Wednesday, July 15, 2009

Will you pray for Finley?

After Finley's stroke, I was introduced to the blog world. At first it was a way to update family and friends, but then it became so much more. Soon, it became a place for me to get it all out and "say" what I was feeling or thinking at that moment. It is funny to look back really because I can't tell you how many "posts" I started and even finished, only to delete them shortly after. It was therapy enough to put it into words; I didn't need anyone to read them. Now, however, I am asking all of the blogosphere (is that a word?) to chime in and help me out.
This past weekend, Saturday to be exact, Finley had his first seizure since birth. We were at the ballpark for J.T.'s baseball game and Finley was sitting in his stroller. He just zoned out. His eyes glazed over, he began thrusting his tongue and drool was pouring out of his mouth as if someone turned the faucet on. The nurse in me began to time the "episode" and called the pediatrician to see what she thought we should do. However, the mother in me was terrified... especially because my sister-in-law was witnessing it with me and she looked like she may pass out/ freak out. (fyi: she is the calm one) Our pediatrician said to go to the ER, so we headed to Children's Hospital up the road. Once we were there, I will spare you all of the gory details, Finn had another "episode" and the Pediatric Intensivist felt very strongly that it was a seizure. HOURS later, we were sent home with an emergency medication in the event of another seizure.... and here we are.
So here are my questions and a little bit of information:

1. Have you ever used the Diastat Acudial on your child during a seizure? How do you think it worked? Were there any side effects associated with the medication that you felt were truly the medication and not the seizure itself?

2. If your child wears a medical alert bracelet, where did you purchase it? Are you satisfied with it? Are there any that aren't worth the money/ companies that I should stay away from?

This Monday, July 20th, we are having another EEG. He can't have any sugar or caffeine starting Sunday, no nap the day of the EEG, and needs to take a nap after the EEG is started. Okay, sure! Finley has had two EEG's in his life, but he was 2 days (inpatient) and 2 weeks (outpatient) old at the time. I have no idea how to do this. His EEG is at 2 p.m., soooo my plan is: Take J.T. to preschool in the morning and then take Finley to a 2nd breakfast very close to the hospital. I am going to park my car at the hospital and we will walk to our gym across the street where I will let Finley play until lunch. We'll have lunch at the cafe in the gym and then get on our swimsuits and swim for a while since he loves the water and it wears him out. Then, we will grab a little snack, and walk back across the street to the hospital where he will, hopefully, be ready to zonk out. I am scared to put him in the car because it is "insta-nap" for him. (I tend to have great ideas, but when it comes time to implement them, there are usually some holes the first time around... and I really don't want this to be one of those times!) So....

1. What would you do to keep your child awake? Keep your child happy?

2. How do you get a child to sleep with a zillion electrodes on his head and in a strange place?

3. Any experiences with this that may help me out?

A few days after the EEG, we will see our neurologist:

1. Has/ does your child take a daily anti-convulsant? Which one? Are you satisfied with the results?

2. What questions do I need to ask?

Oh yeah, just one more I think: How long does it take your child/ family member to recover after having a seizure? (It took Finley the better part of 2 hours to get back to normal.... and he slept the majority of the day in between.)

Okay, okay I'm not really done :)

Do you have any advice? I am so overwhelmed right now. I feel like our way of doing things has changed so much in an instant. I feel like I did immediately after the stroke. I am scared to turn my back on the boys in the bathtub for a second (more than usual), I worry every time we leave the house if I have his emergency med, if we will be able to get to the hospital in time if he has a prolonged seizure. Every time the phone rings when he's at preschool, I wonder if they are calling to tell me something has happened. I know that things could be a lot worse, but I guess whenever our normal changes, I have this period of adjusting that is very anxiety-ridden.

I truly appreciate your input.



Lauren said...


A very great friend of mine, had a stroke just days old and is now 22 years old and thriving, I have grown up with and around her more than half of my life. I know a lot of about what doctors have done to her and for her, and what works and doesn't work. She also knows. If you email me, I will be glad to give you everything I know and give you her email address so you can to talk to her. She has been there and lived this. She still has seizures to this day, but there are ways to shorten them.

