UpDaTe--UpDaTe--UpDaTe--UpDaTe--UpDaTe--UpDaTe--

So from her over-stimulation she slept until about 12 or 1 PM ish.

We took her down and did an x-ray of her hand to check out her growth plates.

For her low body temp...

Her team of Dr.'s talked to endocrine and thy looked at her thyroid levels over the years.  They have been going down.  We know that she has Partial TGB deficiency (Thyroid Globulin Binding).  We found out that when she was a baby.  At that time they told us that we couldn't treat it or it would cause brain damage. But now they are thinking of adding some type of thyroid replacement.  I haven't talked to endocrinology yet.  Her actual endocrinologist, Dr. Murray, is going to come by tomorrow.

They are going to draw labs to look at 2 things.  #1)  The communication between the hypothalmus and the pituitary.  #2) The TGB again

I had the team clarify for me T3 and T4 etc...(Hopefully I get this right).  The hypothalymus (in brain) is in charge.  It tells the pituitary gland (in brain) to produce TSH (Thyroid Stimulating Hormone).  When the TSH reaches the thyroid (in neck).  The thyroid produces T4, T3, T2 and T1.  T4 is the active thyroid.

It something like that...I'm sure someone reading this knows more about it than me...so let us know.

Neurology

We are going to stay on the same dose of Onfi for now.  If we want to increase or decrease we need to wait a week or two.

OK to give Onfi (seizures) and Ritalin (for sleepy days) at same time.

Onfi can cause constipation.

Fluids can help mental status (awake/asleep) even if it doesn't show up on electrolyte and sodium blood labs.

Estrogen and onfi do interract.  The onfi makes the estrogen less effective.  So they will have to up the estrogen dose.

Nutrition


We are going to increase the water she gets every day by adding more water to her daily formula and increasing her hourly rate.  (For my own memory...increase water by 9 oz per day and increase hourly rate to 87.5.  Then a day or two later increase by 9 more oz per day and increase hourly rate to 100ml/hr.  Then do a BMP a day or two after that to check electrolytes).

Pharmacy


Talked about the onfi and the interactions with other drugs.

It will make the estrogen less effective.  Hopefully increasing the dose of estrogen will help.  But it might not.

Claritin and Zyrtec are OK.

Safe cough/cold drugs
Mucinex (guafenisen)
Tylenol (acetaminophen)
Motrin/advil (Ibuprofen)
Sudafed and Sudafed D (pseudoephedrine)
Phenylephrine


May cause increased drowsiness, use with caution:  Benadryl (diphenhydramine)


Onfi can increase levels of these meds...consider using 1/2 dose
dextromethorphan (cough suppressant)...Robitussin, Triaminic, Delsym

Dr. Murphy
Talked with her Nurse Case Manager...most of my concerns have been taken care of...so I didn't have much to talk about.  Dr. Murphy is out of town until late Tues night.

***********************************
So it was a really busy day.  Ellie has been doing well today.  Awake and alert since 12 or 1.  We will be coming home tomorrow or the next day.  We'll see.

So these were the initial concerns and how I think they've been resolved
Constipation...caused by onfi and too little water...resolved by increasing lactulose and increasing water
Decreased urine...caused by too little water...resolved by increasing water
Increased seizures...caused by?  Maybe dehydration, constipation, hormones???...resolved by onfi
Sleepiness...caused by dehydration, onfi, hormones???...resolved by increasing water, getting used to the onfi (time), looking into thyroid stuff tomorrow.
Loose hands/arms/torso/smiley...not a problem...I thought it was due to baclofen, but I guess it must be due to the Onfi
Bleeding...caused by onfi interacting with estrogen...increase estrogen
Decrease temps...caused by???? Hopefully answers tomorrow from endocrinology.