Here we go...
The journey begins. I am going to begin by apologizing for the amount of times i say 'journey'. If you have met my mom, you will know I get it honestly.
Without getting into the entire week, I just want to practice being concise... OK, here goes the cliff notes. Luke's seizures have been gradually increasing and getting more intense for a while. He has gone to 3ish a day to 15ish a day and these bad boys were not playing around either. We upped his Afinitor (I will do a blog on his meds because it is a big piece to understand if you want the whole picture) hoping to get some seizure control but we went up too far. The only real side effect we see from the Afinitor is lowered immune function and mouth sores. Well we had both side effects like a mofo. He was up all night, not eating, drinking, walking... you get it.
We had the infusion scheduled for Friday, but Monday night was so rough that Cincinnati was able to get us in Tuesday afternoon. We got up there, got the infusion started, made some pretty drastic med changes, treated the mouth sores, and had the conversation. I have had these conversations before, the kind you know you will never forget what the other person was wearing, what was on tv, or the sound of the leads beeping in the background. Karen and Dr. Franz came by the floor to see us even though we didn't have an appointment. I was so shocked to see Dr. Franz that I hugged him. He is one of those people. His presence is safe and strong and peaceful. George Ross, the pastor at Northside Church, is the other person that has that. The room is warmer when they are there. So the conversation highlights... Sabril is a med that Luke has been on since he was 4 weeks old. It treats a special kind of seizures found in kids with TS called infantile spasms which Luke never had. This med, Dr. Franz explained, had done its job, kept away these IS and now was working against Luke and could be making him toxic. We cut the med by almost half and we would be monitored at the hospital to see how he handled it. Also, we decided to hold the Afinitor. The Afinitor keeps Luke from having 30 seizures a day. It is also works on his other organs to limit and shrink tuber development. It also suppresses Luke's immune system, thus the reason we get IVIG infusions. So, because the med slows Luke's body's ability to heal, we had to stop giving him the med so his mouth could get better faster. This is always scary for me. The last time we took him off the Afinitor for a while his seizures went through the roof. But its the only way for him to heal when he gets sick. Next topic, Vimpat. Vimpat is, really, just another seizure drug to try that they have had some success with in TS patience. Steve told me a statistic once (I'm going to make up the numbers a little) that stated your first seizure med has a 60% of working, the second a 30% chance, and by the time you get to fourth or fifth it has like a 2% chance. We could very easily be on #10. So we will try but the odds aren't great. Dr. Franz said the odds aren't as bad as winning the lottery. We have a shot this could work, a little or for a while. But this brings us to topic three of our impromptu meeting. Luke needs surgery. Surgery at Texas Children's Hospital is a go. We are going to make these changes in the meantime, but even if they work, Luke's seizures do not respond to meds willingly. We may have control for a while and they may even cut them in half, but when you start with 30 seizures a day, half still sucks.
Seizures suck inherently. There is nothing good about them, but we have even more of a sense of urgency because of these bastards. Luke has regressed. He was babbling, waving, even blowing kisses. All gone. We had him evaluated a few weeks ago and cognitively he is functioning at around a 8-10 month old. The other reason, obviously, is Luke's safety. When Luke has a seizure he falls... hard with no break to the fall. He wears a helmet, but that doesn't protect him completely. We have had to get stitches in his chin which has later gotten infected. It is a constant concern for us all and we have limited the amount that we experience out of fear and caution for Luke.
So, this is where we are. Just turned three, 15 seizures a day, sweet as can be, second surgery within the year.
7/10/2016 07:13:43 pm
Precious, precious, boy... Who has the strongest momma I know! I'm so glad I found this blog! Love u Steph and your sweet family! Prayers for you all daily! Xo
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Mother of two amazing little boys, one who just happens to be a TS warrior.