I am praying hard for you and your family! I know it's a long and tough road ahead, but do not give up hope!


We 2 B's said...

I can't offer much in assistance for I don't know what you are going through, but my heart goes out to you. I can pray! And pray I will. Your plan sounds good and I think that when it comes down to putting your plan into effect you will do great! We have that momsense! I'm so sorry that your family is having to go through this, I'm sure it's a scary and stressful time. My thoughts and prayers are there for you and if there is anything I can do for you let me know.

MamaHen Em said...

Oh Meredith! I can't even imagine how this must be for all of you. I will say God knew what he was doing when he gave Finn a momma and a nurse, all wrapped up into one. There is no one better equipped to take care of your little boy than you - and you do a great job. I think your plan to keep Finn awake and tire him out is perfect - I'll be praying that God will give him perfect sleep during the procedure and that he will just peacefully conk out. There will also be prayers for you, too :)

I know nothing about seizures. Our neighbor across the street has a 17 year old son who has had them most of his life and a year ago I was with her at Target when he had one. She called the paramedics asap (she is also a paramedic). I know he gets treated at Childrens and as he ages and has hormonal changes, they adjust his meds. He also has a German Shepard dog who is trained to sense when he is about to have a seziure, which I know gives his mom great peace of mind as the dog goes EVERYWHERE with him. I'm sure she would be a FOUNTAIN of information - if you want I can give you her number.

And, to close this novel :) if you need anything, let us know.

Melissa said...

"she's the calm one".....ha! that is the funniest thing i think i've ever heard! i've never passed out, but i have been known to freak out....i would love to turn back time and not remember how he looked during that seizure (as i'm sure you would). i felt much better when he smiled at me a few minutes later. you know that i have no idea what is going on when it comes to seizures...i've only been trained in pediatric urology and broken femurs. i can ask a friend of mine about the medical alert bracelet for ya. love you mer!

Mac's Spot said...

I am thinking about you. I wouls I could make it better for you and baby Finn. I am praying for you guys! Love you all!

Darlene said...

Meredith, my dear sweet daughter!!!! All I can offer you is the fact that God IS in control and He IS on the throne. He has a wonderful plan for Finley's life and I believe that with all my heart. Hold onto His strength during this time! I love you more than my life.

Megan said...

Hi Meredith,

I came to your blog from Kelly's prayer blog.

I too am a mom to a child with seizures and am also a nurse. I can relate to doing some "nurse-y" things during the episode all the while completely freaking out.

My 6-month old daughter Ella has a catastrophic type of epilepsy called infantile spasms. She was diagnosed only a month ago.

I can't answer the EEG questions since Ella's just a baby, keeping her awake then having her sleep for the EEG was relatively easy. Maybe you could call the center where they will be performing the EEG and ask for tips?

About meds, my girl is on phenobarbital and keppra (as well as high-dose steroid therapy because infantile spasms responds rather well to steroids). I think the phenobarbital makes Ella very sleepy and since it is not very effective with IS seizures, she is weaning off of it now. I can't really speak knowledgeably about what side effects keppra may have because she's never taken it by itself, but our neurologist speaks very highly of its ability to cover a wide range of seizure activity. And it tastes good, so that's a bonus :). Ella has been seizure-free for more than three weeks on her current drug therapy, so I am happy thus far.

Questions to ask the neuro: what type of seizures are these? What treatment do you recommend? How often will you see my son during treatment? What are your goals for treatment--seizure freedom? And if so, how do you define treatment success? Things like that.

I try to ask just enough questions to cover the period in between appointments, if that makes sense. For example, we're seeing our neuro every two weeks right now, so I ask questions to get us through the two-week-periods and try not to get too far ahead of ourselves.

Remember, every child who has seizures is different, so there is little value in trying to predict Finley's outcomes based on "the statistics", though it will be hard not to fixate on that. Try to take it one day (or one hour if you need to) at a time. And find other parents who are further down this road that can be a source of support. There are some great websites out there dedicated to this very thing. You're welcome to email me if you'd like to. mdaniel78[at]gmail[dot]com


Kelly said...

