Endocrine

This will be a pretty boring post...it is just a summary of the last few Dr. appts...mainly for my own memory.

Neurology
Keep on keepin' on

Don't raise morning seizure med dose if doing OK with just an increase at night.

Can just do seizure med every 3 months during menstrual cycle if desired, if that is truly what is causing seizures.  It is definitely possible.

Endocrinology
Saw a new Dr.  Because her old Dr. has been having health problems and is now part-time.  New Dr. was OK, not terrible, not fantastic.  I'm not sure if we'll keep the old one or the new one.

Blood tests (Free T4 and TSH looked good)

She had no ideas on Ellie holding her urine.

Her bone scan (to see if her bones have fused---meaning she is done growing) is difficult to interpret because  it is hard to get a good x-ray of her hand (her hand is supposed to lay flat for the x-ray---but that is impossible for her).  The new Dr. thought her fingers looked like a 14 year old (which would mean she has less than 3% growth left---for a girl) but her wrists were not that mature.  So she wants to do 6 more months of the estrogen and then do another bone scan (hand/wrist x-ray).

I asked if there were any other medications other than provera to slough the lining of her uterus every three months, since she had big seizures and seemed really uncomfortable while taking that medicine (it was probably upsetting her stomach).  She said, not really.  So I asked if we could go longer than 3 months like 5 or 6 months.  She said yes, but if the lining got too thick it could make her bleed so much she would need a transfusion.  I suggested we try 4 months and see how it goes.  Then try 5 months and see how it goes. Then try 6 months and see how it goes.  She agreed that it sounded like a reasonable plan.  She also said if she has any spotting, then we would need to do the provera then.

I asked when we get done with the growth, then what do we do about the estrogen she is getting now.  She said we can switch to a low dose estrogen, like a low dose birth control pill or a patch or shot or something. She would need the continued estrogen for bone strength/density.

Her blood sugar...She was diagnosed with hypoglycemia 3 years ago.  She was started on the proglycem (med to block her insulin...which therefore allows her blood sugar to be higher...because insulin brings your blood sugar down).  3 years ago she was started on a dose of 0.7 mL of the proglycem.    Over the 3 years we lowered it to 0.5 mL at some point and she still did fine.  As long as she gets her proglycem and her continuous feeds (formula through a feeding pump directly into her stomach through a g-tube) her blood sugars have been EXTREMELY stable for the last 3 years.  98% of reading have been 90-110 which is perfect.  When she had the low blood sugar episode a while ago of 24 (which they attributed to lowering the rocephin) they raised her proglycem to 0.6 mL.  Her blood sugars recently (since the low of 24) have been in the high 70's to mid 80's.  These are still OK numbers...but they are a little low...and why so much lower than they have been for 3 years.  So I asked the new endocrinologist if we could go back up to the 0.7 mL and see if it helps.  She said that would be fine.  She also wanted to do an A1C fingerpoke blood test to look at something or other.  I have not heard the results of the A1C...I was anxious to leave because we had waited hours to see her and really just didn't want to wait any longer.  I will have to call today to check up on that.  I know they say they'll call if there's a problem with the results...but that is not sufficient for me...I want to know either way...to make sure something isn't getting overlooked.

We also went over the glucagon (super low blood sugar med) emergency plan just to clarify a few grey areas.

I waited an hour to see her and then it was probably an hour appointment.  So...sorry everyone after us (that we made you late), but we had a lot of things to go over.