Trip to Detroit

We left for Detroit on Monday around 10:30 AM. Marek was PERFECT the whole way up there. We were very scared to travel 8+ hours in the car with a baby who has been EXTREMELY irritable for the last four weeks, but he did great. He slept for the first four hours and then played with his toys for the next four. We got into the hotel around 7:00 pm. Marek took a bath in the very deep sunken tub. Actually we treated it more like a mini pool and filled it up high enough that he could just float in it. He was so relaxed to lay there and not feel the weight of his body. After baths we went to sleep so we would be rested for our appointments in the morning.

We woke up to a snow/ice storm happening in Detroit (this is just our luck). Our hotel was about a mile from the hospital but it took us 30 minutes to get there. When we got to the neurology office the receptionist had me spelling our last name three times and kept asking me if I was sure I had an appointment for that day. I started to get very nervous. I told her we drove all the way from St. Louis to see Dr. Chugani and that we were told by his personal nurse that the appointment was for March 3rd. The receptionist sent me to another office where I explained everything again and re-spelled our last name for the 10th time. The receptionist at this office said she couldn't find our appointment either so they were going to contact Dr. Chugani's nurse. I am not sure what happened but after a small panic attack that maybe we drove all the way to Detroit for nothing Dr. Chugani's nurse came out to tell us that everything is OK and that they will be setting up an exam room for us.

We met with a neuro fellow first who took down all of our current information and then Dr. Chugani came in. I immediately knew that I liked him. He has great bedside manner, he is very personable and he doesn't sugar coat anything. False hope is not something I am looking for. He has seen over 900 cases of IS and written many papers on treatment plans of the disease. We could tell right away that he is very knowledgeable about IS. He explained to us that he would have administered the ACTH with a different more aggressive schedule than our doctors in St. Louis. We asked him if we could start that aggressive schedule now before Marek is completely off ACTH but he told us it's too late in the wean to do that but doing a second round of ACTH is still an option but he suggested we try the Keto diet first. He also looked over a plan that we have with our doctors down south and made some other suggestions that we will consider.

The whole time that he was discussing things with my mom and I he kept an eye on Marek and would interact with him during the visit. He then told us that Marek seems to be very high cognitively. He said that clinically Marek doesn't present like a patient that has a gene mutation or multi focal seizure activity. He told us that he couldn't be 100% sure but he strongly feels that Marek might just have one single focal point that is causing his seizures since he is very interactive, he looks from person to person when they talk and he plays with his toys when they are given to him. Dr. Chugani explained to us that if Marek has a single focal point where the seizures are occurring and that focal point is on the left hemisphere of his brain he would make a great surgical candidate. Brain surgery?!?! On my baby!?!?! I am still wrapping my mind around it. Dr. Chugani ordered a 24 hour EEG, PET scan and a follow up appointment for us. We will not know anything more until those tests are ran. We walked out of the office feeling, dare I say, a little hopeful that maybe we have another option  for fighting IS.

We started the long drive home from the hospital around 11:30am. The roads were  horrible in Detroit still. Mom did a great job driving in the icy conditions. I was a nervous wreck in the back seat. Once we reached the Indiana border it turned to rain and the roads got better. The drive back was a lot harder than the one going there. Marek didn't sleep all that much at the hotel so we were extra tired coming home. But we switched drivers half way home and stopped for some caffeine. The good thing about traveling with my mom is that we always can find things to talk about! Marek was again PERFECT all the way home. He didn't nap for more than 20 minutes during the trip but he was content playing with his toys. I am sure  his arms had to be sore,  I know Mom's and mine were from holding his toys above his carseat so he could play with them. I wouldn't have had it any other way though. I love seeing him be so interactive.

We got home around 8:00 pm. We gave Marek his medicine and then everyone headed to bed.....for 30 minutes. Yes, Marek's new sleep schedule is to wake up every 30-45 minutes. Of course he doesn't wake up smiling, he wakes up screaming and expecting food. The last couple nights we have filled up bottles with 2oz of formula so that we aren't overfeeding him. I don't know if the wean is making things worse or the increase of his other medicine, Onfi?

Thank you to everyone who has continued to pray for our Mighty Man! We love you all!!!