Lean In

I said hopefully the next time I wrote a post, we would hopefully be through this, and to be honest, I was beginning to think that there really wasn’t going to be light at the long, dark, lonely tunnel but it’s been three nights of peaceful rest. I’m still on edge, always expecting screams to come, but Colleen seems to have turned a corner. And I can only begin to imagine how bad it was for her body to take a month and a half…nearly two, to recover. This past Tuesday, she fell asleep around 12:30PM, while I was at work. She didn’t wake until almost 6:30, and that whole time I was thinking, “please, just let her sleep!” Her exhausted body desperately needed it.

June 29th vs. last night (Mate app that pairs with the Embrace watch)

I’m not sure how we made it through. I don’t think I’ve ever doubted myself more than during this period, questioning everything I was doing just to try to help her, while seemingly making it worse. But, if there’s one bit of help I can give, it will be advice that was given to me: lean in.

I was the lonely soldier. But I was losing. And I am so thankful that people saw me in my brokenness and reached out to offer support. So, if you find yourself in a similar situation now or in the future, know that to don’t have to do it alone. Lean in and ask for help wherever you can. Even the most simple of gestures can mean the world. I’m here too, if you need to talk, or for someone to listen.

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These days are hard

I’m currently laying next to Colleen, my hand draped lightly across her back, hoping it’s enough comfort for her to sleep. It is just enough in this moment to keep her peaceful, so I dare not move. Her sleep is barely tethered to the first stage it seems, and we are both exhausted.

Everyday is something different and it was my hope that by now, she’d be doing better. But, here we are, far past this being a “stage” and into unanswerable territory. Last Tuesday, desperate for answers, Colleen was brought to the local pediatric ER. I know it wasn’t an emergency at all, but I felt that if someone didn’t help, I was likely going to be the one in the ER. The anxiety has been terrible…

My fears of being judged for bringing her in quickly faded when they decided to admit her. I had suspicions about the root cause, but I needed answers. Because three weeks of this was far too much.

After regressing a lot in her areas, especially energy, her ability to walk and daily seizures and myoclonics, we were finally able to get neurology to add a new medication, a Onfi (clobazam). By day 4, it was clear this AED was controlling far more than her seizures. After a little back and forth and a trip back to Boston, we got the dosage down and side effects that were manageable. Not ideal, but still manageable.

It still proved to be too much, and her behavior steadily worsened. Colleen wasn’t Colleen. Which is why, after three weeks of violent tantrums consisting of throwing herself around, terrible sleep, insomnia, and biting herself or whoever she could get ahold of, she was brought to the Pediatric ER.

I don’t think a stone was left unturned. Blood work, MRI, new EEG…everything was normal. Which was a relief.

But it still left a big question mark as to why this was happening. Onfi side effects were quickly dismissed as not being possible that it was still in her system and capable of causing this.

Luckily, since there was such a huge team, a psychiatrist that saw her listened to our concerns and was able to find a couple of studies from the past that indicated that is was in fact a small percentage of the testing population that did experience these extreme side effects.

We are now currently going on a month of this and I’m still so tired. I am wondering if and when I will have Colleen back.

Throughout the day is so much better than before. We have been meeting her a pediatric doctor who specializes in behavior and have a plan. But, much of it is a waiting game.

I never would have imagined that something like this would have challenged me so much. I’ve felt so lost, hopeless and depressed. It’s one thing to be raising a disabled child and they’re doing well. It’s another thing completely to have her struggling so much, so sad, and to not be able to help her.

For the past few days, it’s been a few nights of okay (falling asleep by herself), then just waking up early, to just downright miserable. Inability to get comfortable, insomnia, smaller glimpses of her upset episodes.

I genuinely hope that by the next post, I can say this was a major hurdle we got through, but we got through it.

Epilepsy Blog Relay: Advocating for a non-verbal child

I wrote an article for the June epilepsy blog relay! Check it out here:

https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/advocating-for-a-non-verbal-child.html

March Epilepsy Blog Relay!

I wrote an article for the epilepsy blog relay! Check it out here:

https://livingwellwithepilepsy.com/2019/personal-epilepsy-stories/epilepsy-blog-relay-that-one-time-where-its-okay-to-be-a-helicopter-parent.html

I hate epilepsy.

I keep hoping I’d have better news to share, but the truth is that the last few months have been hard for Colleen.

At the beginning of November last year when we went to see the neurologist, we brought a list of all of Colleen’s regressions. It’s tough to look at. To see where she was and where she is now. 5 steps forward. 20 steps back. A medication increase really seemed to do the trick. And because there was room to increase a little more, we did. She was doing amazing in school and was able to participate and make strides. Her friends got to see their happy Colleen! Then the week leading up to Christmas break, she came down with the flu. We missed time that should have been spent with family. She slept a lot. Her myoclonic jerks increased.

