Wednesday, September 9, 2015

Results of Ellie's MRIs, Ultrasound, and Blood Work

Last Friday, Ellie had a battery of test run at the Children's Hospital - to learn more, click here.

MRI of the lumbar spine = normal (Yay, no tethered cord!)

Renal / Bladder Ultrasound = normal (Yay, no kidney problems!)

Cine MRI for sleep apnea = awaiting results

Routine blood work of CBC, metabolic panel [this also shows kidney function], Thyroid panel, and vitamin D = normal

Weight Gain since starting predication = possibly 3oz give or take a few

Explanation for why this child is only peeing once every 19-24 hours = unknown

Explanation for Ellie's crazy GI issues = unknown

Do you see that the Princess Bear lost her first tooth?!

Ellie's pediatrician has recommended that she be evaluated by a urologist. I have been in touch with the only pediatric urology clinic in Austin and the first available appointment is in November. I think the scheduler was a bit flabbergasted when I explained what the appointment was for because she then had a nurse talk to me. I am pretty sure it was when I said "Ellie has decreased voiding frequency to one every 19-24 hours at a rate of 0.7 cc/kg/hour" that did it. . . The nurse then said "she really seems to have a lot of things going on so I will talk to the urologist and see if we can fit her in earlier".  I am waiting for a call back. What do you want to bet that some of this is related to her constipation and Periactin? Or maybe she is just being a urine withholding toot?

I also put a call into the sleep clinic and am waiting to hear back as we are trying to move up her follow up appointment (it is in December). The MRI results will be discussed at this appointment.

Debating on taking a vote on what Ellie's GI specialist will do given her lack of weight gain and GI issues. All in all, I am relieved that there is nothing wrong with my precious baby girl, but frustrated because we still don't have answers. Lack of answers means we don't know how to help my Bear.

So now. . . . we wait. . . 

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  1. Hoping you get the answers you need! We love you guys ❤

  2. Hoping you get the answers you need! We love you guys ❤

  3. And the waiting is so hard. I hope one of these tests can help so you can develop an action plan for what's next. At least you can rule out some problems.

  4. My daughter didn't present with the usual loose bowels of a typical celiac disease sufferer and, like Ellie, was constipated. I had to insist on an upper GI exam, this was back in the days before a blood test. I presume blood tests have ruled out celiac, is there any chance there could be a false negative? Wishing you well, you must be extremely frustrated and I really sympathise.


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