Prayer Request

Please pray for G today as she is having another MRI done, which involves sedation. She's not especially nervous about the "brain pictures", but she is worried there may be blood draws or shots involved. She does NOT like needles at ALL, so it will be an unhappy experience for everyone if either of those need to occur. If you'd remember to lift her up to the Lord today, we would greatly appreciate it. Thank you!

Update on G

Many of you have asked how G is doing after she was diagnosed with epilepsy last month. We really appreciate your prayers and concern, so I wanted to update you. She has been on the medication for a month now, has had a second EEG (we call it a "sleep test"), and we have met with the pediatric neurologist.

A Praise: The second EEG was normal, which means the medication she is currently taking is controlling her absence seizures. We're very happy about this!

The pediatric neurologist said her two episodes were not typical absence seizures, since they have lasted so long both times and have a period of confusion afterwards. They could be complex partial seizures. The medicine she is on is most helpful for absence seizures, so the doctor isn't sure how long it will control her longer episodes. Since it is controlling the smaller absence seizures that showed on the first EEG, we are going to keep her on this medicine until she has another breakthrough seizure. She will need another MRI in a couple months and then she will have EEG's every 6 months or so to monitor the effectiveness of the medication. In a couple of years they will consider taking her off the meds if her EEG's are clear, and see what happens. Some children grow out of epilepsy.

Another praise is that it seems her night terrors have decreased, both in severity and frequency, since she started on the full dose of the medication. These are not necessarily related to the epilepsy, as no one knows what causes them. She could just be outgrowing them, but the timing seems like more than a coincidence at this point. If the medicine is helping to control the night terrors, even if just a little, then great!

A Prayer Request: We would ask for prayer that the medicine would continue working and that the side effects would be few and mild, and that the next MRI would be clear. Pray also that the night terrors will continue to be controlled. With all of G's tests and the baby coming next year, we are thinking about changing our insurance, so please pray that they will cover her required tests and not consider this a pre-existing condition.

Thanks again for your support and prayers. They mean a lot to all of us!

Another Seizure

Many of you have been asking how G is doing. The MRI was clear last week, so we know for sure that she has epilepsy, and that this isn't caused by anything else like a tumor or fluid. We praise the Lord that she is a healthy, normal girl, and that we know what she has and how to treat it. She started on seizure medication early last week. It doesn't taste good (even after adding flavor to it), but she has been very responsible about remembering that she needs to take her medicine twice a day. :-) We hope this medication works for her, but she isn't on the full dose quite yet.

G had another seizure on Saturday night. I was giving her and H a shower, when suddenly she just went blank. She wouldn't answer any questions or respond when I asked her to do something. This time I knew what was happening, so I calmly told H that she was having a seizure. H asked what we should do, and I told her that we just make sure she is safe. I finished washing them both up and Ted came to help them get dressed while I washed up the other two girls. G could walk when led, and kind of giggled a little bit when I tickled her, but otherwise was unresponsive for at least 5 minutes. By the time they were all in jammies and I was brushing their teeth, G grabbed both sides of her head and started crying. She nodded when I asked if she had a headache, and was able to shake her head yes or no about where it hurt. She still wasn't talking, but she was more responsive. We finally got her talking about half an hour later. This is very similar to what happened last time.

I was glad that we knew what was happening this time so we could stay calm, and I was also glad that H witnessed this seizure. Now she knows what to expect and what to do and she doesn't have to be scared. We would like further prayer that the medicine will work for her to control her seizures. The other thing is that these are not typical absence seizures. They look like absence seizures (because of the blank stare and the lack of convulsions or shaking), but absence seizures usually only last 10 seconds and don't have a period of confusion, whereas G's episodes have both lasted more than 5 minutes with a slow recovery time afterward. Because of this, we will be asking for a referral to a pediatric neurologist, and I don't know how long it will take to get in. We appreciate your prayers and support, and if you'd like an illustration of how to explain epilepsy, go here.

Explaining Epilepsy to Young Kids

When G was diagnosed with epilepsy, I asked the pediatrician and my mom (a nurse) how they would best describe it, and this is what I came up with, combining their responses.

I explained that everyone has electricity in their brain happening all the time (like lights turning on and off in certain rooms), but she has some extra electricity that can sometimes distract her from what she is doing (like all the lights flashing at the same time really fast) and cause a seizure. The electricity doesn't hurt (just like it doesn't hurt you in your brain), but she could get hurt when her brain gets distracted, like by falling off monkey bars or her bike, which is why she needs to take medicine to try to control the extra electricity. She can still do all the normal things that kids do and she isn't sick. She just needs to take medicine to keep her safe.

I also found some information explaining epilepsy to kids here. There are some questions on the left hand side that answer a lot of questions simply. One thing I got from that site was explaining that the medicine kind of puts your seizures to sleep, which is why you have to take it every day.

It's not scientific, exactly, but it seemed to do the job! If any of you have ideas or experience with explaining epilepsy to young kids and their siblings or friends, please leave a comment!

And just in case you were wondering, what G experienced last week was most likely an atypical absence seizure, because it lasted so long and she had a slow recovery time and a period of confusion.

Update on G

Thank you for your prayers and concern about G. The EEG showed absence seizures with the risk of generalized seizures, so she will be put on medication for epilepsy. She is having an MRI done on Thursday to make sure we didn't miss anything else. Please pray that she does well with that, as she will be put under sedation, and pray also that the MRI is clear. She'll then have a repeat EEG in a month to see if the medication is helping. If so, she will probably be on it for at least 2 years before they consider taking her off of it. We appreciate your prayers for our family, and are thankful that we serve a God who is in complete control. Though this is a new and somewhat scary topic to be dealing with, the Lord has given us peace. G is doing very well with everything, and her faith is also strong. Please pray for her as she enters this new phase in her life.

Prayer Request for G

Our 4-year-old daughter, G, was catatonic for a while earlier this week. Her eyes were open and she could walk when guided, but she was fully non-responsive for about 5-10 minutes, then had a slow recovery over the next hour. After she was able to talk again, about 30 minutes later, she could remember a Bible verse (1 John 4:10, God loved us and sent his Son), but couldn’t remember her sisters’ names. It was pretty scary.

Ted took her to the ER for a CT scan and bloodwork, which both came back normal. The ER doctor chalked it up as an “unresponsive episode”. A couple of hours later she was completely normal from what we could tell.

She had an EEG done the next day. We haven't heard official results from the doctor yet, but she seemed to have several small seizures during the study (imperceptible from what could be seen, but showed up very clearly on the EEG).

While we are waiting to hear more, we have several good elements in our favor: 1) Ted's sister is a doctor with a neurology specialty (with adults, not pediatric) so she should be able to help us with questions and treatment, 2) the EEG tech was a friend of the family, which was calming for G (and us!), and 3) we have a great God who is in control (even if we don’t understand). He has given us peace about the situation, even though we don't have any definite answers yet.

Thank you all for your concern and your prayers. They are heartfelt and appreciated.