Finally a med that works

[hbonsky]

Just wanted to share that Zachary started his Methotrexate injections about 5 weeks ago and it seems to be working He seems to be having a little more bm control with only a little leaking into the pull up. The med still makes him so tired and cranky but its improving. Now we just need to work on getting him to gain weight. He is so tiny, I can pass him as a toddler at Disneyland So hoping this continues... we've tried other meds that have worked for a few weeks and then stopped and really hoping this one continues to work. (also I think it may be helping his butt burn too. His rash was so blisted and red and completely disappeared with this me. Not sure if it is related, but at least he can sit and ride his bike again) :ybiggrin:

 

[my little penguin]

Have you tried calmoseptine for the butt burn?
It really really helps and is ok for peranial stuff.
We found it at Walgreen adult diaper section

 

[Devynnsmom]

Yay!! So glad he's doing well! Glad its helping his bum too, that had to be awful.

 

[kimmidwife]

Glad you found something that is finally working for him. It is tough when so many drugs fail for them especially in ones so little. Have you tried to supplement with enteral nutrition at all to help wi weight gain and growth? It has been a big help for many on this forum.

 

[Sascot]

Love hearing good news. Hope it continues to get better and better :ysmile:

 

[hbonsky]

Havent tried EN yet. We did try to get him to drink Elecare, but he refused and will only do his pediasures. I think if he doesnt gain weight this will be the next step for him.

 

[my little penguin]

What about peptamen jr.?
Or eo28 splash
Elecare is amino acid based and very hard to drink.
E028 is amino but most kids can at least sip it.
Peptamen jr is more palatable since its peptide based .

 

[Crohn's Mom]

So happy to hear that the Mtx is working for you

 

[CarolinAlaska]

Glad to hear you are getting some positive results. Looks like he's tried a lot from your sig.