You know your child's behavior is bad when you go to his annual pulmonology checkup and leave with a prescription for an antipsychotic medication.....for him, not me.....don't laugh because I am probably right behind Garrett on this one!!!!!
We were called back to the weighing and testing room on schedule today, and Garrett allowed the LPN to weigh him on a wheelchair scale (no cooperation for regular scale today, but some days this year he has let us put him on one) after 10 minutes of coaxing, allowed us to measure his height, and then no pulse-ox check, NO WAAAAAAY!!!!!! Also no chance whatsoever at any lung function tests....nope, nadda, go to hell nurse!!!!!!!
So we waited in the exam room for a half hour or so, a nurse came in to get his list of meds and ask some questions, and then more waiting. The pulmonologist came in and Garrett went into the best mix of ADHD, Autism and Sensory Integration Disorder I could ever imagine. Robin Williams couldn't have TOUCHED impersonating Garrett today!! It was wild. He was making these loud slams trying to open and close locked cabinets under the exam table while hitting me while screaming songs and random wacky words and phrases at the TOP OF HIS LUNGS over and over and over. It escalated as the doctor and I tried to talk, so the doctor (BRILLIANT, amazing guy!!!!) started aiming his attention toward Garrett, which helped a little. So the doctor says, "So Garrett, Garrett....GARRETT (and finally gets his attention). What are your other doctors doing about your autism, behavioral issues and all? This must be weighing heavily on your mommy and daddy and making it very hard for your sisters to get a word in or any attention in your house or family life."
I lost it. I began crying, lip shaking, sobbing, trying to thank this man for acknowleging the hell of our family dysfunction and trying to tell him NOTHING, NOTHING IS BEING DONE!!!!! I talked to our mito doc's nurse, and she said that the mito doctor doesn't address those issues, but they have people in the same practice in HOUSTON, A FOUR HOUR DRIVE WE CANNOT MAKE AGAIN WITH MY SON, who could see him. Our neurologist here can't see him until another couple of weeks. His pediatrician can't see him until August 25 for his 5 yr checkup, so NOTHING HAS BEEN DONE!! I have shared these issues with the other doctors before, but it takes a pulmonologist to get anywhere!!!!! At least we have him on our team!!! So he wrote a prescription for Risperidone, an antipsychotic med used on autistic kids and bipolar people and other things......I am emotionally exhausted and can't rememer the rest. Maybe the little voices will kick in soon and remind me.....standby......I will wait to hear back from an email I sent to the mito doctor's nurse to double check they are okay with this med before we begin. It will be given at night, and it can help, or it can cause things to get worse, which means it's not working. Grouchy said, "Seriously, it could get worse??? Is that possible??" Yes, Grouchy, if Garrett stops being able to sleep, it all gets worse....I will be in a straight jacket!!! I have to at least have some rest!!!
So there it is, oh, also learned Garrett's chest appears to the pulm. to be getting weaker, and his ribs are "downward slanting." That's a tiny detail compared to the behavioral issues. At least since he isn't sick now, it's a tiny seeming thing......praying for no pneumonia or flu, ever!! Don't want to take this little chest for a test run!!!
Love and blessings to you and yours. That's the main meat of the days. Notice I didn't mention anything about doing anything with Addie and Ainslee.....just didn't happen. I pray when the bus takes Garrett to his class on Wednesday, I get my time back with my girls. We live and breathe in the same house, same family, but I miss them terribly.
Oh, I think I am starting to get Garrett to say I LOVE YOU TOO, when we tell him I LOVE YOU. For about 6 months he has replied I DON'T LOVE YOU TOO and thought it was funny. It isn't funny. It hurts. I know it's a toddler saying something silly, but it's messing with our psyche.....so I am trying to teach him the correct response....Sometimes the little things grow into huge things.
Godspeed,
CL
First of all, I have to agree-Dr. T knows how to get things done!!
ReplyDeleteAlso, since Garret's issues are so severe, but I don't really know his history, I am wondering if he has regular appointments with the neurologist already? Because Tucker has appts every 6 months with the neuro, but at one point we had seizure like episodes...the neuro said they'd fit us in within a month, but I called his ped and she called the neurologist, we got in two days later.
So if you call the pediatrician, maybe that doc can work some magic for you??
And wow, I agree not sleeping would definitely make things worse!
It does feel good when someone acknowledges what you and your family has been going through, even though it then makes it more "real" and brings out tons of emotions.
I hope to meet you soon and have a good long chat.
Leigh