Hello. I am visiting from Kelly's Korner.
My name is also Kelly and I have a son, Collin who is now 4 yrs old.
At 15months old he had his first seizure. Similar to what you described in Finley's episode. We had an EEG & MRI. And for almost 3 yrs we had NO seizures.
Then Easter morning this year while getting ready for church Collin had his 2nd seizure. We took him to the ER, and were prescribed the diastat...I have not had to use it for him. (sorry that i can not offer info on it)
We were scheduled for more tests and had an EEG on April not worry about the sleeping...they are GREAT with getting the kids to sleep...and will allow you to get in the bed with him to comfort him. Your plans sound good to get him up and try and wear him out. :)
On April 28 my son woke up vomiting and went into his now 3rd seizure. Diastat could not be given (so I was told) do to his vomiting. He was then put on Keppra and has remained on it. I have not noticed any side effects. We were told it could cause drowsiness or slight attitude change. I have notice neither. And Collin has not had another seizure since being on the Keppra.
As for questions, definitely ask about the type of seizures they are, probably partial or compound partial. Also ask if your Children's Hospital has a seizure clinic that offers an informative seizure class. Ours does and the NP runs it and give you ALL types of info. GREAT class and you would most likely meet other parents in your area going through similar situations. Do not be afraid to ask for a 2nd opinion or to change docs if you feel the need. Most docs @ Childrens Hospitals are AWESOME, but sometimes they are not the right fit for everyone.
Ask for an MRI if they do not offer one. Sometimes this can show something the EEG does not pick up on. Both Collin's EEG's came back normal, yet he had some scarring on his brain and an enlarged ventricle that was applying pressure to his brain. Since a seizure did not take place during the EEG, none of this was detected.
Collin has since had surgery (6/23) to "fix" the enlarged ventricle on his brain. We go back in Oct to see how he is doing & have another MRI.

Lastly, PRAY!
I will definitely keep your family in our prayers and come back to check on all of you.
If you have any more questions, please feel free to email me...

Tami and Bobby Sisemore Family said...

I dont have any answers or words of wisdom for you but just wanted you to know I care and am praying and am so happy to follow your blog now.


Teresa @ Grammy Girlfriend said...

My heart hurts for you..will be praying...

Andrea said...

I am a member of the cp moms yahoo group. My daughter, Sophia, who is now nearly 2-1/2, had her first seizure at 21 months. For her, the Diastat definately works. I've given it to her twice to stop seizures -- the second time, she was seizing when I got her out of bed in the morning, so it had probably been going on for a long time, and the seizure stopped a couple of minutes after I gave her Diastat. I was terrified of doing it beforehand, but it is really not bad. She is pretty much knocked out the day of a seizure, and I'm not sure how much of that is post-seizure recovery and how much is the Diastat (valium). Also, I can completely relate to your feeling anxiety-ridden over this. It is very difficult to adjust to this "new reality," and I feel for you. For me, I eventually made the choice to live life rather than feel that the threat of seizures were controlling me (ie, I sleep at night rather than wake and check on her every hour or more like I did at first). Of course I watch her closely whenever I can and am always on the lookout for seizures, but I realize that bad things can happen at any time, and it is better to live enjoying the good than to live in fear of the bad. That has helped me to feel better. Best wishes to you and your son.

Andrea said...

I forgot to say that Sophia takes Keppra twice a day. She started it after her second seizure, and the dosage was increased after her third. If she has another seizure, her neuro said he will add another medication. I actually haven't noticed any lasting side effects from the Keppra, thankfully.

rae said...

I work at a facility for children with special needs, and we have many children enrolled who have seizures. The nurse on staff told me that the diastat can cause labored breathing and that as soon as it is given the child needs to be taken to the hospital to have their breathing monitored. This may be a good question for the doctor. I am praying for your son and your family. I pray that they find a treatment that works to control the seizures.