In the last few weeks Cole has had a downward spiral. For those who have been asking and have Dravet kiddos of their own, here is the list of things that we have tried and the rundown on what has been happening. This isn’t even the half of it, but for record keeping purposes I will hit the highlights.
October-Cole starts seizing more often. At this point we have practically stopped using benzos and rescue meds in general. He has once again become immune to them and we fear withdrawal symptoms. Also, in prep for starting Onfi. Only used rescue meds 3 times all month. We go to Camp For Courageous Kids. I still need to write about that. It was wonderful! Had our first 3 Tonic Clonics in one day. We stopped Potassium Bromide in late August and the month of getting it out of his system has ended. Start Onfi. Largest break in between major seizures was 4 days. Every seizure looks different. Different types, different times, different lengths. There is no regularity or ability to predict what is coming next. This has kind of been the theme of Dravet, but this year has just been mind blowing. It makes Sluggers job extremely hard and training new nurses difficult. 17 major seizures recorded.
We prepare for Superstorm Sandy. End up evacuating anyway. We were gone for 5 days. Drive 14 hours home. The next day, Daddy leaves for NYC to help with the aftermath. He is gone for 2 weeks.
November-Get a small break when we increase Onfi. Have 7 days with no major seizures. Then things get hairy. Daddy is still gone. Have a nurse quit and so only have coverage 3 days a week. Start Anat Baniel Method Therapy. It is a very slow process with Cole and his sensory issues. He doesn't like strangers to touch him.
Cole starts having at least 2 tonic clonics every day. Nothing is stopping them. Onfi, double Keppra, and rescue meds are hardly working when we use them. Still using all rescue meds and double Keppra sparingly. Cole starts having major regressions. Reverts back to oral phase, acts a lot like an infant and starts sticking every thing in his mouth. Has some potty accidents. Loses some of the songs he knew before.
Brian comes home and the next day we leave for Miami. Read about our Florida adventure HERE. 24 major seizures recorded, not counting nocturnal.
December-We drop the rest of the Onfi. Cole finishes his amoxicillin on the 1st. We get ready to start Verapamil. Want to go back to school and get settled into routine before we start something new after all of the travel. Silly us. The 2nd reintroduces daytime TCs. It is so weird how he has a honeymoon every time he is on high dose antibiotics. We start a love/hate relationship with 911. We call them at least once a week all month. If you know us at all, you know that it is totally abnormal for us to get to our breaking point so often. Cole continues to live his legacy and stops seizing once we call, or once the paramedics show up. Whether we wait for 29 minutes or 8 minutes, the story is the same. It does not work if we pretend. He knows J We have to be serious and dial for real. We start the Verapamil. Cole catches a cold the first day he goes back to school and shares the love with Mom and his main nurse. We stop the Verapamil, after one whole day! Still not sure if it works for him, but we couldn’t know while he was sick. Also didn’t want to take the chance of a major drop in blood pressure when he was ill. We take him to the doc, strep negative, flu negative and throat culture is negative. He loses his voice and looks horrible, but still has some stamina. The entire month the longest break he has from tonic clonics is 2 days, and that only happened once. The myo’s abound. The TCs ramp up from 2 a day to 3 a day. Every single day. Cole regresses further and does strange infant-like behavior like chewing on his feet and licking the floor. We try double doses of Keppra, since that helped on the airplane in Florida, kind of. It helps maybe 1 out of three tries. Mom gets super sick and wants to curl up in a ball and hide. We don’t have nurses, so this makes things interesting. Cole, per his M.O. continues to be sick, for a long time. At this point, Cole has been de-sating to the 30s and 40s during major seizures and will hover for minutes even with 5 Liters of oxygen. He is congested and occasionally coughs, but it is just a virus, right? We throw around the idea of possible pneumonia. I am talking to the pediatrician daily.
It doesn’t matter what we do. If we use rescue meds, the seizure doesn’t stop. When we used to administer medication like Diastat or Versed, at least it helped to prevent future seizures that day and would give him some sort of a break. Cole is seizing again within a few hours, even with Diastat. Has 26 major tonic clonics (this is not including the short nocturnal ones) in 12 days. During all of this we call Dr Miller. He suggests that we start Bromide again for a short-term solution. We know that he broke out in a rash about 2 ½ weeks in to it before. So, back to dog medication we go. Immediately we notice that Cole’s speech declines. By the second day, he is slurring his words. By the third day, he is drooling even without seizures. We are just looking for a short-term solution. Something to just break the cycle of seizures. We know that Cole can’t handle long term Potassium Bromide. We see our son slipping away from us. Call Dr Miller again. Don’t want to wade into any more old medications. We could start increased eye fluttering, maybe even those evil drop seizures could come back?! Things are already bad here, why would we want to possibly make it worse? So, we get into “illogical and completely bizarre” territory. Discuss things like IVIG or prednisone. Heaven help us, ACTH comes up. Also high doses of antibiotics…to control seizures. Illogical. Remember how Cole had a honeymoon with the Amoxicillin? As bizarre as it seems, some kids with Dravet have decreased seizures on high doses of antibiotics. There are side effects, but it is less risk than steroids. So-we decided to start 3 days of 1000mg Rocephin shots, that day. Cole gets 6 huge shots in the behind. Fun...not really. Dr Miller wants to keep up the Bromide for a week and we talk about steroids as the next approach. By now, we are on the fourth day of Potassium Bromide; Cole can barely speak at all. He is drooling like an infant and does not want to eat. His gait is slowing. He is grabbing his face before a seizure, going tonic and then scratching himself. He looks like he has been in a fight with a rabid raccoon. Perfect for those family pictures next week. Brian and I decide to take him off Potassium Bromide. This entire time we are vacillating between deciding to go or not to go home for Christmas (cross country flight). The next morning, Cole wakes up shaking like I have not seen him for a long time. The tremoring and myoclonics are so intense that his whole body is involved. Almost into tonic clonic territory. We wonder if it is due to this, due to that. Always having to play detective. We give him a double dose of Keppra and 5 mg of diazepam. Decide to continue with the antibiotic shots. I say, "We are not going home". Cole improves throughout the day and regains some speech. He still sounds like a drunken sailor and cannot say the ABCs, but hey…he is talking! We’ll take it!!!
The entire day of the 2nd antibiotic shot, he does not have a tonic clonic. We are still holding our breath, but so grateful for the small break for our child. His color starts to come back; he doesn’t look like death warmed over. Day 3 of the antibiotic (today), at the time of publishing, he has had two big seizures. Better than 3! So-if you really feel like nothing is working and your child just keeps clustering no matter what you do, go out on a bizarre limb and try high doses of antibiotics. Or maybe not. It is not a long-term solution, but worth a shot. I think. 31 major seizures recorded, not counting nocturnal, and we have 11 days left.
I still don’t know if we are going to go home for Christmas. But really, what if this is his last Christmas? Won’t we regret staying just because we were scared? Our life the last few years has taught us to live to the fullest. So we will probably put him in a drug-induced stupor, board that plane and hang on for dear life. Who needs performance enhancing drugs, bungee jumping, marathon running and rock and roll? Just get a child with Dravet Syndrome and you can have all of the adrenaline rushes you could ever ask for! J