I am writing this to tell you, as a mother, you just know your children and you just know when something is not quite right or even misdiagnosed. Even after several visits to different doctors and specialists and an actual diagnosis, I still knew something was not quite right but how do you explain to a doctor that you are still "not on board" with their answers? My answer is this: you find a doctor that listens and respects the keen, strong, 6th sense type of instincts of a mother's bond. You don't settle for answers with which you still question in your gut. I don't know how many times I said, "I am not a doctor, but I have done my homework and research and I just know there is still something that doesn't add up."

When my little guy was three years old, he started having "episodes" or what are most commonly referred to as seizures. He would often blank out for a few minutes into a delirious sort of stupor where he could not talk or use his limbs. He would whimper and cry and try to respond and usually within 3-5 minutes, he would say, "I'm okay now." This would usually happen, of course, while he was at pre-school and I was at work. It would shake up everyone at the school and I would get the frantic call and drive like a bat out of crazy places to get to my baby and comfort him. That's all I could do.

After several hospital stays, anti-seizure medications and doctors, we were told that our son was epileptic and would be on anti-seizure meds as long as he needed them. There was "a chance" he would grow out of this condition, and our main goal was to keep him from having any more seizures. We went through drug after drug and some seemed to lessen the frequency of the episodes as his learning and personality went through drastic changes and challenges with each drug we tried for the seizures. All throughout this time, I researched epilepsy and seizures; we saw a pediatric neurologist and additional specialists for EEGs, CT Scans, MRIs and blood tests. His seizures would come and go and I started to document everything I could regarding my son's eating, sleeping and mental/physical daily activities - to try to figure out the trigger for the seizures and the answers as to why this had suddenly started happening at three years of age. Why? I need to know the why and how of the seizures.

After several weeks of my journaling my son's every move, and during an office visit with my son, I reported my documentations to my son's doctor and asked lots of questions which seemed to take too long for the doctor's time as I caught a glance at the wristwatch … and, I told the doctor that my one common denominator in my findings was in my son's breathing. I told the doctor that whenever he seemed to be out of breath, extremely hot, fatigued from playing too hard or even stuffed up from allergies or a cold that he would have a seizure … and, then it happened: the doctor interrupted my report, touched my hand and said, "Mom, you just need to admit your son is having seizures. He is an epileptic and you just have to admit that and then we can go from here." The doctor went on to say, "Can we agree he is actually having seizures?"

What!? Wrong answer. This was it for me. I knew I needed to take my son's matters in my own hands and go back to our family doctor who listened to me - always - and to ask for his help for a referral to a specialist who may see more instances of conditions like this - at a children's hospital setting in a larger city. He was on board immediately, and within a day, we had an appointment in Chicago but it was six months out. We were on a waiting list for sooner. I would call every month to see if we had moved up on the list. Nothing yet.

It was August, and my son was fighting horrible allergies and learning to swim under water, and the episodes began to increase in frequency and in severity. A few of the episodes lasted longer than normal and seemed to knock the wind right out of him for several hours, he was not healthy. I had to get serious.

I called the Chicago doc's nurse and asked where we were on the list. I told her the situation and asked if there was anything anyone could do to get us in sooner. She said there wasn't. I said, "So, if I show up in the ER there, would my son get immediate attention?" She confirmed. "I said, we'll be right there …" and she told me to hang tight and she would call me right back. Well, we didn't have to go to the ER that day, but we had an appointment later that week and got down to business.

The whirlwind really began here - there were tests, tests and more tests. Lots of trips back and forth from Chicago and then a glimmer of hope … the doctor called to discuss the latest findings - which were not much different than the tests done locally. And, he said we would just need to continue to monitor my son, try a few more drugs and test again in a few months. And, I said, "Are you kidding me? We've done that. Can we do something different? Is there another test? We need answers - why is this happening? I will not settle for this sort of answer again … I still feel there is something much more serious going on. Anything else?"

And he said, "Well, we could try another test - it is very expensive but very conclusive. Our radiologist saw a little something on the MRI that could warrant this test, but maybe we should do this test … it is an MRA." Fine. Done. Do it. I pushed him and challenged him.

