so i had said in a previous post that i would fill you in on the bad experience i had with milo's first pcp when i had more time.....well, i have a little time right now so here it goes.
our first visit with milo's first pcp, we will call him dr. w, was in my opinion odd...he had a med student following him, which of course i don't mind...but it was dr. w's first time meeting us, and he never introduced himself, never said hi, how are you, he never really acknowledged milo in any way except to examine him...he just came in with his med student, began poking and prodding milo...spoke almost entirely to his med student, barely talking to us at all except to ask the occasional question about milo...told his med student to note the shape of milo's head....and that it was more narrow than a full term baby's head and will always remain so...the whole time telling the med student things such as this but never speaking directly to jesse or i....it was weird. he was basically in and out like a whirlwind...he interrupted me everytime i tried to speak or ask a question...it was just WEIRD.
every time we went in i would bring up concerns about milo's stiffness...his constant discomfort...his constant crying and fussiness...dr. w would always attribute all of his problems to gastrointestinal issues, and lack of weight gain. we had one, then two, then three swallow studies to try and figure out why he was not eating....all came back normal. we saw a gi doctor who tried various reflux and stomach meds...it made no difference. every time we would go in for a weight check it was always the same thing..."i don't like this...he isn't gaining enough weight" but we were trying so hard, and he just wouldn't eat. so then he told us that there were only a couple of reasons that a child won't gain weight....either they just aren't getting fed enough or there is an underlying medical problem such as a heart defect which is causing them to need more calories...then he went on to say that he knew milo didn't have anything like a heart defect....aka, insinuating that he was not being fed enough by us....which just made me so angry because for the six months that milo was home from the nicu and did not have the feeding tube, my life WAS feeding milo....we would feed him all day long just trying to get him to eat enough...and we lived in a constant sate of worry and anxiety because he would not...so anyway, my point is that instead of trying to help us figure out the root of the problem and find some solutions, dr. w made us feel as though we were to blame.
fast forward to milo's first seizure and the discovery of pvl....you would think that this would change dr. w's approach to milo's problems...but it did not. he reluctantly told us that he would order an mri and give us a referral to a neurologist but said our medicaid would most likely not pay for it and we would probably have to pay out of pocket...we said that if that's what it took then we would figure something out but to give us the referrals (by the way medicaid did pay for it without issue). that was our first taste of his reluctance to give referrals....i asked for various referrals to start pt and ot....he wouldn't do it, he said milo needed some sort of a diagnosis first (apparently the fact that he had pvl wasn't good enough). so i asked for a referral to see a developmental pediatrician...he gave me one but when i called her office they weren't accepting any new patients with medicaid, so, they told me the name of a developmental pediatrician who was....and by some sort of fluke the message i left with the front desk of her office some how made it into her direct voicemail box and the developmental pediatrician called me back herself...after explaining all of the issues that we had been having with milo, and dr. w's complete resistance to giving me any of the referrals that i needed, she made me a very quick appointment for two weeks from then, and said that she would call his office to get the referral...(so finally some things were falling into place).
a couple of days after that we had to go to dr. w's for a weight check and what would end up being the last straw, as well as our last visit to his office...i brought up again my concerns about milo's muscle tone...his tightness and spasticity....and said that i think he needs pt and ot from somewhere, he again told me he could not refer me anywhere for pt or ot because milo had no diagnoses, so then i asked how we would go about getting a diagnoses...and who would diagnose cerebral palsy...he then looked at me and said "milo doesn't have cerebral palsy"...and i said that from what i have learned about pvl...and the fact that milo's muscle tone is so spacstic, as well as the fact that he has seizures, i thought that cp was a definite possibility...then he went on to say that he was certain that milo didn't have cp because cp would have been diagnosed by the time milo was six months old (wrong....cp is hardly ever diagnosed that early...plus, who would have diagnosed it since i couldn't get any referrals from the guy), he also said that if milo had cp then baclofen wouldn't be working for him because baclofen isn't used to treat cp (wrong...almost every kid i know of with cp is on baclofen)...and i must have had a very sad look on my face, because he then said to me "well don't be so disappointed, it's a good thing that milo doesn't have cp" (as if i wanted him to have cp or something)...and if i looked sad it was not because i was upset that he was saying milo didn't have cp...but because deep down i already knew he did, and i found it really hurtful that this man who obviously did not have any accurate knowledge on the subject was just constantly dismissing my concerns...and i knew he would never give us the supports we needed to move forward....and it was also very hurtful to try to imply that i wanted something to be wrong with my son....i love milo and i will always do anything in my power to make his life the best life it can be, but i didn't want any of this for him...i didn't want him to have to constantly struggle, what parent would?
so anyway, i found a new and wonderful doctor who got us right in the following week, and during milo's developmental pediatrician appointment the following week milo was diagnosed with cerebral palsy...just as we had suspected. and now we are moving forward, starting his therapies....he's gaining weight from the feeding tube, and there is just a world of difference between the support we feel now as opposed to two months ago. so there it is, that's my bad doctor story.
