Waiting...Again.

If God appeared to me right now, I think I would say, "Wow, God, I don't understand why you're letting this happen and how any this can be Your will."

Since my last post almost a week ago, we increased Eddy's Keppra and waited to see what would happen. Well, Eddy had another seizure Monday afternoon during his nap, and it was the same as the previous two seizures - a spasm that turned into a tonic seizure (he goes rigid), then it turns into a tonic/clonic seizure (starts shaking after he goes rigid). I called Dr. Weinstock, his neurologist, and he said that we needed to start him on a treatment, and he recommended prednisolone. This is a steroid, similar to ACTH but not as harsh. It is administered orally, as opposed to having to give Eddy a shot every day. It also suppresses the immune system, but not quite as bad as ACTH does. It still has quite a few bad side effects, but we were happy to have finally made a decision. He called in the prednisolone, we picked it up, and we were ready to start it on Wednesday.

Then Wednesday morning at 2 am, Eddy woke up with a horrible runny nose and cough. If you have read my previous blog posts, you may be thinking "Hmm, am I sensing some déjà vu? This is sounding familiar." Yes; the last time we were going to start a treatment (ACTH), Ed got sick right before we were going to start it. The funny thing is, Ed (my husband) never gets sick, and Eddy hasn't been sick in months (Other than having seizures).

So I called Dr. Weinstock's office again yesterday morning, and he agreed that we need to wait until Eddy is better to start the prednisolone. His immune system, since it will be suppressed, has to be in top condition whenever we start the steroid.

Is God trying to tell us something?? Isn't this a little coincidental?? Both times we were going to start a treatment, someone gets sick right before and we have to wait.

So Eddy was still sick this morning, and his cough had gotten worse. Also, he developed a rash on his face. I took him to his pediatrician this afternoon, and it turns out Eddy has a double ear infection and eczema! And on top of that, his bottom molars are coming in! I just don't understand how God can let all of this happen to our poor little boy. It seems like everything is hitting him at the same time, and our typically sweet, happy baby is absolutely miserable. Which means, as all you parents out there know, that his mommy and daddy are not exactly the happiest of campers either.

Now that we are forced to wait again, I decided to try to make this a productive waiting game and look for a second opinion to see if we can find someone who has seen a case like this before. Initially, we just wanted to get Eddy started on a treatment to make him better and didn't want to take the time to get into another doctor. But now we decided a second opinion might be a good idea.

Don't get me wrong, I respect Dr. Weinstock tremendously. He is a great neurologist, and he definitely has Eddy's best interest in mind. But Buffalo Children's, comparatively, is a small hospital and doesn't even rank in the top fifty of the US News and World Reports Pediatric Neurology programs. So I contacted the #1 rated program (Boston Children's Hospital) and the #3 program (Cleveland Clinic). We are going to send Eddy's records to both facilities, and ideally we would like a second opinion over the phone (especially from Boston). We would be willing to travel to Cleveland (actually we would be willing to travel anywhere, if it could help Eddy) because Cleveland is only 3 and a half hours away. I spent some time today researching the Pediatric Epilepsy Center at Cleveland Clinic and I am very impressed. Their technology and experience is top-of-the-line, and I am encouraged by the thought of someone there potentially having seen a case like Eddy's before and knowing what to do for him.

So that's where we're at. I think that, now, the waiting is the hardest part. Even harder than watching Eddy have seizures. I know that he is going to have seizures until we figure out the best course of treatment for him, and I just want to have that information now.

I don't want to sound ungrateful, or negative, because I know how lucky I am to even have this little boy in my life. And I'm so fortunate to have my husband, and my family, and friends, and everything that God has given us. So many people care about Eddy, and us, and it's so comforting to know that. Please continue to pray for us, especially that God will lead us in the right direction for a doctor and a treatment that will help cure Eddy. Thanks so much <3.