The next step

It is easy to complain. It is sometimes much harder (at least for me) to see the Light in the midst of darkness. I have been inspired by several people I know who are fighting cancer and who have given a great gift by their simultaneous acknowledgment of the darkness they feel and their articulate praise for the Light they see even within that.

First, our darkness. Micah continues to have between 30 and 40 seizures per day. They remain the  "drop seizures" that he has been having for the past year. He continues to wear his helmet most of the time he is awake. The new medicine we tried for him in the summer, which has some serious risks but also had some success among children with Micah's seizure disorder, has not worked. If anything, he has more seizures now than he did a few months ago. We have been very discouraged. His verbal skills continue to progress at only a glacial pace, which means he has a speech delay in spite of speech therapy. Darkness.

Then last Wednesday we went to Chicago again to consult with Micah's specialist. In that appointment we decided not to try any more drugs at this time. We have tried 5 different anti-seizure meds and one benzodiazapine in the past year and half. So our doctor recommended we try a different approach. We agreed that we need to take the next step in trying for relief for Micah. So we have decided to try a 14-day round of high-dose steroid injections. There is some speculation that seizures are related to inflammation of some sort in the brain. Steroids are used in the treatment of all kinds of inflammation, from asthma to sore knees and have been used successfully to treat seizures that respond to no other intervention. The doctor put the odds at 50/50 and was apologetic about that. I said, "That's amazing!" We have not had odds that good for anything since the first medicine we tried. Even the keto diet had lower statistical rates of success. Light!

This course of action is not without significant risk. It is used only in severe and intractable (uncontrolled) situations. One in 100 patients who do this treatment die from complications. The most common complication is infection, since this high dose of steroids wreaks havoc on the immune system. Micah is fortunate not to have any diagnosis other than epilepsy (such as an immune system or GI problem). This statistic of 1 in 100 takes into account all people who do this treatment, including those with other underlying problems. Still, it is terrifying to consider subjecting one's child to such a risk! We did not make this decision lightly. It is also outrageously expensive. Just the steroid itself will be about $50,000 for the 14-day supply. Yes, you read that right. And, no, we won't have to pay any of that, thanks to our health insurance. We do not that that for granted.

We will be Children's Memorial Hospital in Chicago for his monitoring for several days at the beginning of the treatment. While there we need to learn to give him the injections in order for them to allow us to go home to finish out the fourteen days. (Thanks to a nurse-friend from church who has offered to come to our house and "be the bad guy", we may learn the skill but not actually have to do it!) During that time, as well as for two weeks afterward, he/we will be quarantined. We will not take him to public places. I will be taking those four weeks off of work, and David will also be taking some time, since Micah won't be able to go to daycare. We must take every precaution to avoid his getting sick.

But if it works, it could mean his being completely seizure free, or at least with significantly reduced seizures! This is the next step in this journey. We pray for his safety and healing in this risky process! We are both fearful and hopeful.

We were scheduled to begin this round of injections on Monday, October 10, but Micah suddenly got sick on Tuesday of this week. Really sick. We found out on Wednesday that he has pneumonia in his right lung. Darkness.

But after a valiant effort on his part yesterday NOT to take his antibiotic, we were able to get most of the dose down his throat. We have to give it to him in crushed-pill form, since he can't have the kid-friendly sweet kind--and let me tell you, it tastes extremely bitter and is nearly impossible to hide in anything we are able to give him. Today and then for three more days he needs only one-half of a pill. This morning's dose went down fine with his other cocktail of applesauce, oil, two supplements and three anti-seizure meds. Thank goodness for fast-acting azithromycin. We just hope it does the trick. Last time on amoxicillin he had to take two pills, twice a day for 10 days. And today after just last night's dose he was clearly much better! Light!

So we will delay this steroid treatment for one week and plan to begin on October 17 instead. Micah's immune system is compromised right now and it must be in tip-top shape before we begin wearing it down again with the steroids. We thank you in advance for your thoughts and prayers as we try to wait patiently this week and as we anticipate venturing into the risky, sometimes dark unknown. You continue to help us see the Light.

Melissa