Increased Seizure Activity

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Photo credit: Teri Brennan

Hi everybody – It’s been two months since we last updated you on Sally, she had just finished her first day of school and we were adjusting Sally’s meds after seeing a lot of seizure activity. For about a month we saw a stabilization of Sally’s seizures after increasing her Onfi dose.

However a few weeks ago we started to see an increase in both the frequency and intensity of Sally’s seizures. After speaking to other parents with children experiencing post cancer treatment seizures, and doing a lot of research, we decided to start Sally on Charlotte’s Web, a cannabidiol (CBD). It’s legal in all 50 states and contains virtually no THC, so there is no “high” associated with it.

We’ve known a lot of parents who’ve had success with CBD, so felt it was the next best option. Sally has been on an increasing dose of the oil for several weeks along with the Onfi, however in that time we have continued to see her seizure activity worsen even more. Sally will either stare off into space or become disoriented for several minutes at a time. Her head will usually jerk every few seconds, a myoclonic jerk seizure, but recently her arms (and sometimes legs) will jerk up as well. We have not seen that behavior since this started months ago. One day Nicole counted 38 jerks, and stopped counting because it was too hard to. This is the most intensity we’ve seen since before summer and are often seeing the activity occur almost every hour. This is a video of Sally during one of these periods, she’s disoriented, spaces out and is unable to hold a thought. Click here to view.

We really hoped cannabis would be the solution, but does not appear to be. We decided it was time to reach out to Dr. Devinsky’s team to discuss next steps, assuming they would tell us to switch Sally to the Ketogenic diet, an earlier recommendation of his. We were surprised to learn that they instead wanted us to start a new drug, Depakote. Their reasoning was that the diet would take several months to have an impact, and we needed to stop Sally’s downward trajectory NOW. We started Sally on a third drug (Onfi, CBD, Depakote) this weekend, and are keeping a close eye on her to see if it has any effect.

This increase in activity has us extremely concerned, especially as we start to eliminate potential solutions. We honestly don’t know where this is going. Sally has some understanding that it’s happening, she’ll often come up to us and ask to be held when her activity is starting. Sometimes she’ll even say “having seizure”, which is heartbreaking to hear. The boys have become good at recognizing her activity, and are quick to alert us.

We are trying to continue on with life and keep Sally busy. We signed her up for a dance class, it took a few weeks but a very patient and understanding teacher finally got her to start participating and she loves it. She asked to “Go dance with Ms. Tabitha” when she woke up yesterday, and again later in the day, and asks us daily to dance the Whip and Nae Nae with her.

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Ms. Tabitha at Beyond Dance has been very understanding of Sally’s situation and patient with her.

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Sally demands her brothers join her in class when they’re with us, how can they say no to their little sister?

School has been a bigger challenge for Sally, who is two years behind the other kids in their development due to the isolation and effects of cancer treatment. We are in the process of moving her into a smaller class of 12 kids where she can get more attention and hopefully be less overwhelmed. We’ve had to begin the process of deciding what to do with her next year. As of now, we are not comfortable with sending Sally to Kindergarten, although she is strong in some skills, she is clearly way behind in others. We’re exploring holding her back a year, or switching her to a private school with additional services. Both options are on the table, and both will require a long and arduous process over the next several months.

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“A blue dress” – When asked what Sally wanted to dress up as for Halloween. OK then.

We’re taking everything in stride. Every night Nicole thanks God that Sally is still in remission, but asks if he can please stop the seizures. That sums it up, we know we are lucky to still have Sally with us, but that cost keeps revealing itself in increasing amounts. Every option is on the table.

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Anybody who has followed Sally knows Christmas has always been our favorite distraction, and will be again this year. She helped us decorate the tree yesterday.

Please keep Sally in your thoughts and prayers, she could really use them.

Matt & Nicole

23 Responses

  1. Shirley Parks
    Shirley Parks November 7, 2016 at 10:37 pm | | Reply

    Sending lots of prayers your way….love her little face.

  2. McHugh
    McHugh November 7, 2016 at 10:40 pm | | Reply

    We love you Kabel family and are praying, Ride Sally Ride God bless and let’s keep the faith

  3. Jennifer James
    Jennifer James November 7, 2016 at 10:42 pm | | Reply

    TEAM ROAR ran for Sally yesterday and we will keep supporting her with lots of love and positive energy. Love you guys – Love, The James Family

  4. Linda Belanich
    Linda Belanich November 7, 2016 at 10:54 pm | | Reply

    Praying for you Sally xoxo

  5. Lucy
    Lucy November 7, 2016 at 10:56 pm | | Reply

    Prayers sweet baby !!! 🙏🏼🙏🏼🙏🏼❤️️❤️️

  6. Christine Hdoges
    Christine Hdoges November 7, 2016 at 10:58 pm | | Reply

    Sending many prayers for your family and hopes that a breakthrough in treatment will right the course. God bless and keep you.

