Sally has been wearing a helmet outdoors as a precaution due to the seizure activity and the drug side effects.
Hi all – When we last wrote about five weeks ago, Sally had just gotten home from NYPH-Weill Cornell Hospital where she had undergone an EEG which confirmed that she was experiencing myoclonic seizures. We had said that our first step was to select a specialist that would be on the same level as Dr. Steinherz, somebody regarded as one of the best in their field and experience treating kids suffering seizures post cancer treatment. We spoke to therapists, friends and even crowd-sourced on Sally’s Facebook page. One name consistently came up – Dr. Orrin Devinsky at NYU-Langone Medical Center in midtown Manhattan. Not only is Dr. Devinsky highly regarded, but he has extensively treated children battling seizures both on and post cancer treatment. We learned that he had a two month wait for an appointment, but luckily a friend at the hospital helped us secure an earlier appointment knowing the urgency of Sally’s situation.
A few weeks later we sat with Dr. Devinsky for our initial meeting, and instantly took to him. More importantly, Sally did too. We reviewed Sally’s medical history (which obviously took some time) and her recent brain MRI. Upon seeing her MRI he felt strongly that there was a connection between the damage to Sally’s white brain matter (from the intrathecal chemo) and the recent seizures, mentioning that he’s seen 40 other kids with ALL Leukemia with post treatment seizures. That number was eye opening to us as we weren’t sure if there was any potential for a connection. It also convinced us that Dr . Devinsky was the right doctor for Sally as he acknowledges that treating chemo induced seizures will differ from seizures caused by other reasons.
At. Dr. Devinsky’s office.
Unfortunately NYU couldn’t open Sally’s EEG from Cornell, so Dr. Devinsky was unable to prescribe any next steps. He did have us alter the medicines that Cornell had recommended which included upping the Keppra that Sally has been on for over a year, and holding steady the increasing dose of Onfi that Cornell had prescribed. Other than that, his hands were tied until Cornell would release their findings from Sally’s EEG. They did say it would be a good idea for her to wear protective headgear when out and about due to falls from both the seizure activity and the drugs. Here’s a short video from earlier showing her off balance and falling: Click to View
It took a 10 year old laptop, a new laptop, a cd-rom burner, a flash drive and a lot of patience (and some beers) to open Sally’s EEG from Cornell so that we could hand it over to NYU.
Over the next few weeks we saw some changes in Sally, both good and bad. As we mentioned in the last update, Sally’s appetite increased and she was finally eating well, a major boon for us. However, she was having trouble sleeping. After having blood work done at NYU, it was determined that Sally should up her Keppra dose. With that, we began to see an aggressiveness in our typical Sweet Sally, displaying a quick temper and often hitting. Throughout all of this, we saw fewer “jerks”, but an increase in blinking and changes in her state. While eating, she would begin blinking, and then lay back in her seat and refuse to eat. After a few moments, she would sit up and begin to eat and act normal again. At first we thought it was typical toddler stuff, but then one of Sally’s therapists pointed out that after not seeing any of the symptoms, she’s been seeing an increasing amount in recent sessions. During her latest session, Sally was withdrawn for half of the time leaving the therapist very concerned.
When her therapists become concerned, we become concerned. We finally received Cornell’s report and it read that Sally’s EEG showed: “epileptic myoclonus, epileptic status epilepticus in sleep and in correct clinical context is consistent with Lennox-Gastaut (Syndrome).” The mention of Lennox-Gastaut (LGS) had us extremely concerned as it can lead to severe regression as we’ve seen with cancer survivors. We shared the results and our concerns with Dr. Devinsky’s team, who shared our concern and worked to get Sally in for a follow-up EEG starting on Friday night.
Throughout the test Sally was wired and tethered at all times to a unit on the wall. Luckily NYU has a playroom and we were able to detach and reattach between there and our bed area, however you had to hold the line the whole time and follow her everywhere to make sure she didn’t pull them out. It evoked memories of making sure Sally’s IV wouldn’t catch anything at MSK. The first day was difficult, Sally was very aggressive with Nicole after increasing her Keppra dose again, striking her several times. Matt and William were with her Sunday, she was far less aggressive but very active.
This was the unit she was tethered to, we had to connect it to the wall wherever we went.
Over the weekend we learned that Sally’s EEG is very active. A typical person with seizures will have a handful of spikes on their EEG during a typical day, whereas Sally has them almost constantly. Of those spikes, only one a day translated into a full seizure, however the activity is concerning to us and the doctors. We’re still trying to figure out what the periods of blinking are, one theory is that these are seizure auras, pre-seizure static in the brain that can lead to a seizure. Those who experience them express various senses that indicate a seizure is coming and allows them to prepare for it. Although Sally gets these several times a day, they’re currently only materializing into a full seizure once a day on the current meds.
