The Amazing Owen
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Merry Christmas and Goodbye Keppra
Firstly Owen enjoyed a lovely Christmas with our family up in New York.  For those kind souls that have asked about my father-in-law, we had a wonderful Christmas present in that he was able to come home the week before Christmas.  He has made a tremendous amount of progress since his stroke.  He is able to walk on his own, feed himself and to speak clearly when he concentrates. As such he was able to join us for our Christmas dinner.  For info on Owen's Christmas and to see my father-in-law at dinner you can check out our family blog here.

Secondly there is the Keppra issue.  In past posts I talked about the rage that it seemed to be causing in Owen.  The neurologist had suggested giving Owen vitamin B6 to help with this.  At first it did seem to help.  In the previous two months I couldn't really point to a day where we could say that Owen was in a good mood for more than a few minutes at a time.  After starting the B6 Owen's mood definitely improved.  We would get two or three days in a row where he was in a fabulous mood and back to his old self. 

The problem was that we would then experience a day that was worse than any we had ever had before.  At one point he was so upset that he bit his arm until it was covered in bruises.  Trying to restrain him only bruised him more - Owen is incredibly strong. His face and legs were scratched from his thrashing around. In the end we gave him a dose of Benedryl to knock him out and called the neurologist.  We decided that even though we were having more good days, the bad ones were just getting too dangerous.  The neurologist changed Owen's medication to Trileptal.  Unfortunately you can't just change seizure meds overnight.  We had to wean him off the Keppra first while we slowly brought the Trileptal on board.  But as the levels of Keppra decreased in Owen's system, his good mood noticeably increased.  Owen has been Keppra free for several days now and it has been wonderful.  My happy boy is back.  Today was the first day on the full dose of Trileptal and so far the only side-effect that we have noticed is that he is tired right after he takes it.  His system should adjust to the Trileptal in the next few days and the tiredness should go away.  Owen's tummy has also settled down on the Trileptal - I think the Keppra must have been causing some of the extreme constipation that we were seeing as well.

And finally I will leave you with some videos showing Owen's progress.  Owen now spends almost no time in his walker - it has been parked downstairs for weeks. He wants to move himself and even though the walker can get him much farther much faster, he will fuss in it and want down to crawl on his own.  We have one very determined little man.  He can now crawl up his therapy stairs all on his own.  If he has a wedge or a stair to use to get him started he can sit up on his own.  I think he is extremely close to being able to push up from the floor all by himself. 

So here is Owen taking a few steps with Miss Tessa just holding his hands.  I posted a similar video a few months ago, but it was very short because he only took about two steps and then fell over.  He can now do this all the way across the room and into the next room and so on...


And here is another video that might not seem all that amazing at first glance, but it almost brought tears to my eyes when Owen started doing it.  For Christmas Santa brought Owen a little wooden noise maker with a frog on it.  It's just two round pieces of wood with a string that holds the two pieces together.  The two pieces close together like a clam shell and make a noise.  I have written before about Owen's lack of tool usage.  He has had a similar toy for years and I've never been able to get him to do more than chew on it or stare at it.  At Christmas though, he figured it out almost immediately:


So, Owen's Christmas present was a muscial toy, and Mommy's Christmas present was seeing him actually use it!
And the Answer Is: B6
We had our appointment with the neurologist today to discuss the rather unpleasant side-effects that we are experiencing with the Keppra.  He suggested starting Owen on a supplement of Vitamin B6 - at about 25 times the dosage in a normal multivitamin.  He says that this helps many children who experience the "Keppra Rage".   He almost seemed apologetic about not changing his meds, but he believes that Keppra is the right drug for Owen and that the B6 has an excellent chance of working.  I am personally a big believer in homeopathic solutions - or at least I believe that there should be a balance between understanding that many homeopathic methods have merit, and also knowing when a drug is necessary.  I told him this and he seemed happier. 

Dr. Wilson said that we should see results within the week.  If we do not then we should double the dose from 25 mg to 50 mg.  If we don't see a change by then, he will change us to a different medication.  Let's just hope and pray that this is the answer as the Keppra has shown a number of benefits for Owen, including much less severe seizures and it appears to help him cognitively too.

So I am off to find some B6 in a form that Owen can take - as in not in big pill format.  If the normal stores don't have it, Anne Kay's Natural Foods will have it in drop form, just at 5 times the cost of it at Walmart. 
Aw Poo!
Nope, it's not the poo.  Just a quick's not the tummy tract that has been making Owen miserable for the last month and a half.  The GI doc looked at his x-rays today and said that the insides are clean. We've now checked the shunt, cochlear implant and intestines - that only leaves one thing: his seizure meds. 

Recently I found more information about the possible side effects of Keppra.  When you look at the initial list from the drug websites they say "possible mood changes".  When you check the newsgroups however you start to read about something affectionately called "Keppra Rage".  For the last month and a half - since before Owen's surgery, Owen's mood has not been great.  We get a few good hours here and there, but for the most part he has been really cranky.  It progressed from just a bad mood to actually biting his hands, other people's hands, scratching himself and generally showing Hulk-like anger.  We assumed that this was from tummy pain, because that is what has always caused his bad moods in the past. He can't tell us what is wrong, so we have to guess.  And that is also why we've tested every bit of hardware on his body and x-rayed his tummy. 

I started asking other parents and other docs about Keppra and they all agree that in some people it really causes uncontrollable fits of anger.  We have an appointment with the neurologist on Friday to discuss other possibilities for seizure control medications.  I want my happy boy back!
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'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. 



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:


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:


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