Celebrating Inchstones: EEG with pictures!

Friday, July 23, 2010

EEG with pictures!

This is waiting at Vandy before we got into a room. We had parked in the parking garage, walked across the street, peeked at the train display and waited for a room. He was border line freaking out at this point. He started fretting when we pulled in the garage. The wind blew him as we crossed the street. The train display was loud and several kids gathered around. I was afraid he'd get sick and no one would have "proof" of it! He did however giggle on the elevator on the way up, even though it stopped several times before hitting the 7th floor! He has NEVER laughed and usually screams! This should have been an indication that things weren't going to go as I had planned!

This is right after he got all the electrodes attached, wrapped and ready to test. There are no pictures of the hooking up cause I was doing the holding and despite his low muscle tone, he doesn't lack muscle strength, especially when held down and tortured! It was quite traumatic for him and he screamed like crazy but he never got sick! Again a sign this wasn't going to be as easy as I had hoped!

All that gauze is covering up this mess of wires! This was as he was getting unhooked but it really shows how many electrodes they use.

Asa's EEG and the video of him in bed! I felt like I was on candid camera!!

Again with the surprises! Asa was an eating machine!! He had all his Pedisure by mouth. He had applesauce, mashed potatoes and gravy, sliced carrots, juice, sugar cookie, Gerber crunchies and roll!!! Not all at once but this is more than he tries in a week!!! I was shocked and have lots of pictures of him eating!

A friend came to visit and instead of being cautious and jumpy, Asa was all about playing with Ms. Cheryl!! As she was talking about her grandson going to school, she used the word "bus" and Asa started doing the hand motions to Wheels on the Bus!!! I first "met" Cheryl on an online support group for families with hypotonic kids. We learned we were both from TN and had Drs. at Vandy. Soon Asa was diagnosised with mito and now her grandson, Bricen, is being tested. Bricen had this same test done earlier this month and saw Dr. K this month too!! I met Cheryl and Bricen in real life at a mito meeting earlier in this year! Now they are not only special online friends but real life friends as well! Thanks Cheryl for breaking up my night and playing with Asa!!!

Ready for bed in his little wifebeater and boxers!! Like a little man! He liked all those wires and made it fine all night with them at the top of his bed. I didn't let him play with them all night!

The whole test wasn't so bad though! He enjoyed hanging out in bed. He got new toys to play with from the Child Life lady.

This is right after the "startle"! Notice the stacking, slouching and droopy eyes. He was all drooly and gagging and I hooked him up to drain. (I didn't post a pic of that though! You're welcome!)

He got to get in a big bathtub to clean up! He still takes a bath in our kitchen sink to save my aching back but he did love being in a big tub! He was a splashing machine!!

He got all red face and droopy again when he fought getting out of the tub! Now he is clean(er) and ready to go home!!

I tried and tried to induce a startle on Thursday and then on Friday morning. I was doing everything I could think of to rattle him and he laughed!! He may have jumped but he always laughed!! I was loud, I slammed doors, I tickled and rough housed, I did everything I could think of!!!

So how did we finally get the startle? The neurologist came in with 6 or 7 other people (nurses, care partners, students, attendings). They came to startle him but before that even started he touched Asa's arm to examine him and Asa started screaming and getting rattlely! I was pretty sure that had done the trick but for good measure the neuro slammed the bathroom door! The others clapped (I think they were going for a unison clap but they missed!). Asa was definitely reacting but for safe measure, they repeated the whole thing again! Bathroom door slam, random clapping, loud talking and Asa screaming!! I mean SCREAMING!!! It worked! He calmed down and I laid him down and he went to sleep! They witnessed his whole workup and it wasn't a seizure!! It WAS NOT a seizure! I'm so glad they got a really good look at the whole episode and even more happy that it isn't seizure related. Woo Hoo!

Turns out the little guy freaks out about what most of us wouldn't notice as stimuli. Most of us aren't bothered by wind in our faces, noisy crowds, ice makers, yelling, new places. But Asa is bothered! Big time bothered. I'm relieved to know that it isn't harmful to him to have these episodes cause it is rather hard to avoid them all. Hopefully he was get better at adjusting to this world and these episodes will slowly go away. They have decreased but we have decreased his exposure too!

