Posts tagged ‘Asperger’s’

New Poll! Opinions greatly appreciated!

I’ve added a poll to the right side of my blog asking for your thoughts and opinions about adding blog posts written for cash to my daily updates etc. It’s a good opportunity for me to help out my family and help pay the mounting bills for all things new and special that the boys are needing (like more diapers for Emmett John since he’s refusing to wear any of the diapers unless they have Cookie Monster on them!). I just want to make sure it’s the right thing for my blog because it’s become one of my babies as well.

So if you would be so kind as to offer up your opinions; I’d really appreciate it. =)

Slowly moving forward

He’s been taken for his chest x-ray, which Gavin found super cool because they were able to show him the x-ray images.

Then they came and performed his EKG, which Gavin didn’t mind because he could keep watching Total Drama Island. He wasn’t too keen on the stickers though.

The nurse didn’t say anything about them so I don’t know where we stand on their results.

I’ll update more later, when I have more to give.

* posted on the fly w/o the use of proper editing tools 😉 *

~ Lizzeann

Please pray!

Gavin has been having chest pain the past few days. I’ve been trying to get him in with Dr. VK but until them but in the mean time, Rob and I decided to take him to the local Children’s ER.

That’s where we are now. Waiting in his room. While the ER as a whole begins a “Code Yellow” disaster drill. Great timing, huh?

As it stands at 740P his stats are:

BP: 97/65
Temp: 36.6C
Pulse Ox: 98%
Pulse: 80bpm
Weight: 75.6lb

I’ll update as I know more.

Please keep Gavin in your prayers. Oh, and the doctor and the nurses and Rob and I because this has the potential to be a very combative evening.

* posted on the fly w/o the use of proper editing tools 😉 *

~ Lizzeann

The appointment

I’m sitting here while Dr. R talks to Gavin. Trying to hide behind the invisible wall that excludes me from the conversation since I’m “Mom” and therefore embarrassing. This is where we are so far:

  • He has tremors that are caused by the Seroquel. They are not familial tremors like I have; I asked.
  • He’s talking about the voices now. He hears the voices through his ears. There are a lot of them. Dr. R agrees with Pattie that he is 100% hearing the voices, which makes this a form of psychosis.
  • He isn’t sleeping very well at night. He’s been waking up at midnight, 2AM, 4AM and 5AM when he just stays awake. At 5AM he begins to perform his shows.
  • The facial tics are called tardive dyscanesia. They are an independent medical thing, completely separate from everything else. They can become permanent but Gavin’s are not permanent now.
  • At this moment in time Gavin’s is diagnosed with Bipolar – Mania with Psychosis. Dr. R said that there is a spectrum (I’ve learned to hate spectrums.) of Bipolar and schizophrenia. It looks something like this (imagine it’s on a line):

BipolarBipolar w/Mania & PsychosisSchizoaffective DisorderSchizophrenia

Right now, Gavin falls on the Bipolar & Bipolar w/Mania & Psychosis side, which basically means he’s so manic that he’s had a psychotic break of sorts. Dr. R said it is impossible to diagnose Schizoaffective Disorder in a child Gavin’s age. Although it may become evident in the future that is what he in fact has. Only time will tell.

  • The anti-psychotic is making the facial tics worse and will likely continue to do so. However, it is absolutely a necessary evil now. We need to bring him out of the Manic mood that he is currently in and the only way to accomplish that goal. Once he is no longer manic and psychotic it is our hope that the Lithium (I’m getting there.) will be able to stabilize him and his moods.
  • His mouth movements – baring his teeth while he talks, stretching his lips out while he talks to expose his gums etc. are the tardive dyscanesia and not stimming behaviors with the Autism. Having the tardive dyscanesia complicate the issues as a whole because it makes choosing an anti-psychotic much more difficult. Ideally we would be able to find one that works and doesn’t cause the tardive dyscanesia since it can eventually become permanent; however, that isn’t the case and we’re forced to work with what we’ve got.
  • The wiggling of his fingers and flapping of his arms are part of the Autism. Dr. R said he has become anxious to the point of developing more stimming behaviors.
  • We are rapidly running out of antipsychotics to try, which combined with his tardive dyscanesia makes things even more difficult. In the end, if all other antipsychotics fail there is one left. It’s called Clozapine (or Clozaril) and Dr. R said it is “the Atom Bomb of antipsychotics”. The problem with Clozapine is that it is associated with agranulocytosis, which is the turning/killing off of the white blood cells. When Europe began using it they didn’t keep track of the patients white blood cell count and 14 or 15 patients died. Ever since the US approved it, it has been the most tightly controlled medication of all the medications available in the US. A patient is only given a 7 day supply at a time at first because they must have a blood draw to check their white blood cell count. Only after the pharmacy receives the results of the blood draw will they dispense the next 7 days supply. Eventually the blood draws are spaced at 2 weeks, 3 weeks and finally 4 weeks for the duration of the usage. Thankfully, Dr. R said we are not at a point where this medication is necessary.

And finally, here is the plan going forward for now:

  1. We are slowly weaning Gavin off the Depakote and eventually removing it altogether.
  2. Starting today we are increasing his Seroquel.
  3. Adding Lithium to replace the Depakote.
  4. Adding Cogentin, which is supposed to help with the facial tics.

That’s the entire appointment from start to finish. We start changing his medications around and then return to see Dr. R again next Wednesday. Here’s to hoping this works because I’d really like to avoid the Clozapine if at all possible.

