Posts from the ‘Medical/Health’ Category

Preparing for the future

When I was with my ex-husband, Nick, and I had Gavin, his parents purchased life insurance for him. I didn’t understand why at the time. It seemed so morbid to me, preparing for your child’s possible demise. Then when Nick and I split and the policy was allowed to lapse and eventually close altogether, I began to thinking about insurance and life insurance in earnest.

When Rob and I moved in together, he made sure we both had at least a bit of life insurance. Of course, we had our car insurance, renter’s insurance and then the little private policies on the expensive electronics Rob loves so much. But life insurance? What was the deal? I would learn soon enough.

We had some very basic life insurance on each other; in case of something horrible. That way we’d at least have enough for a small service and that was good enough at the time. Then my health made a drastic turn for the worse. One doctor told me I was “24 with the body of an 89-year-old”. Life insurance was going to be next to impossible to get now! They require physicals; Rob and I both knew I wouldn’t pass one. Who wants to cover someone with Fibromyalgia, chronic migraines, GERD and IBS?

Then to make matters even more complicated, we ended up on public assistance again. With public assistance you aren’t permitted to have whole life insurance because you can draw money out against the policy. They view that money as cash. We needed the insurance but we needed to find decent coverage that fit all of our needs. It was a nightmare!

In the end, we manged to get our insurance agent to find something that worked for us and with us. Thank God!

Brought to you by your friends at America Life Quotes!

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Homeward Bound!

All survived! =)

No needles. No abnormalities on the x-ray or EKG.

Gavin was fantastic! And we’re going home! =D

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

~ Lizzeann

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.

The Dr. R list

Not to pop the “Emmett John said his 1st word” bubble of happiness; but Gavin and I are currently sitting in Dr. R’s waiting area, awaiting our turn to discuss his current possible psychotic break. To give you some insight as to where we current stand with Gavin and what concerns us most; here is the list of things I’m going to try and bring up in 15-20 minutes.

    Pattie believes 100% that Gavin is hearing voices.

    He’s become very, very easily agitated.

    He wakes up in the middle of the night to perform his “shows”, which are imaginary plays that he either physically acts out or plays in his head.

    He’s developing pretty bad facial ticks. When talks now he does so with his teeth bared, not clenched just bared.

    He’s started to do more stimming behaviors like finger flapping and hand waving.

    He’s hearing voices again and he frequently calls out to us to make sure we are talking to him and not “the others”.

    He’s unable to do simple tasks most of the time.

    His behavior is becoming more child-like, almost to the point of being a toddler.

    His speech and behavior are regressing again and I’m worried he might have the regressive form of Autism.

    His outbursts are becoming more aggressive – not toward anyone yet, just in general.

So there’s the list. We’re sitting here, still awaiting. Except there are twin teenage boys sitting here now eating McDonald’s for lunch, which is making it infinitely more difficult to sit here. =(

I’ll be sure to update when I’m done seeing Dr. R.

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

~ Lizzeann

Voices

I talked to Gavin last night and he admitted to me that he is hearing voices again.

He won’t tell me what they say. Only that they “tell me to do stuff but I’m the Boss, so I don’t have to listen to them”.

Pattie and Dr. R keep tossing around the idea of schizophrenia and schizo-effective disorder. It’s incredibly difficult to diagnose in a child Gavin’s age so for now; we wait while Gavin hears the voices of those who aren’t really there.

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

~ Lizzeann