Things have been moving along as we now are only a week away from being admitted to the Children's Hospital in St. Paul, MN via the MN Epilepsy Group. Since my last update we had visited with Abram's Pediatrician who prescribed him a sleep medication to help him get some much needed rest. However, after just six days on the drug we realized that it was not a good fit for him. He was becoming very aggressive with his moods and three of the six nights Abram and I landed on the couch sleeping together as he just couldn't settle himself in at all. On the last night, he drenched two different jammie sets in sweat but was only 97.7 for his temperature so I called his Pediatrician and they had me ween him back off. The drug is also used to bring down blood pressure and heart rate and it was having quite the adverse affect on him. We are now officially off and tonight will be the third night. I'm hoping he gets some rest! We spent a lot of time outdoors today so I'm hoping all the nice fresh air will get him some sleep tonight!
Our Neurologist finally called us back today as well to tell me that the sleep medicine was not something that he would not have prescribed. Then when I asked him again about the new cyst that was reported in the Radiologist Report on his March's MRI he asked "What new cyst? I didn't even know there was one until I saw your email."(This is the kind of stuff that infuriates me.) But I digress. He is a good kind man and is doing his best. I'm just frustrated that the fact that: 1) I asked him directly about this in the hospital and he dismissed me with his hand like he was shooing a fly 2) The cyst is IN the Radiologist Report and 3) the Cyst is Flagged on the MRI. I just can't wrap my brain around a Neurologist NOT looking at an MRI that they themselves ordered but he promised to go over the images from March at our next appointment with him in June. It is what it is! I honestly feel guilty even sharing that tidbit but it's things like this that help people understand what we go through. Every single family I meet that is suffering with the unknowns of brain cysts, brain lesions and benign brain tumors as well as Epilepsy all go through the gamut of doctors where we all feel like we're chasing our own tails. This is the norm, not the exception but honestly, it feels better knowing that it's not just us!
The good news is we are off to a Nationally Recognized program that even the Director of the Epilepsy Foundation here recommended and confirmed as a good place to go. She was kind enough to chat with me over the phone again (we had spoken on the phone last fall before Abram's Epilepsy Diagnosis) and put me at ease that the people we have been discussing Abe's case with (Dr. Chugani in Michigan and Dr. Weiner at NYU) are highly regarded in the field of Epilepsy so she helped me to feel a lot less frustrated and more like we are on the right track!
One week from today, Mr. Abe and I will be in a hotel in downtown St. Paul. I'm hoping to get there the day before to get a day of fun in before we're confined to a hospital stay for 10 days or less!
Much love to all of you. Thank you again for all your help. We literally couldn't be doing it without you.