Possible UC in 2 year old

HI all,

I'm writing to ask advice about my grandson who has just turned 2 years old and has had gut issues his entire life. Here is his background, its quite long because the poor thing has had so many health issues in his short life. 

At 2 months of age he was diagnosed with silent reflux and put onto Losec suspension which controlled his symptoms. Once my daughter started him on foods he never tolerated any fruits, beef, dairy, soy and a few other foods such as eggs. By 10 months of age he was on a formula called Allerpro and could eat chicken breast, sweet potato, pumpkin, salmon and carrot. At 10 months of age when his health deteriorated he was diagnosed with a huge cancerous tumour called a Rhabdomyosarcoma which was attached to his rectal wall near his prostate in his pelvis. He's been through a year of chemotherapy, surgery to remove the tumour and brachy therapy radiation at the tumour site. He's now been in remission since April!

However a couple of months into his treatment he began getting severe abdominal pain, gas, mucousy poos, green diarrohea, night wakes. Our allergist suggested a change in formula to an elemental one called Neocate Gold and to take him off all foods which is what my daughter did. After his oncologist did a stool test it was found that he had c diff. He has had 5 doses of Flagyl and 2 doses of Vancomycin and the c diff is still there. This was all going on while he was still having chemo. 

He's recently just had an endoscopy and a sigmoidoscopy and I want to post his results to see if you have any advice on what could be going on with him? I have ulcerative colitis so the concern is that he is showing early signs?? Particularly in his finding of "granular mucosa"?? He has always had gut pain and issues but the cancer/chemo/c diff had made it much worse to the point now to where he still can't tolerate any foods besides his formula. 

Any advice on what could be going on would be appreciated. 

 

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Granular mucosa appears to be nonspecific. It can result from radiation ("radiation enteritis"), it can be a sign of Crohn's, and it can appear when the bowel is adapting after surgery. Try not to give it too much meaning. C. diff alone can cause plenty of trouble. He may need a fecal transplant (FMT) to get rid of it, since the antibiotics aren't working.

I'm sorry your little guy is going through this! I hope they figure it out.

There's probably no research on FMT in children. Once Vancomycin fails, though, they're really out of ideas. They have to compare a known risk (Vanco-resistant C. Diff) against an unknown risk (FMT in children), and their heads are spinning. Ask them if they have a better idea. The answer is likely to be "no." I'm hoping for the best.

Gee, I don't know, since C. difficile infection pretty much mimics UC. There was no indication of ulcerations or loss of the normal structure of the colon. Sure, it is possible this is early UC, but I think he has enough trauma to the bowel from his treatment and infection to cause granular mucosa without IBD.

Best wishes for his recovery and I hope things smooth out for him.

Jan

Poor little guy.  My heart goes out to him and you all.  I've always had a hard time digesting basic fruit and vegetables.  I cant live without digestive enzyme chew tablets or pill with every meal.  It helps my stomach digest food so it doesn't sit there for hours and hurt like heck.  An all natural store has them in chewable form made from papaya extract from the earth.  My daughter takes them too when she eats gluten.  She's allergic to gluten and I'm allergic to dairy and these enzymes help greatly when we get into foods we shouldn't have.  I hope your little guy finds relief soon♥️

Thanks for your replies, were just praying he stays in remission, he's really suffered in his short life but has coped with everything so well, even the nurses and doctors say he's so good, from having his chemo port accessed to undergoing all forms of tests and procedures,  he just puts up with it, never cries, really laid back, but still upsetting that he has to go through this.

We are really interested in the digestive enzymes and wonder if you can give any further info on them, name and manufacturer, we can then find out if it would be suitable for him, it'd be nice for him to be able to eat somethng other than the special formula!!!

My daughter is also allergic to dairy so they would help her too, as she normally avoids troublesome foods or gets bloated and pain.

