Very quick update

Saturday night Lily had a seizure that last 3 and 1/2 hours. We are in the hospital right now. There are a bunch more details I want to share with everyone but right now I am sleepy. I will share the story later. Thanks for reading and pls keep the prayers coming!

The radio and another "worry night"

First off I want to thank Ray Horner and 1590 am for allowing us to talk on the radio this morning about Lily and the blog. Ray was awesome, made us very relaxed and comfortable! It was really nice to discuss what was going on with Lil on the air and it was a great experience for all of us.

Now I had totally planned on making this blog about Lily and only about Lily, but my thoughts and feelings are going to take center stage right now. I am normally a very upbeat person but am not feeling very upbeat right now.

We were clothing shopping for school for the kids today. I was doing good, having a good time looking at all the pretty girlie clothes for Lily. I came across this really cute jumper set in her size that I thought would look adorable one her. Then realized that I couldn't get it for her for school. The outfit would be to complicated if she were to have a seizure at school and they needed to give her the DiaStat. And then it just hit me. You know, before her tonsils and adenoids came out I was so certain that  was what was causing her seizures (lack of oxygen at night) but they are gone and have been gone since April. Then she had the seizure last week. I guess it just hit me tonight that this is just not going to go away. Not now anyway. And it's just depressing me. I know it's stupid really. There a lot worse things that could be wrong with her. I know that but right now it's not making it any easier.

Every night I am on "seizure watch" and am not getting much sleep. The sleep I do get is pretty light and unrest-full.

Today I miss how things used to be.....wish they could be that way again but I know they never will. Even if her seizures become controlled I will always be on "seizure watch".

Sorry so down, should be better tomorrow.

Thanks for reading

Update on Lily

Well, I think the DiaStat is out of her system now. She is back to her happy, occasionally whiny (as all 3 yr olds can be lol) self! I am very glad. I know she needs the DiaStat to stop the seizures but I can't help worry about these meds. I know they have been tested, etc but she's just so little, hardly more than a baby, really.

Guess I am just having a "worry night" as I like to call them. Oh well.

Once again thank you all for the visits, comments, support and spreading the word! You have no idea how much we appreciate it!

If you want to hear us on the radio show on Thursday you can catch it on the web at http://www.akronnewsnow.com/news/wakrnewsnow.asp

We will be on Thursday from 9:10am-9:45am eastern time zone

We are going to be on the radio!

Thursday morning 9:10am-9:45am on wakr 1590 am. Please tune in and tell your friends!

So comes the appointments and a thank you

So on the schedule for today is to make appointments for Lily. I have a whole plethora of appointments I have to make for her. School starts for me, Lily and CJ in one week, so that's going to be interesting. I already know I have one professor that is going to be understanding. I had her in the spring when Lily had lots of things going on and I missed a great deal of class. She was really great about it. I hope the others are as well. Hopefully I won't have to miss nearly as much as I did in the spring or if I do the professors will be cool about it. I really don't want to add a visit to the Dean of Grievances to my list of things to do.

I think the DiaStat is out of her system or almost out. I should probably research to see how long it takes. But she seems much happier today so I am thinking it is almost gone. We will see how the day goes. CJ has a soccer game tonight. We will see how she acts at the game. Hopefully all will be well.

I want to thank everyone for sharing Lily's blog. We have had over 250 hits! Please keep sharing with everyone you know! Your support is very much appreciated!

Now here is some info that I forgot to mention

Two things recently that happened I forgot to mention and they have me puzzled.

On August 3rd Lily was sitting on her brother CJ's lap when she decided to throw herself backwards as only a 3 yr old can (lol!) and she and CJ cracked heads. I thought poor CJ's cheek bone was broke. He was ok but they hit so hard Lily ended up with a concussion. You would think that would trigger a seizure...

Also last weekend we were at Hershey Amusement Park. Lily was around some flashing lights. After talking to the DR when she was in the hospital she told me (she being the DR) that flashing lights can cause seizures. She was going to pull up Lily's EEG to see how she reacted to the strobe during it. But I told her not to bother cuz I already knew how she reacted.

I just don't understand why these two event didn't trigger a seizure.....but then a few days later (after Hershey) she has one. I asked if it was possible for it to be delayed from the lights and she said no. The lights trigger them right away.  So confused!

Long day.......but any day without seizures is a good one

So today wasn't bad, but Lily is a bit crabby and sleep from the DiaStat. I like this much better than how she is after she has the Atavan. After the Atavan she can be weepy for days. I'll take sleepy and crabby over weepy any day! lol

We are all returning to normal much faster this time than we have in the past.....I'm really pushing for it too. I think its best for the kids (and us) if we get back to normal ASAP. And I think I am doing a pretty good job at it........

Then the sun sets and the butterflies start in my stomach.  And I can't sleep or when I am able to sleep I jerk awake with every little noise.  Hopefully I will be able to chill soon.

Lily is snapping back pretty quick this time though. Despite the sleepiness and the crabbiness, those aren't constant. It just comes out here and there throughout today. Those who know Lily can attest that both of those are not her norm. She is almost always happy! But I don't think it should take too terribly long for the DiaStat to come out of her system. Hopefully this increased dose of Keppra will do the trick and keep the seizures at bay this time. Only time will tell.

So the story (this is gonna be long, grab a drink!)

Now this is going to be summarized because if I were to  go through the whole story it would take up a huge amount of space on this blog. If you have any questions please feel free to ask away. And if you know the story and feel that I left something important out, please speak up! I gotta a whole lot of info going on and may not remember everything that needs to be out there.

Lily is a happy, outgoing, bright 3 yr old. Her first seizure was a month before she turned 3.

