Now what..?

[positivemum]

Hi All

I've not been posting for a bit but here I am back for help. My son is doing well back on polymeric shakes diet. All symptoms gone etc so great.

However, ferritin back to 9.1 so iron sucrose infusion booked in for 2 weeks time in the hols and white blood cell dropped too low and isn't improving so we have to stop his Azathioprine immediately. Spoke to IBD nurse about this and expected to have to replace it with something else but apparently not. He is on Pentasa granules but doesn't always manage to take enough.

Do I need to panic? Will he suddenly become ill? Repeating bloods on the 2 days of iron infusions to see where we are at. Worried as he is doing really well with school attendance etc

What do we think?

thanks for any input to help we lower my panic and blood pressure!

 

[Tesscorm]

I also would have thought that the aza would be replaced with something?? Did he use Pentasa before? If yes, why was aza added?

Do you have an upcoming GI apptmt? I would absolutely want to discuss his treatment plan with his GI and his thoughts on keeping him only on Pentasa. As you probably know, Pentasa is a fairly mild med and is very often not enough of a treatment, however, I have read of many members here who have said they are only on a 5-asa (or were on only a 5-asa for years) without a problem. Perhaps, given your son's current condition, the GI feels there's a good enough chance that Pentasa may be enough to maintain remission???

Definitely keep up with the shakes! My son's only treatment for almost two years was enteral nutrition (six weeks exclusive to induce remission, then only as a supplement to his regular diet to maintain remission). While the EN supplementation did not eliminate all the inflammation, three MREs during the two year period did show that all had been controlled (no worsening). Perhaps, the Pentasa and EN may be enough???

But, I would also very much want to know how the GI is going to 'watch' for changes! So, what tests will he be doing to monitor, how often, etc.

As great as it would be if the Pentasa is enough, as you say, he's doing so well now, you don't want to risk that either! :ghug:

 

[Catherine]

Aza is a balancing act of keeping white cells low but not too low. I have seen others here mentioning stopping aza and restarting again when white cell had risen.

When are they re doing bloods?

 

[Patricia56]

I expect they will wait for the WBC to rebound before starting something else that could suppress them. So it's just a matter of time before they add in a new med.

Don't panic yet. If he's feeling fine then just go with that for now. Don't borrow trouble as my mom used to say.

Hope all goes well. Remember to breathe - that's what I tell myself when I'm feeling scared. It really does help.

Hugs

 

[positivemum]

Thank you everyone!

Bloods will be done in 2 weeks and 2 weeks after that whilst he is in for his iron infusions. I guess we are playing the waiting game. He is really well at the moment as he is drinking EN shakes and has been on them 5 weeks today exclusively to rest his bowel. we will begin to reintroduce food at the end of next week, another daunting process. It's hard to keep believing the docs know their stuff!

Thanks again

 

[Tesscorm]

I don't recall how old your son is??? But, just as a reference, when my son did the six weeks exclusive he was ingesting 3000 cal/day (my son was 16, approx. 125-150 lbs when taking in this level of calories). While food was reintroduced, we gradually reduced the formula until he reached 1500 cal/day from the formula (for 5 days/week) - food-wise, he ate as much as he wanted (pretty much the same as he ate before becoming sick). He then stayed with this amount of EN for almost two years. As I said earlier, this was not treatment enough to take him into complete remission, however, after the initial improvement, it was enough to maintain the status quo until he started remicade (2 years later).

However, your GI proceeds re meds, I can't imagine there would be any harm in keeping a good level of EN going as a supplement??? Of course, always let your GI know... he may have a reason to disagree??

 

[my little penguin]

^^^^yeah that!!!
We have kept DS on peptamen jr for two years.
We may have changed his other meds but he has always been on a supplement.
This has kept his weight and height back to normal even when he feels bad .

 

[positivemum]

Thanks - he is 14, 15 next month. Dietician has said when on food 1-2 shakes a day will be enough - 300cals in each. I think he will need more...

 

[my little penguin]

DS is only 9 and he drinks 3 a day.
My non Ibd kid drinks 2-3 normal shakes a day for sports alone .