My poor son. He just can’t catch a break, none of us can, it seems.
My son developed tics this summer. They started mild and now have progressed to severe, whole body jerks, stiffness, back arching, yelling and collapsing on the floor. He then lays there and zones out for a few minutes before coming back to reality.
Our psychiatrist thought it could be a type of seizure and was able to get us an appointment with the only pediatric neurologist in the entire province.
I was so excited to hopefully get some help for my son.
She spent about 10 minutes with us and declared they are not seizures despite being the exact symptoms of Myoclonic seizures, he’s fine, the tics are nothing and he should get more sleep and learn to relax.
My son has been asking for some kind of medication to help his tics. They really take a lot out of him. He is embarrassed at school and frustrated when he wants to do something but can’t because the tics are overwhelming him.
The only medication they will give us is Respiridone. Nothing like starting with the most intense medication.
So my options are all or nothing. It’s like going to the doctor and telling them your hand hurts. The doctor gives you the option to either amputate or do nothing.
If you’re not familiar with Respiridone, let me tell you about it.
It’s an antipsychotic used primarily for schizophrenia and bi-polar disorder, but can occasionally reduce tics.
It has severe side effects like tardive dyskinesia, diabetes, weight gain due to hormonal imbalances, man boobs in boys, (In fact there is a lawsuit against Johnson & Johnson alleging that Respiridal use caused gynecomastia, or enlargement of male breasts that can require surgery to correct, that is on going)
It is recommended that it NOT be given to children entering puberty. (My son is 11)
NO ONE IN THAILAND CAN UNDERSTAND WHY I WON’T GIVE THIS TO MY SON.
I’m not saying it won’t work, but I want to start somewhere lower on the list of medications. There are so many other options before we get there.
All this on top of a week of hours upon hour of rehearsal for a Christmas program that his school put on. There were about 10 kids in the actual play that obviously needed to rehearse. Every other child just needed to sing 1 song with their classmates, but was required to sit through hours and hours of the rehearsal. They were not allowed to do anything but sit. Not read, not draw, no talking. SIT.
But this is a skill they need to learn!
Tell me the last time you had to sit for 3 hours with nothing to do. No phone or tablet, no book, no talking, no magazine, no movie. Just sit and watch 10 kids rehearse a Christmas play.
I don’t believe it’s a skill anyone needs or will use in the future.
So all of these schedule changes and anxiety about sitting through hours and hours a day of boredom, loud sounds, kids yelling into microphones has my poor autistic child ticking like crazy. Coming home in tears overwhelmed and in pain. Crying because he doesn’t want to go to school the next morning.
The other night he was so dysregulated and nothing was helping. He just sat on my bed and cried, paced, held his head and rocked back and forth, finally he crawled under the ironing board in the dark and sat there in the fetal position. This isn’t normal.
I was proud of him for sticking it out and singing his song with his classmates, but at what cost? At intermission he came to me in tears and begged me to take him home. So we left.
Our life at home is miserable. Parenting an autistic child is so hard. I can’t even begin to describe the stress and anxiety, the tears and fears. It is the hardest thing I have ever done or ever will do in my lifetime.
I am out of patience and out of my mind. I used to really love Christmas time, but the past few years, I’m beginning to really dread it.
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