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 1stthat 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!

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Fundraising for Colleen

Hello, friends! It’s amazing to see all the notifications of new subscribers, and I hope you enjoy reading and can gain some knowledge about Colleen, cerebral palsy and epilepsy.

Over the years, I’ve heard about stem cell therapy, but I didn’t think anything like it would be possible, at least for a number of years. Then, last year, I learned about a doctor in California using stem cells to treat cerebral palsy using cord blood stem cells. I also learned that Duke university was doing a stem cell study. (Horray!) Sadly, they were looking for participants that were under the age of 5, and Colleen will be 7 this October. This, left the option of traveling to California for the treatment, but it is still a costly procedure. I so wish it was covered by insurance, so even though Colleen couldn’t participate in the stem cell study at Duke, I can only pray that this week lead to greater medical understanding and more treatment (and hopefully, insurance coverage.)

Until then, we have been trying to save and fundraise for Colleen. We have our downpayment sent and appointment booked, but we’re still short of our fundraising goal. Any size donation is greatly appreciated and will go directly to this stem cell therapy cost for Colleen. We are extremely grateful for those who donate, share and pray for our little girl!

Click here to donate. ❤

www.youcaring.com/Colleendoingtheimpossible

Progress!

Hi, friends. Ive been getting updates from school, and I’m so excited to share.

I’ve said before that communication is the toughest part of daily life. Colleen hasn’t been consistent with anything, like sign language or a communication device. They started using picture cards with her, with one choice she would definitely like and one not as desirable. At school, this works well when she’s eating. She has a clear choice, like the cheese puffs she loves and something like a notebook. Lately, she’s been capable of isolating her finger to specifically point to what she wants.

Colleen has much such great progress with her walking, so I just had to share.

https://youtu.be/e2djHb7l-l4

Stem Cell Treatment: Round 2

When I first found out about stem cell treatment, I found not only Dr. Shieh, but I found out that Duke would be doing a stem cell study, so I got in contact with them. At the time last year (June), they said the study would likely be sometime this year, so I had a decision to make. Do I take her to Dr. Shieh (at the time, we did not have the funds for the treatment or trip) or wait to see if we could get her into the study. Ultimately, we were able to raise enough to take her for treatment, so I went with that. And at the moment, I’m so glad I didn’t wait! Another IG friend’s daughter was accepted, and I found out that the children in the study had to be less than 60 months (5 years). Colleen will be 7 this October. I’m hoping with this study, stem cell study will become a more common treatment and not be considered experimental. I can’t wait to watch my friend’s journey, and hope they see the same amazing results!

After the success of Colleen’s first treatment, I knew I wanted to continue treatment, so she is officially scheduled for July 12th! I am ever grateful for the help of others as we try to raise enough for her treatment. Last week, I was honored to be granted a Workplace Wish. I coworker nominated Colleen and me, and I couldn’t be more thankful.

2018 has had so much happening (lots of highs and too many lows. Lows that I haven’t discussed yet, but maybe in the future). This treatment brings me so much hope and joy for Colleen. Let the countdown begin!

The epilepsy monster

It was almost like the epilepsy switch was turned off. Colleen had so much energy, her teachers started asking what we had started doing different. She was vocalizing, almost in a way she was expressing her opinion. And she had some much curiosity.

I’m realizing now that perhaps it was a growth spurt. This morning, I had to hold Colleen as she had myoclonic jerk after jerk. My heart aches for her in moments like these, as I hold her, exhausted in the aftermath. I had really started to hope that the stem cells and her growth were putting an end to the epilepsy monster.

But not yet. I keep fighting and I know to do that, I will have to do everything in my power. We have a donation towards her next stem cell treatment, so working towards saving enough for the next treatment. After much thinking, I started researching what she would need for a seizure alert dog. With how unpredictable the seizure activity is, I know this would be another way to make sure she’s kept as safe as possible.

One week post stem cells

I realize this is late now! But here is the post I started:

Friday was one week post stem cells, and I thought it would be good to share some things we notice with Colleen.

I will be honest and say that there was a part of me that was hoping after a few days, we would be able to witness something amazing. 9 days after, what we are seeing is Colleen using more should when vocalizing. Before, that was something that seemed to come and go. For the past week, she’s been using sounds that I haven’t necessarily heard from her before. In the car earlier this week and when I turned on the radio, it seemed like her little way of singing. I would so love to be able to communicate with Colleen more easily.

Second, is that she seems more focused on things and takes special interest. Like having her nailed clipped, she intently watched!

She had a neurologist appointment on Wednesday this week at Boston Children’s, along with an EEG. What I love about them is that they work with us to come up with a plan that everyone agrees on and are not interested in over-medicating Colleen. In the past, other doctors have tried to control the spikes on her EEG. Boston wants Colleen to be able to function at her best while having no seizures. Still awaiting results on her EEG, so hopefully I will find out after the long holiday weekend!

Our stem cell journey: beginning

I’m titling this “beginning” because after receiving the stem cells, I’m hoping to begin documenting changes we see in Colleen!

We traveled out to California on Tuesday. The flight itself was very nice and I couldn’t have been happier with JetBlue and with how well Colleen did on the flight!

I wanted to fly out a little early, just in case. If anything for delayed or canceled, it would have made getting to her appointment impossible.

I want to talk about everything (traveling, about LA and so on, but I’ll save that!)

Her appointment was at 9am Thursday. We brought her emergency seizure meds, diazepam with us, and it could be used to help her relax when it came time for the IV. While waiting for the diazepam to work, we went over Colleen’s medical history in-depth while she had a microcurrent on her forehead and neck. I wish I could explain it better, but it can be programmed to send a microcurrent to specific areas of the body. In this case, we wanted it to go to areas of Colleen’s brain.

After getting her history, Dr. Shieh programmed it to be more specific to Colleen’s’ needs. It’s very interesting to hear different ways it can be effective!

Speaking of having Dr. Shieh explain things better than I ever could, you can listen to a podcast of him explaining stem cells!

Part one here.

Part two here.

This hardest thing about stem cell therapy is definitely placing the IV. I didn’t want to have to fly all the way back if we had to reschedule so I was praying Colleen was relaxed enough. After IV was in, she wasn’t very happy and I was so worried about that IV so I tried to held her arm in place. Frozen eventually came to the rescue and that calmed her down! Whew.

The actual stem cells were delivered in a box with dry ice. (The tube is about an inch and a half long!) They come with paperwork with all the tests that were done. After the placenta is being donated by new parents, everything goes through the same testing as say someone donating blood would.

Some of the stem cells were also spaying into Colleen’s nose. After that, IV was taken out, and everything was done!

Some people wait a few months for another treatment, others wait 6 months to a year. Colleen has had enough donated through her YouCaring so we can have more than one treatment! I’m not sure how long we will wait, to be honest! We are also trying to buy the microcurrent machine to help as well!

And now we wait and see. I’m so excited to see what will happen with Colleen and what changes we may see. You can be sure that I will sharing! ❤