Friday, September 23, 2011
If you have a child with special needs, you probably understand the title of this blog, if not, let me explain. Medicine trials have been common in Teale's life, her whole life. Whether it was trying to control her constipation issues, her mood disorders, her seizures or one of the other many issues she is plagued by, medicine trials are often brutal on her and us. When you put a child with severe brain damage on a new medication, it is a trial. It is a trial because the body and brain chemistry is different in all people. How I react to a medication may be completely different than how you react. One example is that many people use Benedryl for an easy sleep aid, Benedryl wires me. I will lie awake with my brain unable to shut down if I take Benedryl close to bedtime. Teale's complication of brain damage changes how her body will react even more so. There are no statistics on how someone with her brain will react to the many medications out there. The studies that the FDA does are on typical non brain damaged people. Teale's most difficult medication trials have been surrounding her mood disorders. Medications that are supposed to help her feel more calm inside, have made her manic on more than one occasion. Ones that are supposed to help her sleep or have not listed insomnia as a side effect, have caused insomnia many times. There are multiply side effects listed with her most potent medications, but after a while, you basically ignore them because she never has the "typical" reaction anyway. Medication trials with Teale have not been done without much thought, discussion and research on Mark and my part. Over the years we have accepted that maybe this is the best Teale is going to be. Mark and I have accepted our crazy life in more ways than most probably realize. It is what it is and we do the best we can. Often, when thinking about doing a new medication trial, we look at how Teale is doing presently. Is she happy, is she sleeping well, is she basically manageable during awake times? If the answers are mostly yes, we probably won't try a new medication because too many times we have learned "it could always be worse." With every discussion we have with her doctors there is typically a new medication suggested, "that might be worth a try." Often I walk away from those appointments saying "let me talk it over with Mark and do some research." Sometimes I actually get the script filled, only to have it sit in our cupboard waiting for us to either conjure up the courage or be so desperate, that we give it to Teale. I have been jilted by these trials countless times. I have less confidence in her doctors than I did when I started on this journey. Not that they have let me down, just that I have learned that they too are just guessing when it comes to Teale's care. I have much more confidence in my abilities and gut instincts than I did when I first brought her home from the NICU. I have lost a certain innocence I used to have, when I thought doctors knew much more than I. I used to have faith her issues could be fixed by them, by medications and by interventions. I now look at Teale and know we have come far, but that we may never solve it all. This doesn't mean I have given up on her progression, or stopped hoping and researching help for her. It is more of an acceptance that the roller coaster we ride with Teale may never smooth out completely. It is an acceptance that not everything can be solved or fixed. It is an acceptance that we and her doctors are human and have limitations. It is an acceptance that only God really knows the plan and the journey we are on, so with that I put my faith in His hands.