The MRA test came back conclusive. My son's seizures/epilepsy/episodes … were not any of the sort. They were, in fact, strokes. Strokes! A variety of small strokes, called TIAs, and larger variations of strokes. Every one of those episodes over the past 2 ½ years was a stroke. We had been walking on egg shells and didn't even know it - putting out son's life in danger each and every time he ran down the soccer field, rode his bike, swam in the pool, got too hot, got out of breath … all of that. He was a massive stroke waiting to happen and the doctors were shocked at the ticking time bomb we had in our child's brain.

A week later, we got on a plane to Boston to see the best neurosurgeon in the world, for a blood vessel transplant surgery on his brain for the progressive MoyaMoya disease, at The Children's Hospital Boston at Harvard. We made it in time.

I truly believe that if I had not pushed, researched, prodded and pulled, I may not have my soon-to-be-6-year old son with me. I would have failed him and I would have lost him. I knew in my gut that something was not right - beyond mild seizures - and I knew it had to do with his breathing. I am him - he is me. I watch him, I know most of his every moves, I know when he is feeling well, I know when he is not and just tricking me. I know when he wakes up without even hearing him, I just know. And, I knew I was not settling for answers that didn't agree with my core.

As a mother, we are the eyes and ears for the doctors and we have to find the right doctor for our situation who will listen and respect the instincts of the motherly bond and be open to our basic and limited medical knowledge and observations of our child. We just know and we have to act on that instinct until we get the answers we are finally comfortable with. We can't settle. Ever.

My little guy is doing very well and the results of the surgery last fall are very good. He has not had an "episode" for over eight weeks, which is the longest period of time between episodes in several years. We are heading back to Boston next week for another surgery - same thing - on the opposite side of his brain to eliminate any progression on that side of the brain. It is not a matter of "if" but "when" a massive stroke will occur if left untreated. So, here we go again and hopefully this will do the trick so my favorite little guy can run down the soccer field, ride his bike, swim, and sweat and play hard as boys are supposed to.

I know he will do all that and more. I just know.

In January, Saint Joseph Regional Medical Center announced a long-term partnership with Riley Hospital for Children that will enhance pediatric specialty care and complement the children's primary care services currently available in Michiana. Riley Hospital for Children at SJRMC will offer expanded services in several outpatient pediatric specialty areas.

Riley will coordinate with SJRMC and with physicians affiliated with both institutions to provide outpatient pediatric management, consultation, education and telemedicine services. SJRMC will improve access to outpatient pediatric care through the telemedicine program, which allows Riley specialists to safely and effectively diagnose and treat patients remotely, saving patients and their families the delay, inconvenience, and expense of travel resulting in efficient access to Riley pediatric specialists.

"There are many excellent pediatricians and family physicians providing primary care for children here, but geographical isolation from Riley has limited access to providers in most pediatric specialties," said Nancy R. Hellyer, President and CEO of SJRMC. "With this new long-term relationship with the nation's highest acuity children's hospital and its affiliation with the Indiana University School of Medicine, we will greatly improve access to those specialists through our Pediatric Specialty Clinics and the telemedicine program. We also look forward to the opportunities that construction of the new hospital in Edison Lakes offers for the inpatient care of our most valuable resource, our children.

The telemedicine technology also makes it possible for SJRMC and Riley to offer a greater variety of educational opportunities to local providers, hospital staff, and the community.

"We are excited about partnering with Saint Joseph's to offer Riley outpatient pediatric specialty care in the Michiana communities," said Dan Fink, Riley Chief Operating Officer. "Working together with multi-disciplinary teams allows us to treat a wider range of childhood diagnoses and build on improving the health of children and families in Michiana."

Riley already contributes to SJRMC's Pediatric Specialty Clinics, including cardiology, endocrinology and diabetology, gastroenterology, and rheumatology. Other elements of the partnership include new services to SJRMC's Pediatric Specialty Clinics, such as neurology, with selected services potentially being offered through telemedicine technology.

Release supplied by St. Joseph Regional Medical Center, Mike Stack, Public Relations Coordinator.