Tuesday, October 22, 2013

ABC's of Autism - M

M.  M, I was thinking today.  M is for Mike, who is Anthony's excellent father.  If your child gets an autism diagnosis, look across the dinner table at your partner or spouse and if it's not a super tough and honest individual who would do anything for his or her family, well let's just say I hope it is.  It is a tough and long road but I feel very lucky that I am married to someone like Mike, who is smart and reassuring and has a great sense of humor and makes our lives not just easier but great.  But I'm not talking about Mike for M, I decided.  Then I thought maybe Miracle.  Or Magic.  So often when things go well with us, it feels like a miracle, it feels like magic.  The other night we were all up in the girls' room before bed and Mike was taking Anthony into his room so I said good night and went to kiss him and Anthony leaned in for a kiss, and it was like magic.  Mike and I were laughing and giggling and so amazed.  Three days in a row, this week, Anthony has sauntered into the bathroom and sat down and pooped on the toilet.  Miracle.  Magic.

But I'm not talking about THOSE words either.  The word I'm using for M is Medicine.  Anthony was diagnosed with epilepsy this week.  We went to see a pediatric neurologist after he had three episodes that we thought were seizures.  As soon as I started looking into it, I looked into vomit and autism and poof! I read that 30-40% of kids with autism developed autism AND it was very common among non verbal kids with autism AND it usually happened during pre adolescence.  I mean, it was everywhere and as I called around to his developmental pediatrician and talked to the nurse there, and as I talked to other parents, everyone, everyone was nodding their heads, yes of course it sounds like seizures, they said.  This makes me really mad, I mean, it's one thing that no one will treat us medically for autism, but could we not treat actual MEDICAL conditions medically?  Do I have to do EVERYTHING?  SHEESH!

I asked for recommendations for pediatric neurologists and then I asked our pediatrician for a referral and he got us in with this guy who a lot of other people had recommended, so that was good.  He was very nice, the doctor, and he said that once a person has two seizures, they call it epilepsy.  Anthony had an EEG, which came back perfectly good, which the doctor says happens half the time.  So now Anthony is taking ... some medication and I forget the name of it, but the doctor said one of the side effects is that it can have a relaxing effect, which, um, okay!  It was funny, Anthony was ON FIRE the day that I took him to meet this doctor.  He turned on the sink 40 times, he was climbing up in the window, literally climbing the walls, tearing the paper off the table, just nuts.  So when we were talking about medication the doctor said this one had a relaxing effect and maybe that would be okay?  Mom?  Ha!

He's only taking it since Sunday, and sometimes I think *I* am going to have a seizure when I am trying to give him the medicine in the morning, but so far, so good.  Everyone keeps saying how SORRY they are and OH NO what will we do?, but I am fine and I think Anthony is too.  I told my brother yesterday, I am relieved to have a medical condition that can be treated medically.  It's not like I took him to the neurologist and the guy told me, yes he has epilepsy and good luck, figure it out.  I feel like I have some guidance and care for the first time since we have had Anthony's diagnosis.  So, onward and upward!

1 comment:

Linda Atwell said...

Love your M words, including magic and miracle, but especially Mike since he sounds awesome in his support.

I totally understand where you are coming from in Medicine. My daughter didn't have a "real" diagnosis. She did have seizures and the EEG's had mixed results. One leaned toward epilepsy, the other against it. However she was given phenobarbital to take until she was seizure free for a year. I too was glad we finally had something to work with. It sounds like you and your family are doing great.

Found you on Love That Max today. Am signing with my blog name since your's only allows me to sign in with google. :-) http://outoneear.com