Anytime that I go for an appointment, I try to make sure that I am completely ready for whatever they may ask for. I like to have lists of questions to go over, stuff to discuss, questions that I should ask about stuff that may change.
This comes from years of being subjected to multiple appointments that I literally lost my mind. Be it from days on end of no sleep, or Like February when I had appointment on top of appointment that I just needed to keep track of info.. Some thing always falls through the cracks. If it does, you can almost bet that if you send a note or call and ask the question later, they ask you to come in for another appointment. That I am not a fan of. I have TOO many appointments as it is.
But today, my mind is on an appointment for my CVS’r, Chewy :).
I know he wants to discuss not taking his preventative med with the doctor. It makes him “swimy”. That is the term he uses to describe how his head feels when he takes the med. He’s a teen. He doesn’t want to feel “swimy” or sick, or that he needs medication. They think they are invincible. He knows he’s not. He knows now how close he came to not making it. It has made him mature much faster than the kids his age. But we all need to keep in mind.. he is still a kid.
This is where my mind went today.
There is some great info in here. But we have never been the typical CVS patient. Like I mentioned in this post https://wordpress.com/post/12803581/422/, his treatments are quite aggressive. Determining if the side effects were worth the price of the treatment.
This time during the inpatient, they addressed the blood clotting disorder, and that the treatment could cause blood clots. They took additional steps to address this, but it meant that he was literally confined to the bed, or in constant motion.
This is why I mention to every CVS caregiver, to document or note everything. You learn from that.
The doctor said that I had the time he was on one medication wrong.. I used to carry his medical records with me. I knew them in and out. I know more than any mother should.. who isn’t educated in the medical field. They wanted to train me to put in an NG tube.. But to practice on my son.. (shiver) I can absolutely maintain one. Even on less than 2 hours of napping.. I mean sleeping. So I know. I can prove what they “notated” in their records was wrong.. mainly because I have the records.. he had been to SOO many places.. and his meds changed SOOO much.. that, that was one of his problems.. He was being “over-medicated”.
But doing what is best for your kid is about educating yourself. So today, I make my notes. I make my list of questions. And hope that the doctors listen. My last meeting with them was not very good. We are happy with where we are at. The DHE seems good for him. Seems to be the best preventative. The others have more of a negative impact on him. I don’t like that they push to just keep him on stuff that make him not feel well. But we have to try to placate them..
I feel like that anyway. I know they saved him.. but, I wonder when everything that we are doing to his body now will take it’s toll on it later..
The 2-3 years that he didn’t get nutrition during the uncontrolled/misdiagnosed periods took its toll on his growing and development. Although he did eventually get nutrition, I wonder how it’s latency affected his muscle development. Is it still just the mitochondrial side of things that affect his energy? See? the wheels are always turning.
and if you haven’t already.. Join a support group.. They help a lot.. even when you have no idea what you are in for.
Here is our on Facebook for Cyclic Vomiting Syndrome. https://www.facebook.com/CVS.Speaks?fref=ts