There are several drug and treatment options, each with their own side effects and impact on the body. Sally has her own unique medical background to consider. For over half her life she has received cancer treatment that has caused bone damage, toxicity to her organs as well as brain damage. This weighs heavily on us when deciding how to treat her seizures, we ask that you please respect our decisions. These are the current treatment options we discussed with the team:
- Keppra
- Onfi
- Depakote
- Ketogenic Diet
- Cannabis
All of these options have documented side effects except for cannabis which is currently being studied and is showing promise. One of the reasons we chose Dr. Devinsky is he is doing clinical trials at NYU with a strand of cannabis.
We’ve decided that as a first step we would increase the Onfi med to see what effect it has, especially since the increase in Keppra has led to too much aggression in her. Keppra and Onfi are the initial drugs that usually have the most success, so we want to start there before introducing any new options. As of now, it has improved her EEG and today was the first morning she did not have a seizure while at NYU. Based on these initial results, we agreed that we could discharge Sally and monitor her at home over the coming weeks.
She was so well behaved while having the wires removed, the technician was amused.
From there we just have to take it a day at a time. We’ve learned from other parents with kids who are having seizures post ALL Leukemia treatment that our kids have a different progression with seizure activity. Some go through periods where the seizures stop but then return, and most exhaust all of the medication options eventually. We’re fully realizing that this is likely going to be a long process with Sally, where we will constantly have to alter her doses and drugs. All options are on the table, however we also know that time is of the essence, it’s extremely important that we get this under control as soon as possible before any regression can take place.
Knowing that her initial EEG at Cornell indicated a Lennox-Gastaut pattern (there are other criteria for this diagnosis), the potential for this to go down that path is worrisome and will keep us vigilant. Three years ago this week we were beginning our journey at Sloan Kettering. We were sent home thinking we had dodged the Leukemia bullet, only to have it resurface for good a few weeks later. Those memories are still raw for us. Although we may have the seizures under control today, we know that can change in an instant.
We’re scheduled to follow up with Dr. Devinsky in four weeks assuming Sally’s condition is stable, he may want to do a follow up EEG as a status check as it’s impossible for us to watch her 24/7 for any potential seizure activity. In the meantime, the boys finish up many of their activities this weekend so are looking forward to finally trying to get out to the cabana and enjoy the summer together.
Please keep Sally in your thoughts and prayers, thank you for your continued support.
Matt & Nicole
Good call on the Keppra…def makes me more irritable but I’ve been seizure free for 8 years because of it. And I refuse to believe anyone would misjudge you for trying anything that may work on Sally…do whatever it takes to get her functioning and developing as she should. Much love to Sally and the Kabel family!
I am glad that Dr. Devinsky is doing trials with the cannabis. I have read so much on this as treatments for cancer and the seizures. It is like a miracle drug where it is curing cancer.
As always, Sally and your family are in my daily Prayers. Keep the Faith.
A fellow Bay Ridge neighbor.
Theresa
You will make the right decision for Sally and no one has the right to judge your decision. You have made all the right choices up and including today. I hope you can enjoy your family summer and your Breezy cabana. Only good thoughts and prayers for Sweet Sally and the Kabel Family.
Sweet girl
I have a friend with a daughter, turning 16. She has damage from hydrocephalus. They are making the decision for cannabis. You just can’t beat it …. Coming from a person on topamax (yuck)
I wish you and your family peace and happiness. It is not an easy road but God gave Sally wonderful parents that are doing everything they can for their little girl. She is in my prayers.
As always with you in spirit Nicole and family. Kristi Sally looks so grown up!
Wishing you fortitude, clarity and humor.
Matt, if you have any question about pediatric use of cannabis for seizures feel free to IM me. I now run state- licensed medical cannabis dispensaries in Maine and would be happy to help in any way I can. This is definitely a consideration in Sally’s current situation. Sending you all lots of love and courage, PR
Darlings,
Your devotion and care for Sally and the family is amazingly beautiful. You are in our hearts and prayers. Xoxo
Bozena and Kasper
Matthew& NICOLE
I HAVE A CARD THAT WAS MADE BY ELANAS SON ROBERT HE IS AUTISTIC, I HAVE MAILED ALL BUT SALLYS,I JUST NEED AN ADDRESS R PO BOX NUMBER IT HAS A GOLD CHARM ON IT, ENGRAVED WITH THE WORD HOPE, I WOULD LOVE FOR IT TO BE SEWN ONTO SOMETHING SALLY LOVES AS IT IS IN THE SHAPE OF A GOLD RIBBON, YOU CAN PM ME HER ADDRESS I HAVE ALREADT PM MATTHEW BUT NO RESPONSE, I AM FROM WHEELING WV AND HINES IS MY SWEETY, NOT SURE IF YOU EVER MET THE ROTRIGA FAMILY, THEY GO TO SLOAN AND I STARTED FOLLOWING SALLY AFTER BUYING HER NAIL POLISH FROM BREES COMPANY THANK YOU FOR READING THIS XOXO LOVE SUSAN
Oh Sweet Sally, I hope you spend your whole summer playing in the sand and napping with an ocean breeze.