On Dec 14, 2009 Lily had her first seizure. It was a Status Epilipticus (this is a seizure that does not stop on its own). Her seizure lasted 45 minutes that night. She was given Atavan to stop her seizure by IV. She was admitted to the hospital that night. They did a CT scan which came back normal. She also had an waking EEG that was normal.  Less than 24 hours later she was discharged and we were given a prescription for DiaStat (A med that is given rectally that is suppose to stop a seizure.).

On Jan 24, 2010 she had a second seizure. This one was very mild compared to her first one (which I will describe later in this blog post) and only last 10 minutes. She came out of this seizure on her own. She did go to the hospital that night but was not admitted.

Jump ahead to April 10, 2010. Lily suffered her 3rd and most long lasting seizure. She seized for an hour and a half. The paramedics could not get any of her veins to respond, therefore they couldn't get an IV in her, therefore they could not give her any Atavan. She was given the DiaStat by me that night and it did NOT stop her seizure. Lily was admitted to the hospital that night and we stayed there the weekend.

Now jump ahead again to August 19th (yup last night). Lily had her 4th seizure. I was not home during this seizure. It lasted about 6-7 minutes. Tracy gave Lily the DiaStat and this time it DID stop the seizure! Yay.  However at the ER after she fell back asleep she was making some odd twitching motions in her sleep, so they decided to keep her over night. We are home now and she is doing very well.

Other details (and this is where it gets long!). Lily had a dose of the H1N1 flu mist vaccine on Nov 23, 2009. She developed a stuffed up nose the next day, which lasted 5 (yes you read that right) 5 months. She had her stuffed up nose, repeated ear and sinus infections from Dec to April 12. April 12 (yes 2 days after the BIG seizure) she had her tonsils and adenoids out and had tubes in her ears. The ENT doing her surgery said her adenoids were so large they were completely obstructing her airway and that her tonsils were a plus 3 (plus 4 are the biggest you can have). Since having the T and A and tubes, she has not had one infection. But since her adenoids were obstructing her so badly that means the flu mist was most likely trapped in her head for 5 months. Am I saying that is what cause her seizures? Nope, but it's something that I think should be taken into consideration. She had a second dose of H1N1 flu mist 10 days before her second seizure.....

So in Jan she had both a EEG and a sleep study done (not at the same time). The EEG was abnormal, showing that Lily's brain was misfiring every 15-20 seconds when she was awake and every 10-15 seconds when she was asleep. This is when she was diagnosed with Epilepsy. She was put on Keppra and a MRI ws ordered. The sleep study showed that she had both obstructed (adenoids) sleep apnea (when a person stops breathing in their sleep) and centralized (caused by the brain) sleep apnea.

So the MRI was also abnormal. It showed that Lily had bilateral signals arising from her Basal Ganglia.  I can't really explain what that means as I am not quite clear on it myself but I do that it is not normal.

Lily also had an abnormal urine test. She had something show up in her urine that she not have been there. Most commonly this is linked to a very rare genetic disease called Canavan.  This result does not make any sense as she has NO signs of the disease besides the abnormal MRI and the urine test.

I contact a Dr in New Jersey who has done a HUGE amount of work with Canavan patients. I explained what was going on with Lily and this is part of her reply:
"

Dear Ms. Secrest,

I doubt your daughter has Canavan Disease because NAA in urine is very low as compared to typically and atypically affected Canavan patients which we diagnosed in the past. A slight elevation in urine NAA has been reported in patients affected by other leukodystrophies. Bilateral T1 & T2 abnormalities in MRI signal is commonly reported in mild as well as severe developmental disorders."

 

Her Dr's at Akron Children Hosp see no other reason for her to have this type of urine test besides Mild Canavan. So we will be getting her tested for the canavan within the next couple weeks. If you are wondering why it has taken so long for us to get the test it is because the insurance company  denied the test and we have had to jump through some hoops, etc to get approval for this testing. Please keep your eyes on the blog for further updates on the testing and results.

Now her is a run down on her seizures (not the description, that's next and you'll get a warning first). All of the seizures have been an hour to an hour and a half after she falls asleep for the night. 3 out of the 4 was when she was having a great deal of trouble breathing in her sleep. With ALL of them she has had a croupy like cough days before the seizure.

Ok now the description of her seizures...........

They always start with her vomiting. Then she hyperventilates, her eye rolls and she goes limp, but her eyes remain open. The hyperventilating is really scary because you are not sure if she is getting enough oxygen or not, but she has never turned blue. She has had some slight trembling of her limbs but not that often. The 2nd seizure she vomited but didn't hyperventilate and she was not completely out of it like the other two. The 4th one I cannot say because I was not home when she had it. When I got home about 10 mins later she was no longer seizing.

If you have made it to the end of this blog post, thank you!! Please pass this blog on to everyone you know! Prayers, candles lit, good vibes ect are very much appreciated!

Reason for this blog

There are a few different purposes for this blog. First and most important to me is that maybe, just maybe someone somewhere will read this blog and say 'Hey, that happened to someone I know and here is what we did" or at least people who are in the same spot that we are in.

The second reason is to educate people on seizures and epilepsy. It's a scary thing but not as scary as you think.

And third to offer support for people who are going though the "well, we don't know what's wrong with your child and we don't really know what we can do to stop it." I am NOT in any way shape or form bashing the medical community with this statement. I would PREFER that they were honest with us and say we don't know then trying to pull guesses out the booty. But it is a TREMENDOUSLY difficult thing to go through.

I beg you to please pass this blog on to everyone you know! The more people this blog reaches the better chance we have for getting some answers.

Thank you for reading!