Closure

Miss Madeline had an apt. today that I had been extremely anxious to attend...in fact I had asked her pediatrician if I could cancel it as I really did not think she needed it. He disagreed and wanted me to bring Maddie. This apt was with Dr. Bingum, who is a pediatric neurologist here in Burlington VT. There are only 2 practicing pediatric neuros in VT and they both are colleagues who work out of the same children's hospital portion at Fletcher Allen. The other neuro is Dr. K, the neuro Maddie saw in the beginning of all this who we had struggled with early on.

I was dreading this apt but also respect what her pediatrician had to say about the possibility of needing a neuro close by and to eventually not have to trek back and forth to Boston. My stomach was in knots when I was there and I don't even know what I was afraid of. I think all those unresolved emotions about our experience with Dr. K was getting the best of me. I also remember that time in our life as an extremely emotional time...we had no answers and knew something was wrong. I think that perhaps Dr. K may be a bit of a trigger in bringing back those feelings.

Anyway, the apt went SO WONDERFUL!!!! Dr. Bingum could sense my anxiety and asked just the right questions for me to be able to express what had happened with Dr. K without sounding unprofessional and nosey. He may have been manipulating me a bit to get me to talk, but it worked and he sounded extremely supportive. I finally started to breath when he said exactly what I wanted to hear..."invalidated"..."this is how your family must have felt after discussing the diagnosis with Dr. K. and I can see how that would really be disturbing to you all."
He nailed it...

After almost 6 months of pleading the neuro to take us seriously, and video taping every weird movement she made...I had known all along that something just wasn't right...and here it was clear as day on a picture of her brain...A small white circle and 2 white stripes...just in the right places to cause a whole lot of problems.


IF I could have only heard the words from her, "your Mommy instincts were right, something is wrong." We would all be in a much different place now. Instead she was clearly upset at Maddie's pediatrician for ordering the MRI when she said not to...and wanted to convince me that she was right by making it sound like this thing in her brain was like a damn splinter or something. She tried to make me feel guilty about agreeing for more testing. I knew she was wrong and could not trust her at that point. That appt. is what lead me to fear the worst...and it shouldn't have.

I do hope to someday put together a support group for parents who go through this. I have connected to so many parents who are still emailing me about issues they have with doctors for this same reason. It isn't fair for families to go through that...We have enough on our plates with dealing with the issues our children have.


OK- so I feel so good that it has all come out. I may not have told her directly, but I know the intent was for Dr. Bingum to find out for her...which is fine by me...She will know now and I hope it effects the way she works with other patients. I have the closure I needed.


As far as the appt...Maddie did pretty well...She had a bad headache this morning and her eyes are really bad today. They turned off the lights in the room and she was better.

He talked to me about how things were going and had some great incite on Maddie's situation. He actually agreed that Maddie will probably have a lot of weird neurological behaviors due to her cortical dysplasia and sensory issues and that people may suspect that she is having seizures when she isn't. He said he generally sees kids who have Cortical Dysplasia come in at the age of 4 or 5 with the seizures. He said by then we would certainly know if she was actually having seizures...It is harder to tell in babies because babies do weird things :) and Maddie does really weird things.
I asked if it was possible that she may never have seizures and he said it was possible.

I told him about the research I found on changes on the TSC1 gene being associated with a type of Cortical Dysplasia, and he actually knew about this! I was really impressed with this guy. He agreed that it is probable that Maddie ONLY has Cortical dysplasia and that may be the reason for the gene change. Oh I was psyched because this is what I was trying to convince myself after MY OWN research. Of course he understood that if Rob's test comes back negative for the same gene change that Maddie is likely to have a Mild case of TS and she would get tests on her kidney's and such if so....I am feeling in my heart that it is likely Cortical Dysplasia....I just am feeling that but we will see.

Either way, I left the appt feeling the way every parent should feel leaving a doctor's apt....Satisfied, supported, and comfortable with the information given to me.


Tomorrow is Maddie's team meeting to discuss how she is doing and her newest transition (in the next few months) to the toddler room...dun dun dunnnnnn. I think I will need more of a transition :)