Day 14 of ACTH

I will start with good news this time. I reordered Marek's ACTH yesterday and they told me it would be here today. It took everything I had not to laugh at that while on the phone with the representative. But to our surprise the doorbell rang at 9:30am and his remaining three vials of ACTH arrived (it still amazes me that these little vials cost $28,000 each). I can now breathe a little easier knowing he will not be without the drug.

Now to the not so good news. Marek had a rough night last night. He woke up at 11:30pm and didn't go back to sleep until 5:30 this morning. He was so uncomfortable all night, he continuously grunted and cried. We tried a bath at 1:30 am which seemed to work. While in the tub he was content. He took an hour bath and then we fed him, as soon as he finished his bottle he went right back to crying and grunting (as if he was in pain). We tried giving him a bath again at 4:30 am but this time it didn't work. We felt so helpless trying to calm him down. We tried Tylenol and Orajel just in case he was uncomfortable due to teething, but that didn't put a dent into his tantrums. Once he finally fell asleep this morning he only slept for two hours.

We are still on this awful seizure roller coaster. We have a good day where we think "okay maybe this is it" then the next day he is having 20 minute or longer seizures. It is frustrating because I have read so many stories where ACTH has stopped the seizures after the first injection and I can't help but feel jealous of those families and wonder why doesn't Marek deserve that? It makes me so angry! We have one more day at high dose, I have to stay hopeful that maybe tomorrow will be Marek's day for the medicine to finally work. When this whole nightmare started I thought to myself, "I have never been so scared in my life" and that was when we had every medicine that has been proven to be successful with treating IS in front of us. I retract that statement, "NOW, I have never been more scared in my life." We have tried and failed more drugs at this point than there are left out there to still be used to treat IS. We really need ACTH to be our miracle.

Things are getting increasingly harder to bear as we move forward with ACTH. Marek's irritability is at an all time high (I am writing this post from our bathroom where I spend most of my time since it is the best way to soothe Marek). I only get to see a smile from my son every few days now. I am in disbelief at how quickly things change. Just Monday he was socially interacting with his therapists and now he just stares into space in the moments when he is quiet and then will start another grunting and crying fit. His poor little brain isn't getting any rest since he is never asleep. Mom and I drove all the way to Lake St. Louis today and back just to help him nap which was a three hour drive. As far as the injections themselves go either Marek is getting smarter and now knows that when we put him on the counter and give him a bottle that he is going to get pricked or his poor not so little legs are starting to get sore from all the injections because we cannot keep him content during his shots anymore. He screams through each one now making it twice as hard to give them to him. Like I have said before I just want all of these horrible things that are associated with this drug to be worth it for Marek's sake. I will gladly stay up all hours of the night, drive all over this country and spend my whole life sitting next to a bathtub watching my son soak if I could be promised that he would be cured of IS.

Yesterday I emailed Marek's doctors a list of questions and concerns because I have started to question whether his medical team is being as aggressive as they should be in treating Marek's IS. I told him that our research on IS has lead us to families who have had success with "drug cocktails". I told our doctor that we want to add another medicine to Marek's treatment plan. I also asked how many children respond to ACTH after the weaning process starts? His neurologist finally called me today to discuss our concerns. After consulting with the other Neurologists at Children's he is going to start Marek on Clobazam tomorrow (IF insurance cooperates). He told us that Clobazam is not a magic bullet when fighting IS but maybe it will help the ACTH clear up Marek's Hypsarrythmia. In regards to how many children respond after the wean, he told me "its hard to say." I still have no idea what the hell that means!!! Staying on the optimistic side (which is hard to do every day) I will translate it as there is still hope. He ended the conversation with me by saying that he would not consider ACTH a failure yet. I am to check in with him tomorrow morning to see if our new drug was approved by insurance and to schedule a time to pick it up. FINGERS CROSSED! Marek's epileptologist got back to me this evening and told me he rarely sees patients respond to ACTH later on but has seen a few cases in which the patients respond at the end of week two or early week three. (End of week two is tomorrow for us). However, he did discuss an option on ACTH that we will be discussing with our neurologist tomorrow morning as well.

Ryan told me that there was an amazing turnout at Applebee's yesterday. Thank you to my CHS family for organizing that and to everyone that went out to eat and to show their support. I have to keep telling myself over and over that it is impossible for ACTH not to work when there are so many people out there praying for Marek. Please keep the prayers coming, a seizure free tomorrow would be the best blessing in the world. We love everyone that has been behind us during this fight!