Wednesday, October 10, 2007

The MRI story...



Beep beep beep....the alarm goes off.
It is 6am and time to leave for my son's brain MRI.
Exciting stuff, only, not so much. Sigh

I get everything ready and at about 6:40am change my son while he is still sleeping and carry him to the car. In his sleep haze he asks for his ABC music cd. Never misses a moment does he? So cute.We arrive to the empty parking lot and go into the waiting room. We sign in and wait for someone to come out with instructions. Once she does, we fill out all the necessary paper work and into another room we go.This one with all sorts of electronics and buttons my son wanted to touch. He did not know what to do so he just paced back and forth and all around checking out all of the equipment.

I hand the nurse the list of the 15 supplements and vitamins my son takes to make sure there is no adverse reaction to anything they will administer when combined with these.I get the usual questions as to why we use spironolactone and why do we give him this and that. I had my binder with me so this time I was able to give perfect answers. The 2 nurses and the technician all look at me like most people look at me when I talk about bio med intervention;wondering if I have lost all my marbles. I assure them my marbles are great, all there and shiny too! But really, I explain that we see one of the top DAN docs and that at some point we have to trust someone to help our child move along. One questions if we vaccinate, I answered him that we used to.

They attempt to take my son's vitals but as usual, other than weighing him in (39lbs!) they can't get anything done without him screaming and fighting them all. To administer the versed to calm him down it took 3 people to pin him down to the bed and a bed strap to get it done. The nurse slowly administered it with a syringe in his mouth. Not so fun what you get used to doing these days. The second time to pin him down was to apply the i.v. That was another session of adults pinning down my little boy. He kept screaming using all of the words he knows to make us stop: "all done, bye bye, stop, stop it". Completely heartbreaking. By now, the versed was taking over and he started to get groggy though not nearly as much as he needed to be. They wrapped a diaper around his hand to prevent him from pulling the iv off and my husband carried him outside. They have this huge trailer with the MRI machine inside. A big, scary, intimidating machine. My husband placed him on the bed and kept a tight hug grip while they administered the next drug:Nembutal. They had 4 individual doses of which he ended up requiring only 2. They give them one at a time and save some in case the kids wake up during the procedure. What a thought.

It was frightening but in a weird way cute to see him fight but then slowly give in to the drug because it was like he was drunk. He kept talking slowly and slurring all speech. My sweet boy. He finally fell asleep and they laid him down and strapped him in. They put a sheet over him to make sure he was not cold and asked us to wait in the front lobby. I thought the time would go by slow but it thankfully did not. Before we knew it, 30 minutes later, we were called in to the recovery room. He laid there out of it completely in sleepy land. The nurse administered 180cc's of i.v. saline fluid to push the drugs out of his system. He slept through all of it. After getting him to drink 3 ounces of water, he was released.

My husband carried to the car and buckled him in. Luckily it was only a 12 minute ride. Because he was so out of it, his head was completely bobbed down most of the ride home. We got there and carried him into bed. I got prepared for a 6 hour period of laying in bed with him as he came out of it. Boy was I wrong! 10 minutes after we arrived he bolted up on the bed and attempted to jump off and run to his room like he usually does except he had no strength in his legs and arms yet and we had to keep holding him off as he fought us off because in his mind, he was strong enough. The nurse told us this would happen but I had no idea it would be so bad. By the end of 20 minutes he was back to his old self! well, his old self..just a little drunk looking. The next 2 hours proved challenging as he did not want to be shadowed and insisted on running all over the house. He fell twice but luckily nothing bad, just slip and slides. I was completely exhausted. Once we knew he was not wobbly anymore, we finally let him be. Completely exhausted I tell ya.

