See Christian and Lola's ISR video!

Wednesday, November 18, 2009




I can hear the collective sigh. It's not a good sigh. It's the 'Man, that sucks" sigh. In this collective sigh would be mine that stands alone and it's one of deflation.

I have noticed these flickers in Christian's eyes that make him look like he rolls his eyes to the right. More recently the episodes have gotten stronger. So much so that when Christian is in therapy, it will jerk him out of proper alignment. It's about a 5 second jerk and he's back with us. It started to concern me even more when he started to whine after each episodes and the episodes would happen in clusters and seem to hinder new things he was trying like turning his head and trying to focus to the left.

So I requested another EEG to see what was going on. I don't want my son on more meds but I certainly don't want to hinder his progress either. We did an EEG yesterday.

It is said that EEG's give more information and a more accurate picture while the patient is asleep. Luckily, Christian fell asleep and we were able to get episodes happening while he was awake, as well. As the EEG was running, I was able to consult with the neuro as she was watching the EEG come across her computer. She confirmed the EEG while Christian was asleep was...messy.

There was a lot of seizure activity while he was sleeping. She showed me the normal brain wave activity he had and the abnormal/seizure activity he had. It was all over the place while sleeping. Of course, while awake the EEG looks calm in comparison. Hardly anything to write home about. This is confusing to me because while sleeping there are no stimulants. He's completely calm, no jerking, no flickering eye lids, he's just peaceful. Now that I know this I feel like putting him to bed is sending him to craziness. Furthermore, it's not necessarily that the EEG is or is not worse because the last EEG was given while awake, too. So we didn't get any of the high activity on that one either.

The good news is that Christian is still making great progress so these seizures aren't really holding him up (that we know of). I mean it could always be that with the absence of these seizures, Christian could progress even faster. But with the information we have now, he seems to continue progressing at a steady pace even with the seizures happening. But who really knows what's happening in there. Even the EEG is only an estimation of what's going on. I just don't want him to be in pain.

The neuro was concerned so she suggested to increase meds quite a bit to what she still considers a low dosage of Keppra. We've done that so far and I haven't noticed any difference or decrease in episodes. But what I have noticed are some lovely side effects - sleepiness and irritability. She said it could take a couple days for the increase in meds to work or could take a couple weeks.

Obviously this is not where I wanted to go. But it's not under my control and that's what pisses me off. I feel like I've failed, like going and going and now this. And now I'm faced with the choice of having a zombie child with no seizures or a child who is present and alert but having seizure activity.

I need alternatives. I cannot and will not except that it has to be one extreme or another. I have heard of natural vitamin supplements that help in eliminating seizures but this would require experimentation. Reducing or eliminating one med and replacing it with a supplement is the only way to see if this will work. This is my son's life, though. It's not something I can play around with until I get the right cocktail.

Deflated is right. I'm not really sure where to go for answers because seizures and brain activity are not an exact science. They can't say anything is definite. They can't say this isn't part of his recovery. It's all a big guessing game, including what meds and how much to give him.

I'm trying to tell myself that we've had relatively no big setbacks and only progress so we were bound to have a hiccup sooner or later. And I prepared myself ahead of time so I wouldn't be so shocked. But I was still disappointed because now we have another issue we have to put energy toward instead of something fun like physical therapy or therapy toys.

So now I'm on the hunt for alternatives. If anyone has a friend who had a sister who's cousin's neighbor tried something that worked, please share. I'm open to anything.


ferfischer said...

Oh, Shauna - I know EXACTLY where you are at. We are right there with you. I wrote you a message about this earlier, but I can identify - down to the Keppra! As you know, we just added Zonegran (as opposed to Topamax) because Cici has a problem sleeping, so the side effect will help her, I think. It takes three weeks to get up to her regular dose, and we're in the middle of that, and her episode today looked more intense. Great. I'll have to give it about a month. That said, we're keeping her on Keppra too until we see how that works. As for other things I'm going to look into - the ketogenic diet is something I've heard of that works well. I will talk to the woman who does it with her child here, and I will let you know what she says. We may start that soon. I know it involves making your own formula! I hear it works great though! I'll stop taking up your blog though! ;)

Robin said...

Keep your faith strong. Answers will be revealed.

With God All things are possible.
Love, Mom

Makenzies Miracle said...

Keep your head up!!!!
On the keppra, I have known more kiddos that have had more siezures on keppra then off of it. Is there another drug they could use? Also I would look into Umbilical Cord Stem Cells. I have know that therapy to reduce if no eliminate seizures in some children! Christian IS doing GREAT!!! He looks wonderful and you are doing a GREAT job!!!! You have certianly NOT failed!!!!

Alicia said...

I am so sorry Shauna. I hate this for you and Christian.

I'm sorry I have no suggestions about seizures or meds or supplements. One area of special needs I don't know anything about.

I offer the only thing I can, and that is my constant prayers. I am praying you find the right solution for Christian.

pajrnjam said...

I'm sorry about the seizures. My son had them from age 1-5. He did not have a brain injury so I don't know if the side effects would be worse with a brain injury or not. My son did fine on meds, slowly tapering up/down was the key. As a nurse I can tell you that the best thing is for the seizures to be controlled so that his brain can continuing healing-uncontrolled/breakthru seizures would not be helpful to him. Good luck with your decisions, you have not failed him by any means!

Rochelle said...

Hey, I popped in tonight to see how y'all are doing. Sorry to hear about the seizures and don't really have any suggestions. You'll figure it out. You haven't failed. Its just another step in the recovery process. Stay strong and focused. Prayers coming your way!

Jendioguardi said...

God does not give you anything you cannot handle. You can do this!! We are all with you in prayer. Haylie started having siezures when she was just 2 yrs old. She was on Tegretol for several years until she grew out of them. I understand your frustration with these hindering Christian's progress. For Haylie, her siezures were fairly minor and did not hold her back one bit. Although we had to work her way up to the right doses and back down when she was done, despite the trial and error, it all worked out. Keep up the faith! HUGS! XOXOXO

Princess Abigail said...

Abigail started having infantile spasms (West Syndrome)when she was about the same age as Christian in this (now old) post. I hope you have managed to find a solution - but wanted to share with you that "Sabril" (don't know what its equivalent in the US would be) totally erradicated all her spasms. In three years, she has only ever had one seizure, and that is because we forgot the medication one day. Although it is thought there may be a risk of damaged peripheral vision in the long run, the fact that the seizures stopped made a strong impact on Abigail's learning and cognitive abilities. Hope this helps!

Alison in France
(The Bernard Bunch)

Post a Comment

Popular Posts