Okay so what does this mean

[LittlebitsMommy]

Okay I have a question? Waiting on GI nurse to call back but wanted to ask all you a question.

Nurse called this morning and said Labs were back that were done Monday. Said Sed rates were normal. So no inflamation.. But liver counts were high. I was told they shouldnt be above 30 and Kotas are at 44. I was told that they just wanted to watch him and redo labs in 2 weeks. Is it okay for his liver count to be up and stay up>

I asked if he should be feeling any better? Because he isnt feeling any better at all. He hurts all the time. He asked me the other night how I thought Pop (my dad) felt right before he died? I told him I wasnt sure and then he said Momma I think I feel like pop did. He said I am so tired and I just dont feel like I have anything else to give. He said I just dont know what else to do :frown:

I am research other GI to see if we can find another one. I havent been happy with this one in quite sometime

 

[imaboveitall]

Heartbreaking remark from that boy...wow.

As to the elevated liver enzymes, what drugs is he on? Some can do this and levels need close monitoring.

 

[Jenn]

Sorry to hear he's not feeling better!

Alex's liver levels have been "elevated" a couple of times, the doctor usually just monitors that they don't stay there as certain meds can be toxic. I don't know the threshold of caution vs stop the meds now

 

[dannysmom]

I was once told that certain liver enzymes can easily go many times above normal ... so if it was just slightly high, they typically wait a bit and repeat. My son's docs did the same thing for both of my sons at different times. After the 2 week wait, they were closer to normal.

I hope your son feels better soon.

 

[LittlebitsMommy]

This is the medicine he is one right now.
Prednisone down to 10 mg
Pentasa 3 pills 2 times a day each pill 250mg
Peppermint oil Softgels twice a day
6mp 50mg daily
Kids multi vitamin with iron daily
Culturelle daily
Nexium 40mg daily
Bentyl 20mg 3 times a day
Amitriptline 25mg before bed

Ben taking Phenergan maybe 1 a day so he doesnt throw up

Dont think I forgot anything Thanks

 

[my little penguin]

probably the 6 MP
Ds had liver levels of 91.
His 6mmp levels were 10,000, anything above 5,000 is toxic.


DID they check his 6-mp metabolites???

We had to lower his 6-mp dose and add allopurinol to counter act this.
His liver levels were slightly in Jan with 6-mmp below 5,000. by Feb they were way outside.

 

[LittlebitsMommy]

Yes they checked it 2 weeks ago and said it was normal. Told me today they would recheck metabolites again in 2 weeks. Should they check it before the 2 weeks?

 

[my little penguin]

normal
but ask what the levels actually were.

6TTG is one set of levels above 250 is therapeutic range

6mmp above 5000 is the toxic range.
for example in Jan Ds's 6mmp level was normal but was still 4700. his lver enzymes were elevated at that point though just slightly above 33.

how long has he been on 6-mp?

and what were his last levels (6-mmp & 6-ttg)? that will tell you if more is shunting to his liver instead of his blood.

 

[my little penguin]

http://www.mayomedicallaboratories.com/test-catalog/print/91564

Sorry got the abbr. wrong ( 6-TGN & 6-mmpn)

OOPS

 

[tots]

I am sorry he dosent feel well.
I am an adult and at times I have a hard time dealing with
this disease!

I just wish there was something to say that would make it better.
Instead I am sennding huggs to the people in your house who are
affected by this disease!
:ghug:


Lauren

 

[LittlebitsMommy]

Thanks everyone