RECENT DIAGNOSIS 12 yr old son

[Lori1973]

Hi, just a quick note. We recently found out one month ago that our 12 yr old son has crohns. Went in for an absyst removal on his buttocks and also had been combatting the flu like symptoms for about three weeks prior. Of course we thought it was just the flu but then after specialist removed the absyst he mentioned "crohns" We took stool samples to the dr for three days and found out that he had a parasite called criptospore and also had c-diff. He was 82 lbs when we started this deal and quickly went to 69 lbs. We were very scared. After 10 days in two different hospitals, we were diagnosed with crohns disease. He is now on Prednisone for a second round and has just started crohn's medicine too. In hopes that by the time the Prednisone wears out the crohn's medicine (Imuran) (spelling?) will have kicked in.. They said to eat what he wants at this point and he will find out what bothers him and what don't. He is back up to 82 lbs now and looks better since starting back on prednisone (Two flare ups do to dropping on a low dose of prednisone.) but will be off that in four weeks.

Question: Are there any favorite books that I should be reading about crohn's, perhaps nutrition and cooking? Any advice would be appreciated. We pack our lunch to school a lot ...

 

[Ams-Qld]

Hi Lori!
Welcome to the forum, sorry about your son's crohn's though. I know what that is like, my youngest child is also a 12 year old boy with crohn's! He has been diagnosed for two years now but only recently dealt with perianal abscesses (they are not nice!!) There is a parent's sub-forum here that is great for support for us mums and dads! The people here are amazing and have been a real help when so many of those around us don't understand!
It seems as though your son's dx was made quite quickly, which is good. Has he had any dh? My son also lost a lot of weight of his already thin build when he first flared, it was actually scary. He has also gained all the weight back but is still thin. Your son's treatment has been the same as my son's. We had 50mg pred for a few weeks (had to go off early due to horrendous side effects) and 50mg imuran (that he is still on). We have now added long term Flagyl at 800mg per day for his abscesses.
There is also a great sub-forum here on cooking for kids etc. We follow a fairly simple form of the low residue diet but there are lots of different and helpful diet advice, but it can be confusing! I have researched a fair bit and we have decided to go with the simple changes as our son is already having to deal with alot and so we have decided not to restrict his food too much, (although this would change if it became medically necessary for his crohn's) but at the moment he is doing ok with just avoiding too much fiber; no multi-grain bread;little fruit with no seeds or skin; only well cooked vegies and no peas or corn; limiting milk products or using lactose free milk; and no popcorn! We also have found that supplementation helps our son as he is anemic and struggles with absorbtion and our Paed GI suggested some supplements too so he takes; krill oil; probiotics;Vitamin D3;multivitamins; and FYI Ultra for inflamation. I have found that they help us, whether it is placebo or not I don't know, but don't really care as it seems to work well for him!!! I am not happy about the meds my son needs, but realise that he does have to have them. I think supplements work well to complement his meds. I have read a heap of books on Crohn's just from the library. I did enjoy Jordan Ruben's books, mainly because he has Crohn's himself and I have personally found his company's supplement products very good (Garden of Life). Feel free to inbox me if you need to chat. All the best! xx

 

[Angrybird]

Hello and welcome to the forum, I am sorry to hear your son has been so unwell recently

Did your son start the Imuran straight away? This can take up to 12 weeks to kick in so it may be the pred taper goes a little more slowly again before he comes of it - was a calcium supplement prescribed for while he is on this? As already mentioned we have a parents forum here so please do check this this out: http://www.crohnsforum.com/forumdisplay.php?f=49. We also have a diet and sups forum that you might also like to look at to get further info in this area.

Please keep us updated on how he is getting on.

AB
xx

 

[David]

Hi Lori and welcome to the community

I'm so sorry to hear about your son, that's so heartbreaking My heart goes out to you, your son, and entire family.

Out of curiosity, how did you get the actual Crohn's diagnosis? Did they do a colonoscopy and the biopsy came back positive for Crohn's or some other way?

Do they have him on medication for the c.diff and parasites?

 

[Lori1973]

Hi David, Thank you for welcoming me to the community. Yes, they did an colonoscopy and upper gi and also took biopsies to determine crohn's. They had him on antibiotics for c-diff and parasite. We have just started crohns medication on Saturday and back on prednisone too. I hope we are on the right track now. I'm glad I found this forum because I can't really say I paid too much attention to crohn's until now.

 

[Lori1973]

Thank You everyone who has written so far... I have a feeling I can get ideas and support. That is what we need. Lori

 

[David]

I did a little research for you and it looks like the Cryptosporidium MAY have actually triggered the Crohn's disease flare

Did they educate you about cleaning to make sure he doesn't get reinfected with c.diff?

 

[Farmwife]

Hi and welcome aboard.
So sorry you had to find your way here.
c. diff is something we know all to well around here.
How long is he on the antibiotics? Is he on probiotics yet?
My Grace went through 2 round of meds to stop it. Nasty stuff for some.

I hope the meds will work great. :thumleft:

 

[Lori1973]

Thank you David for looking that up. There was so many things that happened at once that we were overwhelmed on what could of took place first. I was wondering if that wasn't what happened. Yes, they instructed us on the risks of the parasite and c-diff. Hopefully we can keep that from coming back.

 

[Lori1973]

Farm girl... He was just on the antibiotics for about three weeks. So far so good. I am waiting for Dr. to call regarding some questions I have on supplements. That is also where it gets confusing..