I wanted to note 2 things that happened almost right after we got home. As I carried him to the playroom floor and was lowering him to the floor, he looked at me with his sleepy eyes and said "Hello, hello mommy". Huh? this is huge! he has never greeted me. The extent of him greeting me is usually a big grin and running towards me. This time, he deliberately made eye contact and greeted me. I was in shock. I said "Hi baby, how are you? how do you feel?" but of course, no answer. He was in and out of his world and the drug world that he still had in his body. Minutes later he noticed the bandage on his hand from the i.v. Usually, he calls bandages "stickers" and he is terrified of them. Taking one off means more pinning down or letting them fall off on their own. This time, he noticed, looked at it and slowly draped his arm over my leg followed by grabbing my hand with the bandage free one to signal me to take it off. I did, thinking he would pull his hand back and he did not. In fact, when I finally peeled it off, he felt the area where it was like he was now relieved it was gone. mystery number # 2. Why the sudden lucid moments? was it the i.v. ? did that liquid running through his body help in any way? was it just coincidence? am I over analyzing this? I think there was a 3rd one, but cannot recall right now. Mommy brain.

At around 4pm, the phone rang. They called to say the MRI results were normal. Really? normal? That was it. A 15 second call for results. I wish I could sit there with the neurologist and scan every inch of that MRI. I fear they just see this as routine , scan it briefly and push them aside. Not that I want something to be wrong but it seems so casual that a brief phone call ends the entire MRI issue. I have requested copies on disc to perhaps get a second opinion. I have heard of some of the white matter on the mri's signaling metal toxicity. Will have to look into this. Can't ask the neurologist because he says he does not believe in magic, as in , don't come to me with any other theories that are not ABA, ST and OT intervention related.

So on with our detective work in the search for my baby's recovery.

Just this afternoon while in the car, he pointed to the DVD screen where the Care Bears movie was playing. He rarely points. could this be another gain?

Up next, DMSA chelation suppositories begin.

4 comments:

GFCF Mommy said...

I'm glad it's over. Your post brought back a lot of memories for me, not necessarily good. We did our MRI and also the EEG (do you have to do that too? I think we had to only since Eric had had a seizure). We did ours at Joe DiMaggio. It was a child-friendly environment, as much as such a situation can be, which is not very!

I remember having to hold my baby's head still while he screamed and the nurse practically laid on top of him to squirt the stuff down his throat. Keith was so traumatized that he had to leave the room. At least your man hung in there! I don't blame him though, it's so hard to watch them.

Interesting about the lucid moments. I think I told you, my Prince has these when he has a really high fever. It's like he is a different child. Makes you wonder what it is.

Anyway, I am glad that's done and you can move on. Also, have you ever heard of anyon getting an abnormal MRI or EEG? I'm sure some kids do. Wonder what the stats are?

Katherine

Queenbee said...

Thanks! maybe not abnormal but I have read comments on the brain size being smaller and some other stuff I can't recall right now as well as the white matter being metal toxicity etc.

I have also read about the high fever moments online. I read somewhere about patients in a hospital with severe autism getting up and walking out casually during a fire and saving others! wow! I do wonder what it's all about.

Thomas Dzomba said...

We had an MRI done on Helena. The neurologist called the results inconclusive, and basically blew off giving an MRI to a 4 year old. The money hungry developmental pediatrician called it signs of seizures, due to the white matter. Who are we to believe?

I would definitely get a second opinion - maybe your DAN doctor can recommend someone?

I too have heard of the lucid moments, and in fact way back when we lived in Georgia we could see them in Helena just before she got sick. Helena has made a lot of developmental improvements since then, and now there it is hard to distinguish them.

Thomas

mammajess said...

I just found your blog. My 4 year old son has autism and will be having his first MRI very soon. He used to be a pretty bad head banger. When he was about two and a half, he knocked him self silly. At the time he was mostly nonverbal and had very little eye contact. I took him into the ER. They gave him an oral sedative in hopes of doing a CT. He would not fall asleep but, he started talking some. He touched my eyes and said "eyes". He also requested a "tissue" and "water". Those were all firsts. I have also wondered about this. It does seem odd.