Update on my little guy

[farmerswifey]

Hi everyone from sunny Qld!! Just an update on my son, he has now completed 3 weeks of EEN, everyone is commenting how much better he looks and he has gained 1/2 kilo with another weigh in tomorrow.

I just spoke to the doctor who wants him to start on 6mp, the dosage depends on the results of the blood test he has just had - it will either be 25 or 371/2 mg.

I'd love to get some feedback on your experiences with this drug, I hate the thought of my son taking this....

Also he is still terribly low in iron, he is 3 with the range from 9 upwards, his other iron levels are not good also. Dr wants my son to have regular iron infusions.

Anyway hope you are all going well and thanks again for the great support here, xo

 

[izzi'smom]

So glad to hear that he is doing well on EN; it's so nice to see them gain!!
We haven't tried 6mp; so no help here, nor have we done iron infusions, but wishing you the best with your difficult decisions.

 

[Jenn]

Glad to hear he's doing better. Alex started on 6MP. It helped him, no side effects, his inflammation went down and he gained weight. But it never was enough to get him healthy. We are back on it with Humira now. Trouble with it is that it can take 3-4 months for full effect. Alex was anemic too, but we didn't do iron infusions. I bet your son will feel great for awhile after them! We use a chewable supplement, Natural Factors Easy Iron.

 

[Farmwife]

Great to hear that your son is doing better.
No real advice to offer just...............

(((((((((((((((((Hugs from across the pond))))))))))))))))))))))))

 

[Sascot]

Glad to hear your son is doing so well on the EN! It's great when they start looking/feeling better. No experience with 6mp - that's our next stop, but not got there yet!

 

[my little penguin]

DS took 6 mp for 8 months .
No real issues just lots of blood work.
His liver numbers went up but we got those under control. His inflammation was never under control though

 

[Catherine]

We have used aza which I believe is similar to 6mp.

Sarah is in clinical remission, only 8 months after dx. She has no symptoms. It has caused mild lymphopenia but that is part of the course and just has to be monitored. Maybe part responsible to mild anemia but worse anemia at dx.

Sarah is a busy girl swimming 6 x 2hr per week, doing year 11 and studying one 12 year subject. She has come a long way from girl who my sister was considing coming home from overseas to help care for.

 

[crohnsinct]

Wow! Look at you guys and how far you have come in a few short weeks! I am so happy for you and the positive results from EN. Tell your little guy he is doing a great job and we are all so proud of him.

Sorry no experience with the drugs you list but best good luck!

 

[Tesscorm]

Great news!!! It's such a relief when you can see them improving! :banana: What a trooper, it's certainly not an easy treatment! :ghug:

Have no experience with the meds to share though...

 

[catfan2]

Glad to hear that your son is doing well! My daughter was on Modulen for 8 weeks - it turned in to 9 as she was sick after eating again - but gained 14 pounds while she was on it. I wish I had taken some 'before' and 'after' Modulen photos, there was such a difference :thumleft:

 

[Lewiss mum]

So lovely to hear a positive story , good luck with your future treatments ,xx

 

[kimmidwife]

My daughter was put on imuran when she was first diagnosed. Imuran is another form of 6MP she had a severe allergic reaction to it so it was not good for us. I was also worried about possible side effects so am glad in the end that she was only on it a very short time.

 

[farmerswifey]

Thanks lovelies! EVERYONE is commenting on how rosy he looks, he just looks "healthier", although at yesterdays' weigh in , he has lost 300 grams, the dietician said she was not concerned and we have a two week break until the next visit. He has heaps of energy and is happy!

Seriously couldn't have gotten this far without you guys x

 

[Tesscorm]

I don't think you need to worry too much about the 'steadiness' of the weight gain. My son's experience with EEN was that the weight gain wasn't a 'steady' gain. Just going by memory (which, admittedly, can be a bit foggy at times! ), in the first week or two (of the 6 week exclusive period), my son gained 6 pounds immediately after starting EEN (he had lost close to 25 prior to diagnosis), he then very slowly gained 4-5 lbs over the remaining four weeks of exclusive EN (was feeling better, had gone back to hockey and other sports). But then, when we reintroduced foods, he gained another 15-20 lbs in the next six weeks (so approx. 30 lbs in 3 months)!

Activity affected his weight gain, as he felt better, he became more active but, unlike with a regular eating routine, he wasn't able to compensate for the extra activity with 'more food' when hungrier (as he was on a constant daily calorie formula). This wasn't a problem (dietitien was happy and there were no other GI concerns) and worked itself out once he reintroduced food and could adjust his caloric intake to his needs.

 

[polly13]

Lucy has been on 6 mp since January 24th this year - I so understand where you are coming from about not wanting to do it and worrying about side effects etc. I cried as the GI told us about the possible side effects. Having said all of that so far so good, she is doing ok on it - GI doesn't think we will be able to avoid Infliximab (remicade) but for now it is doing its job in conjunction with flagyll. There are lots of blood tests assoicated with 6 mp usage, before you start, weekly, two weekly, monthy and then finally 3 monthly - we ar still at monthly because they increased her dosage but i am hoping after this month if all is well can go to 3 monthly. But all in all it has been ok - we are lucky in some ways as Lucy doesn't mind having blood drawn. Good luck with it. For us the potential gain and Lucy not being in pain all hte time outweighed the risk for now.

 

[DustyKat]

What a fab update farmerwifey! :mademyday:

I am so happy that your boy is responding and feeling fab! YAY!

My two are on the sister drug, Imuran. Neither have had issues with it and both have stayed in remission since their surgeries, 6 years and 18 months respectively.

As mentioned, ensure regular blood tests are done and if any issues do develop they can be dealt with swiftly.

We haven't needed iron infusions here but boy oh boy he will feel and look even better when that kicks in!

Dusty. xxx

 

[jmckinley]

We were very lucky that Ryan did great on 6mp for 2 years. We have moved on to Remicade now, but had very little side effects from the 6mp except hairloss. So glad that it is working for your son.