Strange bloods...help..panicking

[positivemum]

Hi All

I don't know if anyone can help or direct me to the information. I haven't shared this with my 15 year old yet as I don't know how to find the words that we have another complication...

Life is going well, he is on no meds but EN combined with limited food. He feels good despite his iron dropping a bit and we know infusions will be around the corner but we are used to that.

However, his latest bloods as with the last few have shown slightly lower than normal which is why he came off azathiprine in October ( after 2 years on it). No adverse reactions with Crohns symptoms as he was on total EN then. He has had an infected ingrowing toenail that got sorted but is back and his molluscum keeps flaring up. THe worrying thing is that now one of his liver bloods is slightly elevated ( I don't know which one at the moment) which we have never had and he has been off Aza for over 4 months.

THe IBD nurse spoke to his consultant and they want to do ultrasound of liver and spleen and extra liver blood tests. They think it will all be ok but are just checking. If it all comes back ok we have to see the haemotologist. I am in overdrive panic about what the problem could be. Hasn't he dealt with enough?

He is in important exam years and work is stressful for me too so the last thing we need is more complication.

Anyone able to shed any light on this please or what we could be dealing with etc? I will call the IBD nurse but I am trying the ' until there is something to worry about, don't worry approach' I lasted 3 days doing that - now I am worrying!!!

I am now trying to decide how to play it down to tell him or maybe wait until the appointment comes through.

Help gratefully received!!

 

[crohnsinct]

Wow you are good! You lasted three days. I usually only last a few hours and then cycle back and forth until the tests.

I think it all depends on which test and level etc. Our family has a history of liver disorders and my daughter is on Mtx which is known to sometimes cause bad liver issues.

Over the summer my daughter's numbers were significantly elevated (don't ask me which ones, I don't get the tests, I just do as the doc says).

Anyway, after a couple of successive blood results the GI started talking about a liver biopsy. Wouldn't you know the very next test her numbers improved and kept improving for months after. No rhyme or reason. Biopsy cancelled.

Just sharing this to maybe sorta help you calm down a bit. No sense in wasting all your good worry energy on something you may not have to worry about.

 

[positivemum]

Thank you so much - sensible advice!

My worry is because white blood cell count not right that after dangerous google research that his bone marrow may be involved. It is treatable though by the looks of it so we will pray and paly the wait and see game and hope it is
all normal by the time we have the scan etc

Thanks again

 

[crohnsinct]

For sure a google search is dangerous! Ya know you shouldn't do it but you just can't resist. Then once we see the worst case we forget about all the simple things. Keep us posted.

 

[Tesscorm]

Quite a while back, my son's liver numbers, ALT and AST, also rose unexpectedly (he was on no meds, supplemental EN only). While they were always slightly above normal, they almost doubled... ALT 100 (norm. 0-50), AST 72 (norm 0-36). When I was googling away :lol:, I did find a vague reference that EN can sometimes cause slightly elevated liver test results, I was also told new/excessive exercise programs can have a temporary impact (he had recently started weightlifting??). In any case, our GI wanted to wait and see... Stephen's liver test results began to drop at the very next test and continued to gradually drop until they reached normal levels.

 

[Gmama]

One more thing to add, is he on an antibiotic for the infected ingrown toenail?
We have had LJ's liver enzymes rise with antibiotic use. It's not necessarily usual, but possible.
I would say that his enzymes need to be significantly raised without cause before a liver biopsy is ordered.
Hoping for a quick & simple resolution for both of you!!

 

[positivemum]

Thank yo so much both of you. You have put my mind a little at rest and I will invetigate the EN idea definitely.

Thanks you

 

[Patricia56]

The first step with most abnormal labs is to repeat the test in a few days/weeks depending on the problem. A mild elevation is normally nothing to worry about. 3 times the upper limit of normal is a general rule of thumb for liver enzyme abnormalities to become urgent. I think the GI consultant is wise to recheck his liver enzymes given his history of problems with the AZA.

I would say (not a doctor just a mom with some experience) that the referral to a hemetologist is a cautious step on the consultants part. If his labs are only slightly below normal then I would have thought it was not that big a deal. But if he is consistenly losing iron to the point of requiring infusions that may be a more significant problem and merit hemetology consult.

As to what to say to your son, I would keep it simple and not do any interpretation of the test results. leave that to the doctors. You could just say that a couple of his labs are a bit out of whack and they are going to retest them which is normally what they do in this situation.

Hope that helps. Try not to catastrophize. You really have very little info to go on and I would definitely stop googling things until you have a lot more info to go on.

All the best