Two steps forward- Five steps back

It has been a ROUGH past week to say the least. We have gotten to the point where we can no longer take Annie out in public. Last sunday, we attempted to do a family outing that consisted of going to a pumkpin patch. We left about 15 minutes after arriving. Annie had a pretty severe meltdown. Little did we know we would end up at Children's ER later that week and that these meltdowns would become so severe that we had no option but to go to the ER.

Annie began having very scary screaming/crying episodes. Not just screaming like a normal tantrum. I mean scary screaming. I hate to even say it, but it looked like she was possessed. This happened all throughout the week, getting worse by the end of the week. Thursday I received news from her developmental pediatrician that her Lactic acid came back high. This is worrisome. It means her little body is acidic for some reason. Could be some kind of metabolic disorder. Which, of course, we don't know yet without more labs. She said she wanted me to go back to the hospital to get a liver profile (to check liver function), amino acids, ammonia, and another lactic acid. It worries me she might have a mitochondrial disorder. We pray thats not the case.

Friday morning, I decided to head to CCHMC lab to get the blood. However, that morning, she began one of these "episodes" and she displayed a new symptom of banging her head against the wall. This is altogether heartbreaking to see your child so miserable that she has to bang her head to take the attention away from what she is trying to deal with. This lasted for 2 1/2 hours. I decided to take her to the ER. I couldn't take it anymore. Who knows what it could be. Is she in pain? Does she have a psyciatric problem? WHAT?!!??  I tried to figure out what we had done with diet or supplements or ANYTHING to cause her to act this way. I came up with nothing. I had decided to catch some of these episodes on tape so I could prove to doctors she really was having problems. Off to the ER.

I explained to every doctor and nurse everything we had witnessed. Showed them the tape, and of course, their eyes got bigger and bigger. They had a psychiatric social worker come in and evaluate Annie. She suggested we might have to put her in Children's psychiatric inpatient program to iron things out. Another sucker-punch to the stomach. THAT was a low-blow. I actually felt like an elephant was sitting on my chest. I kept looking at the social worker and back at my mom. My mind was racing all over again. Everytime you hear something like this, its like the dreams of what you want for your child die all over again. And I began to cry. Again. I said I wanted to hold off on admitting her. At this time, my gut was screaming no at me. I listen to my gut feeling because I really believe God is putting it there. Its been right every other time.

I talked to another doctor and he brought up her history of severe constipation. As almost ALL children with an autism spectrum disorder has bowel dysfunction also. But then again, I wouldn't expect mainstream pediatricians to know this. We have been on Miralax for about a year and a half. Along with every anti-constipation remedy out there. With no success. We did a belly x-ray and it showed her intestines were completely full of stool, even  though she has 2- 3 bowel movements a day. CCHMC suggestion? To clean her out with miralax. As if I hadn't done this A MILLION and one times. I asked them how to deal with this long term seeing as how it comes back EVERY TIME and with a vengeance that's always worse than the time before. The doctor had no answer. How do I potty train this child with severe bowel issues? Again, no answer. No help. Why did I expect anything different? We are really hoping these episodes are because she was in alot of pain. The social worker ended with if she continues to be like this, that I should call her back and have Annie admitted. Thanks.

Next call is to Dr. Demio (her DAN! dr.) this thursday and explain our situation and seek his expertise. He is wonderful and wish he would move to cincinnati. :)

Now I am waiting. Yet again. Waiting for labs. Waiting for a resolution. Waiting for an answer and fighting the system. I have already called another state program which Annie qualifies for. It would provide another therapist. The program is to help stabalize children with emotional and mental disturbances and keep them out of an institution/hospital. I have a meeting tomorrow morning with a social worker concerning this. I hope THIS state program can help us. I close with a song I have listened to over and over this past weekend.

Kutless

I'm Still Yours

If You washed away my vanity
If You took away my words
If all my world was swept away
Would You be enough for me?
Would my beating heart still sing?

If I lost it all
Would my hands stay lifted
To the God who gives and takes away

If You take it all
This life You've given
Still my heart will sing to You

When my life is not what I expected
The plans I made have failed
When there's nothing left to steal me away
Will You be enough for me?
Will my broken heart still sing?

If I lost it all
Would my hands stay lifted
To the God who gives
And takes away

If You take it all
This life You've given
Still my heart
Will sing to You

Even if You take it all away
You’ll never let me go
Take it all away
But I still know

That I'm Yours
I'm still Yours

Oh, I'm Yours
I'm still Yours
I'm still Yours