And now, 4 weeks after she was finally rid of the flu, she’s still really struggling. I’ve lost count of how many times she’s had to come home because she was falling asleep. She’s had more bruises than I care to count from having her myoclonic jerks out of no where. I am sad for her. Her friends miss her and she has barely any energy.

Of course, I’ve been contacting neurology every few days. They’re going to get so sick of me calling that they’re going to have to do something. I’m just at a loss. They finally agreed to reduce her medication a little, and now we get to wait another week to see how she does. Praying this helps and she’ll finally get her energy back. And a little bit of freedom! I’ve had to put some toys away for fear she’s going to have another myoclonic jerk and hit her face again.

Here’s to hoping and praying my next pose has better news, health wise!

Simple Seizure First Aid

Looking for & finding answers.

At the end of the school year this past June, the amount of progress Colleen made was astonishing and I was excited for her to continue that progress into summer school. Her only setback during the time was a bout of strep but she seemed better after a round of antibiotics. Then, it was her Disney trip, which. I knew with the heat, was going to be a little tough.

Never would I have thought that she was going to struggle so much at the beginning of the school year. Between increased fatigue, myoclonic jerks, and seizures, there was obviously something going on. We ended up meeting with her school and got to see the progress she made vs where she was and it was clear there was a major issue. Two trips to the pediatrician to rule anything else out, like having mono or even something genetic like hypothyroidism, since that’s something I have. Her tests came back fine, which is both good and bad. Of course, I don’t want any bad results, but on the flip side, it’s stressful because there’s clearly something different.

Finally, last week, made the annual trip to Boston Children’s for her neurologist appointment. She had a EEG scheduled in the morning and then a follow up that afternoon. I don’t think I’ve ever hoped for a myoclonic jerk, but they’ve never been able to capture one during the EEG. She didn’t have one while awake, but they were able to capture one disrupting her sleep. I think this was a clear reason why she’s so tired during the day, especially if they’re waking her up so abruptly.

Post EEG nap!

Our original appointment time with her doctor wasn’t until 3:30, so we were going to try to find something to do, but they were able to page the doctor and gee her appointment for 1pm, which meant only a 45 minute wait! They actually initially told us they couldn’t get her in earlier, but with her being so tired, I let her sleep. While waiting, that’s when I found out we could be seen sooner!

We met with her doctor, I showed him the note from her teacher (she did an excellent job with writing things she was able to do vs now) and our own observations. I told him about the tests and thinking something would come back and the clear reason. Then we discussed options. While discussing where we could go from there, we had to call the pediatrician to get her med level results and found out that last year when we came, her level was in the 80’s. This appointment, it was only 65. We ended up deciding that we would increase her morning dose and could possibly increase a little more if needed. What I love about Boston and her doctor is that he really explains things in a way we can understand and works with us to try to come up with the best course of action for Colleen.

With a plan, we headed home. Friday morning, Colleen went to school and I prayed there wouldn’t be a phone call. It was a huge sigh of relief when her teachers told me she had the best day since the beginning of the school year. One little dosage increase can have that much of an impact?! And the answer is yes! Colleen has gained about 4 Ibs and has gotten taller. It made me realize that maybe she needs to be seen twice a year vs once, because if she’s growing that much, we need to be on top of her medication dosage.

I’m so relieved. Well, that may be an understatement. She’s worked so hard to get to where she is, it was hard to watch her struggle so hard in all aspects of her daily life. Thankfully, I can not recognize when it might be time, and of course, we have other plans just in case, because it’s really only been a few days.

And, as a final note, can we take a moment to discuss post-EEG hair? When her doctor was close, obviously we can go right home and give her a bath. They do as best as they can after they take the leads off to get the gunk out of her hair, but there’s only so much a washcloth can do. This time, they used a washcloth and baby shampoo and I was able to brush it and it looked slightly better. What do you do after an EEG? I kind of wish there was a room you could use just for a good hair wash!

Epilepsy Blog Relay: Life with Epilepsy

This post is part of the Epilepsy Blog Relay™ which will run from June 1 to June 30, 2018. Follow along!

The beginning

They were scary words that I didn’t quite fully understand the impact of immediately. After Colleen’s birth and being transferred to a nearby hospital’s NICU, we got the phone call that she had had two very big seizures and would need a blood transfusion. Colleen spend several days on a cooling mat, keeping her body temperature low as her body tried to recover. We couldn’t even rub her skin in comfort as the nurses said that it might trigger a seizure. I was afraid to touch my baby in fear I might set something off. (For a little explanation, Colleen had a blood infection and a subdural hematoma. Her body was going through so much when she was first born.)

Thankfully, she was released about 20 days later, and we went home with phenobarbital and keppra to keep her seizures under control. And the meds did! At follow-up neurologist appointments, we were told that she would likely grow out of them. Her EEG’s (an electroencephalogram, a test that detects electrical activity in your brain) always showed significant activity, and even silent seizures. This meant that while she was technically having a seizure, physically, we could tell. At one point when it was caught, she only stopped playing with a toy for a short second, and then went back to playing. I held out so much hope that at each EEG, we would see an improvement and that maybe, one day, we wouldn’t see any more seizures.

