Crohn's disease -my 6 year old grandson

[nani]

Hi,
I'm writing on behalf of my six year old grandson who was diagnosed with Crohn's last year. He was on I think prednisone for a few months for the inflamation. He got very bloated looking (moon face and put on weight). He did well and was taken off it after a few months. He was doing ok until recently he was having bloody stools and got an abscess. He had minor surgery (about 4 weeks ago)to drain the abcess and they put a wic in for drainage. He seemed to be doing ok but missed a couple of weeks of school. He went back to school last week but another abscess formed so he just went back in again for the same thing. I feel so bad for this poor little guy-I know it will be a long road ahead for him and I was wondering if you have any suggestions/encouragement. We are fortunate to live right outside of Boston and he's been seen by specialists in the Mass General Hospital.
Nani

 

[Manzyb]

Hi Nani! Welcome to the forum.

I am very sorry to hear about your grandson. Where is his abscess at?

I couldn't imagine going through all of that at 6. I started getting ill at 12 and diagnosed at 15 and that was hard enough. is he on any medications right now for his crohn's?

 

[nani]

Thank you for geting back to me. I just spoke with his Mom and Dad-he just came from the Doctor's office and they are putting him on a stronger medicine. He has been on Pentasa (not sure of the spelling) which they will keep him on but they are putting him on Remicade-which is an immuno-supressent and he'll have to be transfused with it every 3 weeks or so. It sounds so scary-have you heard of this?

 

[DustyKat]

Hi nani and :welcome:

I am so sorry to hear about your grandson, bless him...:hug:

Please pop by the Parent's Forum. There are quite a few parent's there that have children around your grandson's age. Remicade is widely used on the forum and like all things with this disease there are varying degrees of success but having said that many do have wonderful outcomes with it. It is a biologic, which is different to an immunosuppressant and as a general rule the infusions have a series of three loading given initially and then at 2 and 6 weeks followed by infusions every 8 weeks. It sounds like he has perianal involvement and Remicade has proven to be very successful at healing this type of disease.

Your daughter/son may be interested in reading up on Enternal Nutrition as it can be successful at inducing remission particularly in children. It generally isn't a first line treatment in the US and perhaps it is not suitable for your grandson in that respect but during flares it can also be a very useful nutritional supplement.

We also have some parent's that are using or are interested in Low Dose Naltrexone. Like all treatments, you need to do your research and ensure that is suitable for the type and level of Crohn's disease you are dealing with. We understand your fears about these drugs and hate having to make the decision to put our children on them but untreated or under treated Crohn's does have the potential to be dangerous in its own right and many of these drugs do save lives and/or give people back their lives so they can continue to function normally.

If you have any questions please don't hesitate to ask and we will do our best to help out. Good luck to your grandson and welcome aboard!

Dusty. xxx

 

[jonathanzn]

Best wishes!

 

[Angrybird]

Sorry to hear about the little guy being poorly :hug: Will keep fingers crossed he can be feeling better soon.

AB
xx