Thanks again,

Heather

 

 

 

 

 

 

 

 

 

 

Hi Heather, 

No ideas, just warm wishes for a quick recovery and hopes that all of this is soon over...he may need a very simple, very basic diet...Something like fish or chicken, simple proteins, few or no carbs or dairy and maybe juices...juices or smoothies may be the ticket or soya...

Poor little kid...my heart breaks for you.

Hugs

Sharon

Hi Sharon, thanks for your reply. Blake has multiple food allergies, it could be all the chemo, drugs and radiation, but atm he can only tolerate a special formula, he's also now been diagnosed with a bone infarct from the treatment, does seem never ending but he will receive all the treatment needed.

My daughter is taking him to his Allergist today, apparently there is a drug he could have so he can tolerate other foods, and its worked on other toddlers with multiple allergies, her GP refused to prescribe as 'too strong' so we'll see what happens

By the way I've followed your various adventures with the Koch pouch over the years, and have recently had to return to the Illeostomy after 25 years of a J pouch, unfortunately the Koch pouch is not really performed here, too many problems I was informed when I asked about it recently, mainly valve slippage, so stuck with the bag for the foreseeable future

Heather

Hi Heather,

I feel horrible for the little fighter...Sometimes they can 'grow out of' allergies which makes life so much better...maybe not the diary which is tough but a lot of the others. 

And digest enzymes may not help with the allergies but can make what he does eat easier to digest. Allergies can also be implicated in leaky-gut syndrome... where too many food particles or molecules (or too large) manage to get through the lining and into the bloodstream...(or at least that is what I think I remember about it.)

In which case there are probiotics for that...they say that they help...

As for the K pouch or the BCIR...yes, for some (me and a couple others here) they are fraught with complications (usually something to do with our own biology) but for others, it is a one-shot deal and they sail through the procedure to enjoy a long, healthy and happy life that is bag-free...

If you have the possibility or the opportunity to see a specialist that does them then go and ask questions...you never know...and it may be worth the shot for you.

I am not a k-pouch-pusher but I do believe that if we have the chance to live our lives the way that we feel most comfortable and 'free' then we should try to.

Hang in there...

Some people say that God only gives us as much as we can handle but I am starting to wonder if he hasn't off-loaded some of some other people's problems onto us...

Sharon

 

Hi Sharon, Blake did have some good news, his last test for c.diff came back negative, after a very very long time he seems to have finally overcome it. He is however having alot of digestion issues still and we hope they will be overcome very soon and he can have a normal and happy childhood

My daughter has seen a Naturopath regarding leaky gut, her GP downplayed it though, made some comment about Naturopaths always blame a leaky gut. She didn't offer an alternative tho, and the Allergist wasn't much better

I think they're all blaming his chemo, endless medications and general inflammation in his gut and of course they could be right, he may just need time, but he did have some improvement on  Slippery Elm

I think Koch pouch is a very rare op in Australia, so just have to accept it, tho it would of been great 

Thanks for your help

Heather

 

 

 

Ok, I understand...most doctors do not believe in it...tell her that probiotics can help, are 'harmless' unless he is allergic to dairy or he can get his share from anything that has been in brine.

I do not believe in Hocus-pocus either but sometimes traditional medicine can be helped with paramedical advice...

Keep me posted

Sharon

Hi Sharon, thanks for your help, her GP has recommended probiotics, so we'll see if it helps, the allergist doesn't really help, she did recommend his formula, and said its a complete food for him and wouldn't need anything else, and he is gaining weight, so thats good, it'd just be nice to give him a proper dinner and spoil him a bit afterall he's put up with and still has to go thru, I really feel sorry for my daughter when Blake's cousins are with him and they just eat anything and everything, treats all day and of course he can't, and when the other kids have slipped him a treat or he's helped himself he really suffers a colic like pain for hours, seems so unfair, all we can do is give him everything he needs, hugs and kisses and make his life as easy and fun as possible

Thanks Lablover for your cyber hugs, if Blake knew he would appreciate it, he's a very loving little boy, loves his cuddles and kisses

 

Heather

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