Shoes!

Emmett John currently has a very strong love affair going on with his shoes. Yes, you read that correctly, I said his shoes.

At first, he wore them if he had to but he was clumsy and didn’t like them very much. Then out of nowhere he became absolutely obsessed with his shoes. He wanted to wear them when ever Rob or I had our shoes on or if he saw Gavin or Elliott Richard putting their shoes on. Now, the rest of us could be barefoot (something that doesn’t happen in our house – ever) and Mr. Emmett John would still have his socks and shoes on. He even wears them to sleep in.

Seriously, the other night I fell asleep while getting him asleep. Then at around 1AM he kicked me and I figured enough was enough. He was deep asleep enough that I thought I could remove them without problems.

Wrong!

I was able to get his right shoe and sock and his left shoe off before he woke up in a screaming, arm-flailing rage! He laid there screaming and smacking his feet while he flailed. Once I put his sock and shoes back on him, he passed out as if he’d never been awake.

And let us not forget last night, his two-hour screaming jag all because he wanted his socks and shoes on but couldn’t adequately communicate it to me.

I don’t know if this obsession is an Autism/Aspergers/PDD (Pervasive Developmental Disorder) obsession or if it falls under the category of Sensory Integration Disorder. I can tell you that these Lightning McQueen light-up Wal*Mart shoes aren’t going to last much longer if he keeps loving them as much as he is. (lol)

* posted on the fly w/o the use of proper editing tools 😉 *

~ Lizzeann

Not Me Monday

I’m late and the list at McMama’s blog will be horribly long but this is too good not to post.

This week I most certainly did not use a tiny cotton tampon (freshly opened!) to apply calamine lotion to Elliott Richard’s “itchies” (otherwise known as bug bites) since we were out of cotton balls. No, Not Me! That would be inappropriate, slightly awkward (in explaining what it is) and totally weird-out Rob. So I most definitely did not do it. 😉

The corneal abrasion

My morning began with Mr. Emmett John waking up and refusing to go back to sleep at 4AM. Finally, at 6:30-7AM, when I couldn’t keep my eyes open any longer, I handed Emmett John over to Rob and went back to bed. Yeah, that was short lived.

When 8AM rolled around all too quickly Elliott Richard woke me up saying that Gavin had “poked himself in the eye”. I couldn’t hear the screaming yet and also couldn’t figure out why Rob needed me to help with this slight injury.

Turns out Gavin and Elliott Richard were playing in the Play Room and Gavin went digging through the Toy Box. Somehow in his enthusiasm he didn’t notice the piece of plastic race track sticking out of the Toy Box.

In he dove.

The track raced up to meet him, square in his right eye.

And the screaming, flailing and blind (literally) swinging punches began.

When I got downstairs Gavin was on the stairs to try and limit his ability to harm himself or others with his blind flailing and swinging. He had also rubbed his eye to the point of making his whole eyelid pink and extremely swollen. Every time we tried to get his eye open to survey the damage, it triggered another round of screaming, flailing and blind swinging. Not to mention, although clearly I am, the high-pitched, ear-splitting, migraine inducing (seriously, he gave me a migraine that I can’t get rid of) screeching. When he finally allowed me to look at his eye it appeared to me that he had a long corneal abrasion/scratch. It looked nasty. That was the point we decided to go to the Children’s Hospital over waiting to see Dr. H tomorrow.

So I woke my sister up at 8-ish AM on the 4th of July to ask beg her to go with me since it was very likely that restraint in some form was going to be necessary. Plus, with Grandma and Pa-Pa G in Michigan for a wedding someone had to sit with the Boys. So Trisha went with me because she is far more entertaining than Rob in these situations. 😉

The ER at the Children’s Hospital got us back right away and they were really kind to Gavin right off the bat. We had a bit of a wait once in the room because there was a little kid with some pretty serious injuries that needed to be tended to. And Gavin screamed and screeched nearly the whole time!

Then there were moments when the drama was about knee deep or more. I don’t say that to be mean but I about died when he threw his hand out with his snotty tissue between his fingers like it was toxic and said, “Can someone please throw this away for me because I can’t see?” Of course, he failed to notice that he couldn’t see because his eyes were squeezed shut about as tight as possible. (lol)

Once the doctor came in, the screaming and screeching increased but we also got some answers and treatment. So it was a pretty even trade-off. He peeked at Gavin’s eye and said he could see the abrasion with his naked eye. He also said if you can see a corneal abrasion with your naked eye, it’s pretty bad! Then he numbed up Gavin’s eye, put in some dye so he could see the full extent of the abrasion and some other eye drops which he said were like Neosporin for his eye.

Gavin's corneal abrasion

When he put the dye in and used his pocket black light to look at his eye and see the extent of the damage – how large and deep – he allowed Trisha and I too see. It’s big! Even the doctor said it was pretty big. It’s about the size and almost the shape of an eraser at the end of a pencil (in real life, not the size of that one on the left lol).

Gavin was discharged with eye drops and a prescription for Tylenol 3 for the pain. The doctor said that regular Tylenol would help but for an abrasion as bad as Gavin’s he would recommend the Tylenol 3. So, Tylenol 3 it is.

Once he was discharged we made it for home. Now that Gavin has had his medications, he’s been asleep since just after we got home. Unfortunately, Gavin’s screaming and screeching gave me a horrible migraine but Emmett John’s screaming and screeching keep feeding it. And I don’t get to go back to bed, which is incredibly unfair if you ask me. 😉