Anytime there is a fundraiser for a Children's hospital the main focus goes to children with cancer. A good majority of the stories focus around cancer. I understand these are the worst of the worst stories. Children's does so much more. They are not just a cancer hospital.
We have been a patient of Children's National Hospital for close to three years now. Our story is not one of cancer. We have multiple dx, including autism, seizures, movement disorder, asthma, and the list goes on. At no point have we received anything but the best care.
We first entered Children's through the neurology department. There was a possible seizure at school and we needed to find out what was going on. We started with a MRI and EEG. The first MRI we tried was not sedated. Because of movement they couldn't get a clear picture so we had to redo. Oh and they saw some rot of troth in his brain. We would need to use contrast to see what it was. We did the EEG and follow up MRI.
They showed nothing.
We also had a ton of blood-work done. He was tested for everything. The copper test was done so rarely the tech had to look up how to do it. He needed to know what vial to use. Also did a 24 hour urine looking for porpheria.
At that point the neurologist could have said ok it's nothing have a nice life but she didn't. She kept digging, kept searching. We have been everywhere in the hospital. Sometimes seizures can be caused by a heart issue so off to cardiology we went. Nope nothing there that would cause a seizure but hey look here a extra vein on the heart that is taking blood to the wrong side of the heart. No abnormal growth lets just watch it.
Still no answers.
Neurologist noticed some movements that were not normal and seemed uncontrolled so off to another neurologist. This one specialized in movement disorders. Yep there is a movement disorder but nothing that would mimic or caused seizures.
We were involved in a car accident and saw signs of a concussion clinic. I emailed the neurologist. She emailed back within the hour and said to make a appointment ASAP. She is normally booked for three months out, the nurse got us in the next morning. From there we went to the concussion clinic. Since we were seeing more seizure activity the neurologist also scheduled a 24 hour EEG.
Maybe we will get somewhere now.
24 hr EEG done and of course no episodes in that time period. Concussion clinic determined yes he had a concussion but there was something more. Something that a concussion would not explain. The doctor from the clinic asked if I would like a referral to the autism center for further testing.
OK a few answers but we are still clueless.
Wait listed for the autism center. It has a 18 month wait list. They will go ahead and mail out the paperwork for us so we don't have to do it in the office. We continue with our neurologist. Next on her list audiology and ophthalmologist.
Off we go again.
Audiology does a hearing test results are normal. We had gone to a eye doctor, you know one of those chain places. The said he needed glasses and of course we bought them. Now we were going to a ophthalmologist at Children's. he was looking for something else. First thing he tells us is this child does not need glasses. Thanks chain place there's a couple hundred I will never see again. As for anything else. Nothing.
Finally we get a call from the autism center. Its much earlier than expected. Only three months can we come in on Monday. Yes we can. The person on the phone let me know that they were able to get insurance to agree to pay for most of it but there was some they would not. I couldn't pay. I was thinking great we finally get here and it is going to come down to money. The response. Don't worry about the money. We will see you on Monday. We can talk about the money later. So we show up on Monday for all day testing. Some we didn't do because the school already did and I brought the results with us. They worked out a payment plan that I could do. Made the follow up appointment for a month later.
Now we wait.
We went to the follow up and I remember standing in the elevator and being asked what do you think he is going to say. I said I don't think I already know he is going to say he is autistic. That's just what he did. The neuropsychologist could have just said hey your kids autistic have a nice day. Nope he answered all questions, gave us information that included a list of service providers. His report was written so completely the school couldn't fight it. We left there with some answers and his phone number to call anytime. He had me call before our IEP meeting and coached me on what to say and how to say it. He really cared and helped us.
Yeah some answers.
We received speech from Children's for a few months and then our therapist transferred to another hospital and we went to the bottom of the list. Only complaint I ever had was being pushed to the bottom of the list through no fault of our own. It worked out though We found a great speech and OT through a outside clinic and we worked with them for a year. Before we became therapy dropouts. (you can read about it here)
Now today we are still seeing our neurologist every six months. We still don't know where the absence seizures are coming from. We have done multiple EEG's and MRI's still nothing. She says we will get them one day it's just a little tricky sometimes.The cyst is still there but hasn't changed so don't worry. We went to the cardiologist for a follow up last year. The vein is still there we had a cardiac MRI done and it's no big deal. So follow up in five years unless something happens. We just live our lives. We are involved in some studies through Children's.
So when you hear the telethon. When the clerk asks you to donate to miracle network. The runs and walks. Think about it. Because of people who generously donated we are able to get care. We can go to the specialist. We can have the tests run. We can follow the doctors recommendations without ever having to think about the bill. The one thing about Children's is they really do care, they have never turned us away because I couldn't pay. There ultimate goal is for my child to be healthy not their profit margin.