have decided to take back control of my son's health. Well, at least the diet part. Now I am not a registered dietitian but I am a Health teacher with a Masters degree and more importantly, a Mom with common sense. So this weekend I am attempting to try a blenderized diet which will be gluten free and casein free. We will see what happens. Worse case scenario, we see no improvement and decide what to do next. But it is possible that we will see some improvement, particularly with Caden's intestinal cramping.
Yes...I am thinking outside of the box. I am starting with the least invasive, simplest "fix" and will move on from there. Who knows?
What I do know is that my little boy can not go on like this. We can not continue to watch him suffer. I am taking back my son and his health. I will use my motherly instinct and love; something no doctor with any level of education can do for Caden.