Good luck with the medication, whatever road it takes you down. I’ll always have your back.
You might want to contact Facebook “prayers for Sophie”. She has a brain tumor that is being treated with cannabis as well as chemo…maybe her parents can give you some insight regarding their experiences with cannabis.
My prayers ad thoughts as with you and your family. Good luck to sweet Sally sunshine.
In My Prayers Daily…and throughout the day as well…Please Stay Strong and feel the Love from one Mother’s Heart to another…(PS I’ll never forget the post where you shared your Husband sings you are my Sunshine to her…) .and her Brothers too…the whole family is in my Prayers….AMEN.
My son had febrile seizures as an infant so I can relate to what you are going through. I must have seen a half a dozen neurologists if not more. Phenobarbital made him so hyper. He had language delays so Depakote was recommended but with that came the need for blood work to make sure the levels were where they needed to be. I too prayed that I was making the best decision with medicines that had some serious side effects but would hopefully keep him from possibly having another seizure. Matt and Nicole you have been treading ever so carefully on this journey and with every step making the best decisions that you could possibly make for Sally’s best interest. You have my continued prayers and utmost respect.
Hi, I’ve been following your blog and fb for awhile and have never commented before but I just wanted to reach out and let you know that while I’m not a religious person, your family and sweet sally are in my thoughts, and I will send any positive energy and prayers that I can send your way. You are incredible parents and you will always know what’s best for your baby. It’s heartbreaking witnessing a beautiful little baby have to deal with so much pain. I wish so much for her to be a healthy and happy kid and for you all to have some peace. I imagine that words are little comfort, but I do hope that all the prayers and hopes of the many people whose lives have been touched by Sally make some kind of difference for you all.
Sending love and positivity to you all…Keep fighting the good fight, Sally Girl. You got this! <3
Vous seuls pouvaient savoir ce qui est le mieux pour Sally, nous savons que vous êtes des parents formidables , vous devez vous battre avec et pour Sally, nous prions pour que chaque jour soir un jour meilleur. Nous pensons aussi aux garçons qui sont des frères formidables mais également des enfants.
We will continue to pray for you all. Cannot even try to imagine what you guys are going through again, but stay strong.
I am glad that you have found a doctor that you and Sally are comfortable with. I have heard many good things about cannibus treatment for epileptic seizure disorders in children. (I wish is was a treatment therapy when I was a child. I would have tried anything). I am glad to see that you are willing to try multiple options of therapy to help Sally. You are great parents and will do what is best for her. Good luck! Prayers for Sally.
We love you and are always thinking of you and Sweet Sally. xo
hello i am praying for your sweet daughter and family I have an 8 year old son you has Lennox Gastaut Syndrome.. He was diagnosed at age 4. If you have any questions or would like to talk I am more than happy to help. Our sweet boy Aaron has had a wonderful experience on the Ketogenic diet. We went from over 50 seizures a day to only a few a month. Jess_fitch@yahoo.com
So sorry to hear the latest news. Renewed prayers for Sally and all of you, that you keep feeling the hope and strength all of us send you way every day.
I too am on Kepra and never knew that it could cause aggression. I’ve noticed recently that I feel on edge all the time. Now I will discuss that with my doctor. I do have an acquaintance, who against doctor’s advice, has been giving her little guy cannabis and his seizures have stopped entirely. You are all in my thoughts and prayers. God bless you all!
My niece was 2 when she started severe seizures. She was on phenobarbital (perhaps more)for at least 4 years. She is now 35, healthy with three children. Whatever works try it. I Think of sweet Sally a great deal. Good luck.
So it means all this damage in her brain, is because she was a baby receiving Chemo?..or it can happen also to kids any age? ..I didn´t know this could happen..how complicated it is..Im really, this was suppoused to be a quiet and fun summer for you..
I really hope it still is!! and this can be under control..
Hi Matt & Nicole
This is Mariam . I am sorry to hear what Sally has been going though. She is always in my prayers. I have a friend whose son is having a ketogenic diet to help seizures. Pls look into it. You can msg me if you wish to speak about this.
Love
Mariam Ariane’s mum.