Pissed (and a bit tipsy). I was right, the doc found something.

dulcinea03 · June 2011

After 16 months of our normal ped assuring me that Jules was fine, she was just small and she'd catch up, she hasn't. It took seeing one of the peds in the practice who was one of our primary contact in the NICU, for a flipping fever 2 weeks ago to find someone who was willing to test her. Sorry, but not walking and under 16lbs at 16 months old is NOT NORMAL. Especially when mom and dad are tall.

2 weeks ago was a CBC, iron, and metabolic panel. All came back normal. But Dr G (God bless him) still thought there was something we were missing. So last week he ordered a thyroid panel and celiac test. Celiac came back negative, but the thyroid is "way off". You know things aren't good when you're getting calls from the ped at home at 7pm at night.

So he's going to talk to an endocrinologist at Children's tomorrow, and wants us in Denver to see them in at most 2 weeks, preferably sooner. And to see Jules for a weight check next week. This is a ped who doesn't have any well child visits available until October (yes, I checked last week). And he wants to see us weekly until we get some answers.

I won't lie- I'm pissed at our normal ped for brushing off our concerns for the last 6 months. I'm pissed at myself for not standing up for my child and losing precious time in getting her a correct diagnosis.

Tonight is the pity party. Tomorrow I start educating myself on thyroid conditons. I'm picking up her medical records tomorrow to have the solid #'s, and then its game on. I just hope we aren't too late and this hasn't caused serious harm to my baby.

epphd · June 2011

Left Hug Right Hug I would be pissed too. Do NOT for one second feel guilty - you are a mom; you are not the doctor. It is your job to ASK questions and the doc's to answer. You did your job, they did not.

My theory, based on a total amateur understanding of medicine, is that it is not too late. Hormone deficiencies can be made up for and since Jules is still so young, there should be ample time to correct. Again - I'm totally going on gut instinct here but I'll be hoping I'm also at least part right.

LucyPevensie · June 2011

epphd:
I would be pissed too. Do NOT for one second feel guilty - you are a mom; you are not the doctor. It is your job to ASK questions and the doc's to answer. You did your job, they did not.
My theory, based on a total amateur understanding of medicine, is that it is not too late. Hormone deficiencies can be made up for and since Jules is still so young, there should be ample time to correct. Again - I'm totally going on gut instinct here but I'll be hoping I'm also at least part right.

Everything E said. YOU are awesome - your pediatrician failed you. And I have a feeling anyone else who gets in your way from here on in will rue the day! Good luck mama, you guys will figure this out.

jds0521 · June 2011

I'm so sorry - I hope you guys get some answers soon. And thank GOD for Dr. G who decided to look further into it. Sending lots of t&p, ((hugs))

alchris · June 2011

I'm so sorry. All you can do is listen to your gut and advocate, and you've been doing that. And, FWIW, Kira was less than 17 lbs. at 16 months; it's tiny, but not unheard of, and Jules can still catch up. Please keep us posted! Hugs, Mommy!

naflmj · June 2011

epphd:
I would be pissed too. Do NOT for one second feel guilty - you are a mom; you are not the doctor. It is your job to ASK questions and the doc's to answer. You did your job, they did not.
My theory, based on a total amateur understanding of medicine, is that it is not too late. Hormone deficiencies can be made up for and since Jules is still so young, there should be ample time to correct. Again - I'm totally going on gut instinct here but I'll be hoping I'm also at least part right.

Totally agree. Good luck with the endocrinologist. We see one for G (he was 17lbs at 16 months) and have found her to be an amazing resource. We aren't dealing w/thyroid so I can't speak to that but I think her being so young, she has time to catch up especially now that you are seeing someone who specializes in the field.

kme930 · June 2011

epphd:
I would be pissed too. Do NOT for one second feel guilty - you are a mom; you are not the doctor. It is your job to ASK questions and the doc's to answer. You did your job, they did not.

I could not have said it better! You are doing a great job advocating for your little girl! I hope this all turns out to be manageable and that the path from here on out is much smoother!

Dochas · June 2011

He'll get you in to the endocrinologist - especially since it was his practice that missed this. If it takes more than two weeks, tell them to get you in with someone else. This isn't your fault it's the doctors. But in the future if a doc isn't listening it's time to go someplace else. Did they not test the thyroid in the first round of testing? After you see the specialist I would think about finding a whole new practice.

dulcinea03 · June 2011

Dochas:
Did they not test the thyroid in the first round of testing? After you see the specialist I would think about finding a whole new practice.

Dr G wrote the thyroid on the original order (I saw the order, and know it was on there), but the lab didn't draw tubes for it, and didn't tell anyone until they sent the results without it. So we had to go in for the second draw, which I'm glad for as I was able to get Dr G to also check for celiac.

Unfortunately, until DH gets a job and we change insurance, we're stuck with this pediatrician practice. Luckily its a large practice of 30 peds and nurse practitioners and Dr G (for now at least) is making room in his schedule for us and I feel confident in the care he is giving. The girls won't be seen by the other ped again if I have any way around it.

emmyloustu · June 2011

kme930:
epphd:
I would be pissed too. Do NOT for one second feel guilty - you are a mom; you are not the doctor. It is your job to ASK questions and the doc's to answer. You did your job, they did not.
I could not have said it better! You are doing a great job advocating for your little girl! I hope this all turns out to be manageable and that the path from here on out is much smoother!

DItto x2! Keep us posted! Good luck!

oct11bride03 · June 2011

I'm sorry! ((HUGS))

Courted · June 2011

Um yeah, I would be really pissed and would probably leave after making a formal complaint to the medical board. Sometimes these docs just blow us "over protective and worried" parents off without taking the time to really acknowledge if there is a problem. At least there is doctor on your side now. (((HUGS))))

howleyshell · June 2011

Ugh... I would be BEYOND livid.

Please don't beat yourself up over this!

Focus on what you CAN do to make a positive impact and move forward.

Where do you live?

Will you need an overnight to come to Denver?

Anything I can do for you?

I'm on the south side in Highlands Ranch.

Lemme know...

howley shel at yahoo

dulcinea03 · June 2011

Howleyshel- Thanks for the offer! We're up in the greater Ft Collins area, so it will be a day trip unless they find a reason to admit her (doesn't sound that bad, yet).

I just got copies of all the labwork done on Jules since she was born. While I'm not a medical professional, I do work in a hospital and know enough to be able to decipher the codes for abnormal readings. Lets just say there are things in there that is news to me, especially from 4-6 months ago. Right now I'm torn between focusing all my anger on getting Jules better, or tearing up the ped. Deep breaths. Good air in, bad air out.

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Pissed (and a bit tipsy). I was right, the doc found something.

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