The Amazing Owen
Home Account Search

Add A Comment :
Name :
Email :
URL :
        Remember Info?
Comment :

Captcha


Comments :
I'm sorry about the seizures returning and the poor little guy being backed up. With that said though, what an awesome video! His head really looks great. It is so amazing how quickly he learns new things.
Comment By Christie At 12/9/2009 7:24 AM
So glad to hear about the developmental strides Owen is making! But sorry to hear about the seizures and GI difficulties. Teagan has similar GI issues (with GERD for added fun) - her GI had us try reglan to help keep her system moving things along, but we decided to stop that since we were concerned about the long term effects. Has your GI ever suggested Reglan?
Comment By Melanie At 12/9/2009 8:16 AM
Seizures; such an ugly thing for both child and parent to experience. I wish there was no such thing! I really hope and pray that you can get it all figured out for Owen and he starts pooing. But moving onto the good news...Owen impresses me so much!! I felt like I was right there, cheering along watching Owen pull himself up!! That is amazing!!
Comment By Kristen At 12/9/2009 9:08 AM
I'm sorry to hear about the seizure and constipation... Poor little guy :( The other news is just thrilling though! The video was such a joy to watch - he must be so proud of himself!! And those x-rays showing how they pieced his skull together is CRAZY! Wow! I am so glad that you're able to know without a doubt that you made the right decision to go ahead with the surgery though - the progress he is making is AMAZING! Avery and I went to Mya's house on Saturday - I didn't get you email til after we got home! But we had a wonderful time anyway :)
Comment By Josephine At 12/9/2009 11:31 AM

Original Entry:
Downs and Ups

It has been a couple of weeks since my last update and a lot has happened both awesomely great and not so great. 

As always, we'll get the not so great parts out of the way first so that we can end bragging on all the progress he has made.  After three seizure-free months Owen finally had another one last week.  Owen has only ever had one of the TV-Classic, previously known as Grand Mal and more modernly relabeled tonic-clonic, shake and jerk all over the body seizures.  Instead Owen usually follows a pattern of vomiting, choking and then losing conciousness for a few hours.  In the past, before the Keppra, Diastat and home oxygen, Owen would also lose his ability to regulate his breathing right after he threw up - which would land us in the ER with a breathing tube.  The Keppra is an anti-seizure med that he takes twice a day that is supposed to prevent the seizure from happening.  The Diastat is an emergency anti-seizure med that you give after a seizure starts. 

So, last Tuesday (December 1st for my record keeping) he was coming home from school and Tessa heard him choking in the car seat.  She pulled over and hit him on the back to clear his airway and he started breathing again just fine, but he then lost conciousness.  She was only about a mile from the house so she brought him here and we hooked him up to the pulse-ox. (BIG Kudos to Tessa for quick thinking) His oxygen was fine, but he wouldn't wake up for anything so we gave him the Diastat.  Now the general idea with the Diastat is that you give it to him if a seizure lasts more than 5 minutes, then wait five more minutes and administer it again if he is still seizing.  The problem is that Diastat puts him to sleep, and so does the seizure so I'm not sure how you're supposed to know if you should give him the second dose.  However after the first dose his reflexes were more responsive so we didn't give him the second one. 

He was being monitored on the pulse-ox the whole time and his vitals were perfectly stable so we just called the neurologist's office instead of 911 (per the neurologist's instructions).  He said that it's normal after this type of seizure to sleep 2 to 3 hours and to call him back if he didn't wake up in that amount of time.  After two and a half hours he woke up and started signing for food as if nothing had happened.  The neurologist upped the Keppra dose to 2 ml twice a day from 1 ml twice a day. 

Which brings us to problem #2 - Owen's GI tract.  There have been many discussions of poo on this blog and I suspect there will be many more. As I figure this blog is mostly an educational tool, I tend to describe the situation more than I would in polite company. It's honestly Owen's biggest problem and has held him back more than anything else.  Constipation is very common in kids with hydrocephalus partly because they have limited mobility and so don't stretch out the body and spend as much time upright as other people.  There can also be muscle tone issues inside as well as out.  We have been battling the poo wars since Owen started solid food.  A few weeks ago he was fed some bananas at school - we had never thought to put that on the list of banned foods because he isn't allergic to them (like he is to everything with milk or eggs).  But they do have the effect of stopping up the whole works and that they did.  After several days of enemas and massive doses of Miralax we did finally get things moving again, but only for a day or two.

Since then he hasn't been able to produce anything on his own without the help of an enema.  The worst is that this is an incredibly painful situation for Owen.  He cramps and then just cries and cries...it's really quite painful to watch for Mommy and Daddy.  And when you are in pain you don't want to do therapy or anything at all.  We are somewhat worried that it might be the increased dose of Keppra that may be doing it - since that is a known side effect.  When we were down at Duke yesterday for a CT (that will be covered in the good news section) we also had them do a shunt series - which is a series of x-rays that shows the entire shunt tract, and also incidentally shows the entire GI tract.  I sent those images to Owen's GI doctor today and he should get them tomorrow to tell us what he sees and what we can do. 

OK, so onto the good stuff!

Yesterday we took Owen down to Duke for his follow-up CT scan from the big surgery.  And the good news is that his current shunt is keeping things nice and stable!  There is no need to have a shunt revision!!!  And a few more !!!!!  As a parent, the worst fear is that you will make a decision that will somehow make your child's situation worse than it was and that was certainly a possibility with this surgery.  It is an incredible relief to know that all is well inside his head - and with all of the progress he has been making with his mobility we are completely sure now that we made the right decision.  So we have a lot of !!!!'s about the way that this has all turned out. 

The CT scans look just about the same as the ones that were taken right after the surgery, so there isn't anything new to post there.  The shunt series though did have two interesting x-ray images that I thought were worth sharing.  They show the lines in his skull where they took apart the bone and put it back together. 

shuntseries-side.jpg

shuntseries-front.jpg

The big circle with the dot in the middle attached to a bunch of electronics is Owen's cochlear implant.  The other wirey thing across the top of his head is the shunt.  You can see how they pieced everything back together. 

And now for the benefit of all this surgery.  Owen's mobility has just increased by so much.  The other day he was sitting on the floor next to me, next to the couch.  He saw a toy that he wanted which was sitting on the couch.   He turned around, pulled himself up and grabbed the toy as easy as could be.  He has done this many times since.  I did get a video of one of his attempts.  This isn't one of his more graceful attempts, but it is the one that I managed to catch:

ImageStandIn


Owen's vocalizations have really improved too.  He's saying "na na na na" for no now.  And he is saying "da da da da".  He did not have either of these sounds until after the surgery.  And he is putting them together with all of the sounds he had before to make much more complex "words". 

Owen can now transition from a sit to a crawl without falling over almost every time now.  This is huge because it means we might actually be able to let him sit by himself soon without needing to be right next to him the whole time.  I'm going to try to get a video of that manuever soon.

So, all in all, it's going quite well.  We couldn't be more pleased with his recent progress.  I'll close with a picture of Owen and his sister checking out the train that goes around the Christmas tree:

2009-11-28-0008.JPG

 
 
 



Legal Disclaimer: While every effort has been made to make certain that the information contained in this website is accurate, it must be remembered that the content is managed by a parent, not by a doctor. Information contained here is for general support purposes only and is no substitute for the care of a physician.