A big change

After work one day when she as 2, I went to pick up Colleen from her sitters and knew she wasn’t acting right. She felt very heavy to pick up, in a way that her whole body felt limp. I drove home, watching in the rear-view as she just stared upwards. When I got some, I noticed she would continue these staring spells and her eyes would very rapidly blink. I called the neurologist. Up until that point, I had no idea what a seizure would look like, and it was surprising to learn that there were many different kinds.

Over the years, we’ve had a few different doctors (her 1^stthat we loved moved to Texas) and a number of different medications. Currently, she’s on just Depakote sprinkles, but I fear with a lot of meds, it’s a fine balance between Colleen being able to function normally and controlling the seizures. It a very fine and frustrating line to walk. I remember at one point, after coming off of one medication, her teachers remarked at just how much more energy she had. It was a sad moment as a mother to know just how much she was being held back by medication but knowing it’s something she absolutely needs.

She’s had a few seizures over the past few years, at one point, they were occurring about once a week. These were the ones that we couldsee. And they were scary. I kept thinking to myself, “What happened? She was doing so well!” And still, quite frankly, the changes she’s had over the years is not something I understand completely.

Figuring out the future

Colleen is currently 6.5, and her biggest concern with seizures is her daily myoclonic jerks. She’s had a few which have led to injury. We had to take a trip to the ER recently to see if she would need stiches under her eye (thankfully, not!). No one wants to see their child struggle, and as a mother, I am committed to helping her as much as I can. We’ve looked into the possibility of a seizure-response dog and even the use of CBD oil.

In July, Colleen is having a second stem cell therapy treatment. While this treatment is for her cerebral palsy, I’ve read a few things in which it can help seizures. Colleen has made significant improvements in mobility after her first treatment, and we have so many videos from her teachers at school of Colleen walking without use of her walker. Just her AFO’s. While she had a neurologist appointment about a week after her first treatment, we weren’t told there was any improvement in the number of spikes on her EEG. After her second treatment, I will be excited to take her to her next appointment and know whether or not they have decreased.

There’s no doubt that there have been many challenges over the last few years, and it is something I wish I could take on instead of Colleen. But there’s no doubt that she’s a fighter and has been so strong over the years. With medical advances and new studies, I can only hope that as the years go by, her quality of life in dealing with epilepsy will only improve!

Creativity & Epilepsy

This post is part of the Epilepsy Blog Relay™ which will run from March 1 to March 31, 2018. Follow along!

A passion for creativity was something I hoped to pass on to Colleen. From a child to adult, I have always had a love for drawing, music, paint…anything in which I could create something of my own.

As Colleen has gone through school, her works of art decorate our home’s walls. Whenever music plays, she’s dancing, and even when it’s not playing, I want to ask her what music she has in her head as a smile alights her face as she bops back and forth.

One of the biggest challenges for us is that Colleen is non-verbal. I can give her these things to do, and I think she really enjoys them. And I have started to wonder myself; how can I use my creativity for a greater good; to bring epilepsy awareness. I have made a career in graphic design, and I have wanted to start and awareness campaign. Something that would just inspire people, almost like the way the Ice Bucket Challenge brought awareness to ALS. What can I do to help? What can we do to help?

So, as this month of the Epilepsy blog relay draws to a close, it is my hope to inspire all who read this to go out there and do something! If you can bring knowledge to just one person, I think we will have done a great thing because that knowledge will continue to be passed along. Maybe it’s photography? Take photos of everyone you know that has epilepsy. This will show you just how strong these epilepsy warriors are. Create something purple. Get people to ask questions. Create a poster for an epilepsy awareness event. I don’t have a definitive plan yet, but I will.

Spread knowledge, spread love. All you need is a little creativity. ❤

Seizure Response Dog?! & Make-a-wish

I’m at the inquiry stage of seeing if a seizure response dog would be beneficial for Colleen. Over the years, we’ve bought both the Embrace watch and Sami cam to help make sure Colleen is safe.

But, now that she is walking more and more at school at home, it’s still scary to think that at any moment, she could have a seizure or myoclonic jerk. That moment came last week when she had a myoclonic jerk right into her toy. With her face. Ugh..she was brought to urgent care since it looked like she might possible need stitches. Thankfully, the swelling went down and no stitches required. She was still left with a nasty black eye.

Thank goodness for frankincense essential oil! Waiting to hear back if a seizure response dog would be an option. I sincerely hope so, but it means we have to minimally fund $10,000 ourselves. I think we can do it! Also want to get her in for a second stem cell treatment!

In other news, Colleen was nominated for Make-a-wish! It’s still at the beginning stages for that as well, but I’m so excited to her. She decided that meeting Anna and Elsa at Disney would be her wish. I’ll keep you up to date when that will be happening!

Til next time,

Xoxo Jen