Our pediatrician is back from vacation - finally! He has been my children's doctor since our oldest was less than a year about 12 years. We bring him cookies at Christmas, the kids draw him pictures and send him cards through out the year. We all love him. Today....I could strangle him!
I just feel like he should be doing more, feeling the urgency like I do. I want him to order every test he can think of, and when he runs out of those, find others. I want him to figure this out and get us on the road to normalcy. I want him to feel this bone-deep dread like I do. Unfortunately, he isn't, he won't and he doesn't.
He agrees that there is something wrong, that her tests are coming back wonky - but not wonky enough to point us in the right direction. He refused the MRI AGAIN, saying that he would leave it to the neurologist to determine if one is necessary or not. He did however, resend the referral, send copies of her bloodwork and copies of her older brothers bleeding disorder info. He itemized by day her symptoms and complaints, with the hope the info would expedite the appointment. What he won't do is order any other tests, xray/US her stomach again or change his "wait and see" approach.
The Consulting Paediatrician from Hamilton has come through with an appointment for Leah for 2:30pm today. We will be going to see her. I requested copies of Leah's results for the last 18 months to keep on hand for emergencies. I will bring her a set to review and hopefully get a second opinion.
Keep your fingers crossed for us!
Keeping my fingers crossed, saying many prayers and keeping your family in our thoughts. Hoping you get some answers soon!
ReplyDeleteHey Kate, a few friends on Facebook suggested the following:
ReplyDeleteThis must be so devastating. My advice is to drop her family doctor and seek out the people that WILL help her little girl. She's the only one that can advocate for Leah :-( I think that GPs are way too lax. Mom's know when something is wrong. She needs to listen to that instinct and listen to the "frustration" she feels that nothing is being done...probably because her GP honestly doesn't know what to do, which is why he's minimizing it. I'm wondering if it's not a rare neuromuscular degenerative disorder. My heart really aches for them Pam
Sounds a bit like juvenile myasthenia gravis or some similar autoimmune disorder...
Lots of love to you, hun, I hope you get some answers soon. I can't imagine.