  7. Dorothy Hurt
    Dorothy Hurt November 7, 2016 at 11:11 pm | | Reply

    Prayers for all of you. Keep dancing Sweet Sally Sunshine! It was disheartening to watch the video.

  8. Linda
    Linda November 7, 2016 at 11:28 pm | | Reply

    Prayers for your Sweet Sally Sunshine and your family. Praying the new drugs will help Sally to be seizure free.

  9. Joyce MenDell
    Joyce MenDell November 7, 2016 at 11:43 pm | | Reply

    ❤️.. my heart aches I wish someone out there had answers for you.. you all have been so strong as well as Sally dealing with this.. I pray that this will work for Sally ❤️🙏🏻, she deserves it she’s had to endure so much more than some adults …😞 GOD Bless you all sending positive thoughts and prayers your way .. 🙏🏻❤️🕯🙏🏻❤️🕯

  10. Sam (Murphy) DiRaimondo
    Sam (Murphy) DiRaimondo November 8, 2016 at 12:04 am | | Reply

    Continued prayers for little Sally and you all!

  11. Ethnea Porter
    Ethnea Porter November 8, 2016 at 12:22 am | | Reply

    Sally and all the Kabels are always in our prayers.

  12. michelle olveira
    michelle olveira November 8, 2016 at 6:25 am | | Reply

    I don’t know if this is the right school option, but I’ll put it out there…PS 682 (TAOTS). My son has Asperger’s and is in a special program, but the school is excellent and has therapists of all kinds working with the kids throughout the day. The classes are all general ed, but some have a few kids like my son mixed in with them. Some kids were in Intensive K, which doesn’t apply to Sally for kindergarten, but it means they had a two-year kindergarten instead of one because of the autism setbacks. However, this would mean that Sally wouldn’t be the only one in her class that was behind, age-wise, and maybe it would help her situation. I adore the administration and guidance dept there too. I feel they would work with you on everything. 7186212730, in case you decide to give them a call. Not far from you either. Good luck to Sweet Sally.

  13. Ginny Milker
    Ginny Milker November 8, 2016 at 7:01 am | | Reply

    Sally you are in our prayers…Your mommy and daddy are amazing!

  14. Sister Virginia
    Sister Virginia November 8, 2016 at 10:40 am | | Reply

    So sorry to hear about the latest development. You are remembered in my prayers every night. God bless Sally and her family.

  15. Beth
    Beth November 8, 2016 at 11:53 am | | Reply

    Always praying for Sally and your family.

  16. Ethnea Runfola
    Ethnea Runfola November 8, 2016 at 12:27 pm | | Reply

    Mat, Love & prayers are with you & family.

  17. Sandra
    Sandra November 8, 2016 at 2:52 pm | | Reply

    Love, prayers and special thoughts to Sally and her parents and her brothers. Keep dancing Sally and that smile on your face melts my heart.

  18. Colleen Price
    Colleen Price November 8, 2016 at 4:38 pm | | Reply

    Matt and Nicole…yes yes yes Sweet Sally Sunshine has been continuously in our hearts and prayers. Please, Oh Heavenly Father, guide Sally’s Medical Team with vision and knowledge to make recommendations to reduce, and ultimately eliminate, Sally’s seizures. God, continue to hold this beautiful family in the palm of your hand, blessing them with strength, faith, and hope. Amen. ❤Aunt Sarah’s friend, Colleen

  19. C Sanossian
    C Sanossian November 8, 2016 at 7:50 pm | | Reply

    Sally, and the rest of your family, are in my prayers. Please know that Dr. Devinsky and his team are the very best in their field. Our little girl has been in their care for several years, and we thank god for their expertise. I hope you consider theKetogenic program, despite how challenging it sounds. It amazed us to find that we could keep our daughter on the eating plan and still eat out, and send her to school and parties etc. for our little girl it was the only thing that improved her eeg – more than than Depakote, more than Onfi, and more than even they expected. The medications can do wonders, and our daughter stayed on them during the diet, but once off the diet the eeg was poor again. I would recommend joining FACES, the NYU support and education program, and that you connect with other families who walk a similar path – it helps to feel understood and to see that better days lie ahead. Sally is lucky to have such amazing parents.

  20. Geri Mc Gill
    Geri Mc Gill November 8, 2016 at 10:20 pm | | Reply

    In my prayers

  21. Laura
    Laura November 9, 2016 at 8:19 pm | | Reply

    Matt and Nicole you and Sweet Sally are in my prayers.

  22. Tom Miller
    Tom Miller November 9, 2016 at 8:29 pm | | Reply

    Prayers for Sally and the Kabel family

  23. Anne Lackritz
    Anne Lackritz November 10, 2016 at 11:47 am | | Reply

    Sending thoughts and prayers your way. Sally is a strong and courageous kid with such a loving and wonderful family. God bless you all.

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