Things are going okay

[Sascot]

Hi, it's been a while since I updated as not much has been happening plus school holidays have kept us busy! We are just back from a weekend in Disneyland Paris - a fun weekend but far too busy in the park which meant we couldn't always get on the rides we wanted. Kids were a bit disappointed at times.
Andrew is doing okay. We got the results of his second 6-TG test and the levels are still too high so we are going down to 50mg 6mp. Will have another check in a month. It concerns me that he has had too high levels of 6mp in his body for nearly 5 months now - surely that would increase the risk of any side effects?
He is still managing with his fistula - it hasn't changed but we have the surgeon on 3rd September to ask about surgery to close it. He wanted us to try meds first but the 6mp has done nothing to help it.
Tiredness is still really an issue - he did football at school PE yesterday and that was him absolutely shattered for the rest of the day.
One day back at school and already he says it's boring :lol:

 

[upsetmom]

Thanks for the update.

Glad to hear that things are going ok.

Its good that your GI is keeping a close eye on things. I hope lowering the dose does the trick and helps his tiredness as well.:hug:

Good luck!

 

[Tesscorm]

Glad all is going relatively well! Funny about being bored already... if I'd had the summer off, I wouldn't be too happy to be stuck in class all day either!

I hope the drop in 6mp will do the trick and that the surgeon can move ahead to close that fistula! :ghug:

 

[Crohn's Mom]

Disneyland in Paris - how cool!
Sounds like it's the same as ours tho with waiting for hours in line for the rides.

Glad things are going ok for the moment, and hopefully he gets an answer soon with how to close up the fistula.

JJ said he was bored after the first day back too - he said the only reason he was looking forward to going back was to see his friends! Lol

 

[Mehita]

How has his WBC been? I think a high 6-TG is only concerning if its in combination with other things like the WBC being too low.

Glad he was able to enjoy a vacation though. It's always tricky planning vacations around IBD!

 

[Farmwife]

Thanks for the update.

HUGS

 

[Jmrogers4]

Glad he is doing okay and hope lowering the dose does the trick. Sounds like Disney every where. Long lines and lots of people. Still love it though.

 

[Sascot]

Mehita - not sure about WBC, they just say bloods are fine. The only one they have ever made me ask about was the ALT

 

[DustyKat]

Thanks for the update Sascot. Disney and Paris! Ooh la la, how fab! :dusty:

I hope the dose reduction pulls things back into line and school doesn't remain too boring! ugh!

Has Andrew had bloods done for B12 and other potential deficiencies?

Dusty. xxx

 

[positivemum]

Hi Sascot

I am in the UK too and we recently had to lower AZA from 100 to 50 mg as WBC too low. It is starting to improve now. As for the tiredness - what are his ferritin levels, Vit D or B12 like? My son's fatigue was a huge iron deficiency and very low Vit D. Makes a huge difference when they do iron infusions for him. We are supplementing at home now both of these.

We went to Florida Disney in May and guest services gave us a pass to help reduce queue time because of his condition so we were able to use fast pass entrance at any time. Really helped. Wish I had known you were going to Paris as could have suggested you ask about it!

 

[Sascot]

Dusty - Our GI never seems to check for any vitamin/mineral deficiencies. I asked for vit D and they were low so he takes a kids supplement from one of the local supermarkets. No idea on his B12 and his iron/ferritin has been really low, but seemed okay at last blood draw. Positivemum - they seem very reluctant to do iron infusions - I did ask about it, but he said it hadn't reached the point of really needing it. Good idea about the pass at Disney, will look into it - we think we may go to Florida in a couple years.

 

[positivemum]

If ferritin is below 15 infusions are needed! Push for them as it made such a difference. Canula can go in arm not hand as it only lasts an hour - hot tip to prevent thr canula nightmare

 

[Gmama]

Hi Sascot, sending a big hug your way! We are new to the forum and can totally sympathize with your situation. I am praying every minute of the day that my sons fistula heals up...these poor guys. The watching and waiting of this disease as a mom is just killing me.

 

[DustyKat]

Hey Sascot,

Can you get the GP to run the bloods? That is what I do.

Dusty. xxx

 

[Sascot]

We are due bloods in a couple of weeks specifically to check his 6-TG again, so I asked for ferritin to be added and will ask about the B12. He seems a little better this week thankfully.