Double post, but really need advise, to give meds or not?

[Jane and Nick]

OK, so I am GUTTED ! Obviously I didn't respect the CD fairy, when I posted how well we were doing. Our GI was in the UK last week and she thought that it would be OK to wait two weeks for a blood test, Nick started to feel light headed and dizzy so I contacted our paediatric doctor and he took some blood. I went to the movies today with my lovely husband, we never go out! It was lunch time the kids were safe and at school, and what do you know, while my phone was on silent 3 calls from the DR and a text!
Nicks LFT was off the chart,
AST 42 range is 16-40
ALT 85 range is 8-54
GGT 470 !! Range is 11-63
Alkaline phosphatase 200 range 40-129
I am so bitterly disappointed ! The only thing that changed is that we went from 50mg to 75 we were doing SO well. Even now the only symptom is dizziness. His GI is back and we are going in tomorrow morning. Should I give him his AZA tonight ? The doctors don't seem to be confident and I haven't had any direction other than his levels are high and bring him in tomorrow,if you would like to.

Damn, damn, damn !

 

[my little penguin]

Have you asked specifically if you should give the dose ?

Here is an old report from cchmc in numbers lft .
Maybe show it to your doc since we can't give medical advice .
http://www.cincinnatichildrens.org/WorkArea/DownloadAsset.aspx?id=87937

 

[DanceMom]

AST and ALT aren't too high. Our GI didn't pull 6-mp until levels were 3x normal limits. That being said, A's GGT was never high. Can you call and ask if meds should be given?

 

[Jane and Nick]

High Dance Mom,
We don't have on call Dr out here, we could go to the ER but they would be in the dark as most have not ever dealt with IBD clinically only read about it during training, its 10:40 pm here. I think I will give Nick the initial dose of 50 mg, or may be nothing, or may be I should give him just 25 ? GGT is so high ! He has just come to me and is light headed and dizzy perhaps GGT is wrong ? Guess we will see tomorrow. I hate this SO MUCH, you guys are my peace of mind and my sanity. Thank you.

 

[Jane and Nick]

I did ask if I should lower the dose, but I didn't hear back.
I have just given him 25mg plus his Salofalk, figured that couldn't hurt too much either way. Thank you for your responses and apologies for the double post.

 

[DustyKat]

I’m sorry I missed this last night Jane, had gone to bed. :ghug:

It would be hard not to think that a raised ALP and GGT (when the liver is involved they usually raise in tandem) isn’t pointing to the Imuran. I would have held off giving it but what you have also done is fine, well done.

Now, things to consider and discuss with the docs:

1. Stop the Imuran altogether.

2. Reduce the dose back and monitor closely.

3. Add Allopurinol. This inhibits the metabolism and excretion of the thiopurines causing toxicity if the dose isn’t reduced. As such it has the added side effect that when normal doses of Imuran/6MP can’t be tolerated the addition of the Allopurinol means dose reduction to a quarter of normal.

4. Change to 6MP. Intolerance of one Thiopurine doesn’t necessarily equate to an intolerance of the other.

5. Change to a different drug altogether.

Good luck Jane and keep us posted with how you get on. :hug:

Dusty. xxx

 

[AZMOM]

I second Dusty!!!! Keep us posted.

J

 

[Jane and Nick]

Just back from the hospital. His GGT has come down to 311 from 470 range 11-63, his AST is 29 range 16-40 his ALT is 37 range 11-63 so the AST and ALT are normal.

He has tested positive for a bacterial infection from a nose/throat swab and she has put him on antibiotics and signed him off school until the end of term (10) days. She says his immunity is too compromised to risk picking up any more infections and as it is winding down for summer he may as well stay home.

She wants us to come back down to 50mg and go in for a blood test on Monday. I think I overreacted :frown: but it's so hard to get good advice over here, and his levels were high. She doesn't think it's the AZA but thinks the bacterial infection has caused the spike.

I am a bit cross that the paediatrician took 3 days to get back to me with the first set of results, we had the blood test done on the Thursday and he called me yesterday! Bloods come back in an hour at the hospital so he had them on his desk on Thursday afternoon, I'm disappointed about that. At least the GI today was a little more proactive.

Nick is limping today he says he hurt his heel running in gym, he can't put any weight on it almost like he has a heel spur, poor thing is in the wars.

Thank you so much for all your advice, and putting up with my panic, I'm normally very calm (honestly):ybatty: I suppose I we will just have to wait and see what Monday brings.

Jane and Nick

 

[Sascot]

Hope things start to get better over the weekend

 

[DustyKat]

Oh Jane…:ghug:…you were just fine, perfectly sensible in fact!

How can we not ‘freak out’ when we see abnormal results, no matter what their nature. We are dealing with an invisible disease and it is the results that are our main window into what happening in our kids bodies. Not only do we fret about the disease but we have the meds to agonise over too. So pat yourself on the back for handling it all so well! :thumleft:

Good luck with the test on Monday. I hope all settles from here on in and your lad is on top of things again for the holidays, bless him. :heart:

Onwards and Upwards young fella! ika:

Dusty. xxx