I'm glad we had the test done! I won't worry about him going to school as much. I'm sure he'll have many episodes in that environment! And Asa and I both kinda enjoyed our 2 days away from home. Since there was no majorly invasive stuff done to him, it was kinda like staying at a hotel! I ordered room service and watched TLC. Asa had a quiet room (mostly) and played with new toys. Someone brought me his Pedisure and meds and I gave them to him. I had a good visit that broke up some down time! Not so bad for a night and 2 days in this circumstance! I have NO desire to go back under other circumstances and no desire to go back for this test anytime soon!!!!

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Asa's story

Asa is the 4th and youngest in this family. We thought he'd come into this world and our lives would flow right along as it had the other 3 times we brought babies into this world.

We were wrong! After a normal pregnancy and delivery, Asa had to be sent to the NICU because he wasn't sucking, blood sugar dropping, floppy muscles, exaggerated startle reflex and jaundice.

He stayed 5 days were he learned to suck and eat enough to come home. He began nursing well but would scream in pain 30 minutes after each feeding. He had so much mucus and drooled so much. He had a terrible rash on his face. He wasn't making eye contact and was not hitting any milestones.

I kept taking him to the pediatrician but got nowhere until his 2 month checkup when he had only gained one pound since birth. That earned him an appt with a pediatric GI and a change to Neocate formula. Odd gasping spells and eye rolling got him into a pediatric neurologist before the GI appt. The neurologist (he was actually the head of the pediatric neurology dept) personally walked us over to the GI clinic and sat us in an exam room. That kinda makes you worry! That is when we really got the ball rolling. Asa was 3 months old.

At 4 months he was admitted to Vanderbilt Children's Hospital. He stayed 8 days and had a NG tube inserted so we could feed him directly into his stomach. He kept this for 2 months. Also during this time he had an EEG, CT scan, MRI, upper GI endoscopy with biopsy, flex sig, numerous blood tests, a genetics consult, and an ophthalmology consult and many other pokes and prods! So began our relationship with specialist!!

After 2 months on the NG tube, we removed it and tried to get Asa to eat enough to gain weight. He did OK for a little while but by 9 months old, he was fighting each feeding and not gaining weight despite being on Neocate formula at 30cal/oz. The decision was made to have a G-tube put in. The G-tube is a feeding tube that is inserted directly into Asa's belly. He can eat orally but won't so he gets feed into his belly.

Since he was going to have to be sedated for the surgery, it was agreed he should have a muscle biopsy at the same time. By 9 months he had finally began making eye contact. He smiled some but not very social. He was still very hypotonic (floppy) and didn't even have head control. Something was obviously going on with his muscles. All of his brain scans had been normal.

In Nov. 2008, when Asa was 13 months old, we found out the results of the muscle biopsy. Yes, it took 3+ months to get all of the results! He was diagnosed with Mitochondrial Myopathy. He is deficient in Complex IV for all of you medical junkies out there.

What this means is that his cells can't make enough energy to fuel his body....specifically for him, his muscles and GI system, that we know of. If his body has to burn energy to fight off infection, or a stress, then he looses energy in another system. Mito is a progressive disease with no treatment or cure. We try to keep him as healthy and happy as possible. We use the feeding tube to keep him feed so he doesn't have to struggle there. He takes numerous supplements and vitamins in the hope that they will keep him cells healthier. We check his eyes, hearing, heart, kidneys, liver, brain and lots of blood work yearly. Mito can affect any system so it is important to have baseline and watch for changes. He has a GI, neuro, geneticist, optometrist, ophthalmologist, cardiologist, developmental ped, regular ped and a mito specialist.

He gets OT, PT, speech/feeding and a home teacher weekly. He has some sensory issues with touch, sound, taste and texture. This plays into almost all areas of our lives! He is still very hypotonic but gained head control at just over a year (right after we started supplements!). He learned to sit when placed in a sitting position at 18 months. He still can't get into sitting alone. He learned to bottom scoot at just over 2. He does not crawl or walk.

He knows the signs for "moma", "daddy", "more" and "all done". He can show them when prompted but we are still waiting for him to initiate. He waves "bye-bye" and points all the time now. He loves to take a bath and water in general. He has a contagious laugh and can flash the most flirty grin ever!

We learned, with Asa, not take the small things for granted. Each smile, sound, word, bite or even trouble!! You just never know when they might not be so easy to come by or even if you'll have them at all!