An answer for Madison

When Madison was born she was a healthy baby girl.  She was hitting all her milestones.  Eventually at 18 months she wasn't walking.  Her pediatrician wasn't concerned, but we were.  We took her in to be evaluated and they felt she was fine.  She was barely walking at age 2 so we contacted her doctor again who had her evaluated by OT and PT.  They felt she was on the low end of normal but ok.  Well, at the age of a little over 4 with preschool up ahead we felt there needed to be an intervention.  Madison cannot do the things children her own age can do.  This has been getting increasingly evident as her sister is getting older and can do things Madison cannot do.  Madison was unable to go up and down stairs by herself, cannot get on the toilet by herself, cannot hold a crayon properly, cannot jump, cannot use playground equipment, etc.  By this time Madison had also developed some vomiting which the pediatrician kept telling me was the bug but because we weren't  hearing it referred us to a GI doctor at our persistence.  We did a gastric emptying study and found some delayed gastric emptying and ultimately got the diagnosis of cyclical vomiting syndrome.  
       The school district then had her evaluated and this time we qualified for OT 2x week and PT 2x week.  The physical therapist had also recommended a neurology evaluation.  What?!?! The neurologist we saw recommended an MRI because of the cyclical vomiting and the fact that we do not have a family history of migraines.  Low and behold we have an abnormal MRI that shows very decreased myelin in Madison's brain.  This is usually associated with multiple sclerosis but the neurologist doesnt seem to think that this is what this is-however the neurologist does not know anything about this and therefore we did lots of bloodwork and urine testing to make sure there wasn't any metabolic syndromes going on.  There isn't.  We saw the neurologist on Monday and she now wants us to go to Johns Hopkins and have an MRI with Madison under anesthesia with contrast and have a neurology consult there.  We are unsure when this appointment will be-the neurologist is working on that.  She says it may be a thing where they have an opening and we just have to go.   There is travel, hotel, food, medical, etc.  The stay could turn into a few days depending on how the appointments can be set up.  Also the repeat visits and testing that follow.   We just didn't want to not be able to go when they could see us because we didn't have the funds.  Thanks so much!!!
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Kristen Daggett Showens 
Liverpool, NY
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