Having a daughter with epilepsy

[darkhorse6]

Well, here it goes. My stepdaughter has epilepsy and it seems to be based on stress levels mixed with overall attitude. We recently moved from Montana to Colorado because of work, and I will likely have to move again after returning from FLETC (for more training). We'll be moving to the "other side" of the reservation I work on, which is in Utah. We have made a few ER trips due to the severity of the seizures and have appointments set in Salt Lake City with a specialist.

The thing that gets me is that we also have a young son (toddler) that my wife has to take care of also and it makes things stressful when our daughter has another seizure. My wife tends to freak out easily and that can make things worse, causing me to get frustrated with my wife definitely making things worse. Luckily, the Chief of Police and my Lieutenant are cool with everything so far mainly because I have kept them aware of any issues, but my mind starts to wander a bit sometimes. Will my stepdaughter be ok? Will I ever be penalized work wise due to this situation? The scary part I think is the unknown aspect of epilepsy. We always have emergency medicine for her and have gotten a service dog too, but I'm wondering if there is anything else that I can do? I love my stepdaughter and want to do whatever it takes to take care of her. I guess at this point, I can say that this is the part of parenting that I don't enjoy. It hurts to see my kids in pain or affected by an illness. Has anyone else had to deal with this type of situatuion before?

[CCCSD]

Dark horse,

As a medic, all I can tell you is that family members will learn to not freak out and start handling it calmly. Your little guy should be taught about his special sister and learn how to take care of her. Just be patient and don't get stressed out!
I'm sure it's been done, but train your family on what to do, tasks to be done, and to just BE THERE for her afterwards.
Dog is awesome!

...and stop stressing the kid out, Dad!!

[just joe]

Get your FMLA paperwork in.

Have an emergency "hospital bag" packed and in the closet for those unexpected trips to the ER.

[darkhorse6]

We've got a bag ready to go with the essentials, but that lesson was learned after the first time we needed one and didn't have it. The dog really is awesome, and she really listens well (walking without a leash good). In regards to the training, it has helped with everything for sure (especially where the go bag is and how fast we can get into my truck). It just boils down to the fact that I am much calmer under pressure than the rest of the family, but I shouldn't look down on them for it. They don't have the same life experiences I do (and I hope they never will) so there isn't that same "baseline" to fall back on.

[EmmaPeel]

We've got a bag ready to go with the essentials, but that lesson was learned after the first time we needed one and didn't have it. The dog really is awesome, and she really listens well (walking without a leash good). In regards to the training, it has helped with everything for sure (especially where the go bag is and how fast we can get into my truck). It just boils down to the fact that I am much calmer under pressure than the rest of the family, but I shouldn't look down on them for it. They don't have the same life experiences I do (and I hope they never will) so there isn't that same "baseline" to fall back on.

Hang in there, darkhorse, you're doing great.

[Langford PR]

.............. It just boils down to the fact that I am much calmer under pressure than the rest of the family, but I shouldn't look down on them for it. They don't have the same life experiences I do (and I hope they never will) so there isn't that same "baseline" to fall back on.

From the sounds of things, I believe you hit the nail on the head. Oh, and by the way, you'll probably find this thought process overlaps with people at work and in your future career. Think of the all the people who disappoint you with their performance under stress.....Now, think of how disappointed your parent/instructor/teacher/partner/co-operator etc was with your arz BEFORE you got your Shiite together.

The wife, over time, will get onboard the path...give her time, patience, and understanding. Change yourself and Shiite-can the frustration!!!! Build a mountain of empathy. God bless and best wishes for the little one and you all.

[Country_Jim]

I'm sorry I don't have advice, just prayers for you and yours.

Stay safe.

[Monty Ealerman]

The age of the patient, the frequency and severity of the seizures, and brain scan results all should contribute to decisions regarding the course of treatment.

Depending on the specifics of that and further information, and on the effectiveness or lack thereof of her current treatment, an option you might want to consider for your daughter is implantation of a vagus nerve stimulation (VNS) device -- http://www.epilepsy.com/learn/treati...timulation-vns.

I think the companion dog is a good idea -- perhaps she could be trained to carry an emergency bag and to allow strangers to help your daughter -- she could simulate a seizure and the dog could be trained to not panic and go into defense mode.

[codemanski]

darkhorse6...
Although we now have my little guy's seizures under control, (with daily medication), I can recall quite vividly the first time he had a grand-mal... both the wife and I felt totally helpless as we waited for the paramedics to arrive. This was just one of a myriad of problems with our 26-weeker, (he was a blessed "gift" from a drugged-out step daughter), and I can't recall how many times the wife had to scramble to get him to the hospital. What we have learned is that eventually you become an "expert" at care-giving, and you end up doing what it is you have to do regardless of what you feel at the time. It DOES get better, and the seizures become just another part of everyday life. Hang in there. Your step-daughter has "different abilities", and not a disability, and I pray you and your family will find some comfort in knowing this.
Ski

[darkhorse6]

Having done as much reasearch as I possibly can, it's mainly certain medications that we'd like to avoid so she doesn't have future liver problems and such. Having a service dog is great, and we also got this bed monitor that you put under the mattress that beeps when it senses a siezure. That one is great, because it wakes me up so we can time the length and see the severity of the siezure for data purposes. Keeping a bit of a log going has helped the doctors tell us what is goping on in certain respects. After all, you learn something new every day. Thanks for the kind words and helpful tips guys!

Ski... you are right on so many levels. It has gotten easier, and it has helped us understand that the care-giving part is truly important. It helps that my chain of command has been very supportive so far too. That is a blessing in a pretty big way.

[IAM Rand]

I hate to say this due to the nature of my/our jobs, but Charlotte's Web. Made right here in CO. I think it can be found in Colorado Springs. I have heard only positive things about it. You may have to have your wife pick it up instead of you.

Good luck.

[darkhorse6]

I hate to say this due to the nature of my/our jobs, but Charlotte's Web. Made right here in CO. I think it can be found in Colorado Springs. I have heard only positive things about it. You may have to have your wife pick it up instead of you.

Good luck.

My wife would definitely have to do it for sure... And it looks like a great solution.

[IAM Rand]

I have heard of people moving their family here just to get it. I am not a very big MJ fan and have seen way to many "YOUNG" males with back issues and their MJ cards, but I do see that there are possible benefits to TCH. Worth a shot. Wouldn't/shouldn't be too difficult to find a doc that will prescribe it. There may even be a website here that will give you a support network to help you with the process.

[darkhorse6]

I have heard of people moving their family here just to get it. I am not a very big MJ fan and have seen way to many "YOUNG" males with back issues and their MJ cards, but I do see that there are possible benefits to TCH. Worth a shot. Wouldn't/shouldn't be too difficult to find a doc that will prescribe it. There may even be a website here that will give you a support network to help you with the process.

Yeah, we are definitely exploring all available options for sure. We've got to go to Salt Lake City for some appointments at the end of the month, so we'll get a good idea of where she is at.

[IAM Rand]

Have you checked out Children's Hospital in Denver. They have a bunch of top notch people. Many moons ago we have spent many hours up there.