Labs and Current Plan ---

[Guest guest]

Here are the labs and my current plan. Any thoughts you have are

appreciated:

*Son (mild apraxia, low tone)*

PT low at 1.1 (range 2.0-3.5)

B12 high at 1197 (range 211-911)

Platelets high at 498 (range 140-440)

Neutrophils low at 23 (range 140-440)

Creatinine low at 0 .4 (range .5-105)

Bun Creatinine Ratio High at 30 (range 8-27)

Carbon Dioxide low at 19 (range 20-32)

Albumin high at 4.6 (range 3.4-4.2)

IGG high at 23 (range 0-9)

Technically celiac panel negative

*Daughter (hair loss and slight speech stuff not requiring services)*

IGA low at 18 (range 20-100)

Platelets high at 471 (range 140-440)

BUN/Creatinine high at 30 (range 8-27)

PT INR low at 1.1 (range 2.0-3.5)

Prothombin Time high at 12 (range 8.7-11.5)

Vitamin D, 25- Hydroxy low at 22.8 (range 32-100)

Vitamin B12 high at 1519 (range 211-911

*Mom (me) (10 plus years of bowel issues, recent adverse reaction to a

generic drug with lots of gluten, severe back/nerve problems and more)*

Platelets high at 421 (range 140-415)

PT and PTT low at 1 (range 2.0-3.5)

Unfortunately the panels done in all three of us differ because three

different doctors ordered the labs in three different ways.

What mine says is IGA negative but no # or range given

TTG IGA negative at 1 (range 0-3)

Concerns and plan:

1) Once all labs (dad's and husband's) are in my immediate family is

getting tested for the genetic marker and any other recommended testing.

I think at this point one doc ordering all labs from one specialized lab

will help with testing uniformity and give us the best picture of what

we are facing.

2) I now realize the GI doctor (specialist, celiac expert at CHOP) used

my written answers to her history question, our discussion and limited

labs to recommend scope. She did not even look at the pediatric records.

I know she is good, has an eye for what she is seeing and I respect her

expertise and understand the brave folks who do this work have to have a

cerain level of confidence but I really do not want to scope unless

necessary, especially for son because of adverse reaction to anesthesia

and recent surgery. I also do not want to offend a dr. who could really

help us. Based on your thoughts about not scoping because of no abnormal

TTG, I am inclined to, at a minimum, not scope until we get the genetic

info. and I can get in with this GI to review the other values of

scoping like, if she is looking for something else that she can only see

that way. This way, even if we do scope, more time will elapse between

son's procedures and we can have the benefit of more information.

3) We will remain GFCF and do food challenges and a diary with other

suspected allergens. I will give them flour in applesauce consistently a

few weeks prior to scoping if the scoping becomes necessary.

4) Any thoughts on my plan? Any additional tests you think might shed

light prior to scope if needed? Any thoughts on risks I may be assuming

by not scoping earlier?

5) I spoke with the new pediatrician. Neither kid is behind on shots but

we are not getting any new ones until we get through this phase of

testing so as not to muddy the waters. I realize I may never get a label

but at least if I know I am doing my best to approach whatever this is I

can sleep.

6) Lastly, I am starting the family on GFCF vitamins and fish oil. I am

going to try to get minimal iodine to avoid an allergic reaction. I do

know they say not to take fish oil before surgery because of bleeding

risks. Do you know the timeline for stopping?

As always, much thanks!

Liz ( and 's mom)