one day at a time . . .

{nurses office: home away from home}

Just another photo to add to my collection. Well, we tried to make it a full day of school. He was pukey this morning, pale and with another tummy ache. I was just thrilled to get him dressed and in the car. Jack had a substitute teacher today and she had NO idea who he was or what his "issues" are so she just stared blankly as I tried to explain why he looks the way he does. So I prepared the nurse and told her I didn't think he would stay long and to call me when he fell asleep.

I did finally get a call from Jacks Mito Dr. about his EEG results. There really wasn't any surprises. He said that the results showed he was either having seizures already or he was very likely going to have them in the future. Basically his 40 min. EEG looked like a child with Epilepsy.

These are the results;

Background:
1) The best awake state contains a posterior, regular and poorly modulated, 20-100 microvolt, 8-9 Hz rhythm.

2) Admixed frequencies 20-80 microvolt, 3-7 Hz activity that is diffuse and irregular.

Sleep:
The record included drowsiness and light Non-Rapid Eye Movement (formerly stage 2) sleep. This was evidenced by vertex sharp waves, sleep spindles and clinical manisfestations. During drowsiness and sleep there was an increase in the epileptiform discharges described below. They were only present during drowsiness and sleep.

Elileptiform:
Elileptiform discharges are rare, spike and polyspike with and without after-going slow waves. Their distribution is bifrontally predominant and generalized. They are present singly and in runs with frequency of 3 to 4 Hz and last up to 1 seconds.

Interpretation: ABNORMAL EEG due to:
1. Generalized epilepticform discharges
2. Background: Moderate background slowing for age.

Clinical Correlation:
This EEG is diagnostic of a risk for seizures, generalized seizures and an encephalopathy that can arise from a number of acute and chronic etiologies. Clinical correlation is recommended.

And then theres that word added at the end of the report...

ENCEPHALOPATHY.

(Encephalopathy is a term that means brain disease, damage, or malfunction. Encephalopathy can present a very broad spectrum of symptoms that range from mild, such as some memory loss or subtle personality changes, to severe, such as dementia, seizures, coma or death. In general, encephalopathy is manifested by an altered mental state that is sometimes accompanied by physical manifestations (for example, poor coordination of limb movements).

Until now, this word has never been attached to any of Jacks medical records. Yes I know, its there but it could mean very little...but its there now where its never been before, so it means something to me...because

"brain disease, damage, or malfunction?"   that cant be describing our boy...

But like everything Ive been told about our sons health over the years ...ok its there, calm down, get use to it, move on and continue to take one day at a time. So thats what we do.

SO because of these abnormal results Dr. S. wants Jack to have another EEG, but much longer this time. So next month he is scheduled for a 24hr. inpatient VEEG, all this mean is there will be a Video to monitor him the entire stay to help determine any events they catch. However, its unlikely an event will be caught even for these longer EEG's. But it still might give us more information of what type he's having or at risk of developing.

So thats that, its been a tough week for me.

Cardiology and more blood drawn is this Thursday, praying we don't get anymore bad news.

Could you do me a favor?

There is another little boy with MITO that needs our extra prayers. His name is CALVIN, he's just 3 yrs old and so stinkin' cute just like his 2 siblings. His family actually doesn't live far from me and he see's Dr. S as well.

Cal recently started to have seizures, now having them very frequently. He is struggling a lot now and doesn't sleep most nights. His Mom Tricia has to rock him each night just so he can get some rest. Having to watch their sons disease progress before their eyes has been more than devastating for the whole family.

PLEASE put in an extra prayer for Cal and his family as they continue to seek GODS love and guidance over their beautiful boy. Mito is such a cruel disease, often taking a little bit from our child each day.

PRAY for a CURE for CAL

and all our littleones battling this disease.