Looking for some advice please

looking for some advice please

Hello,my name is lynda and i have 4 children,3 girls and a boy,my boy is called luca and he is 5 months old,when he was born he wasnt well and was in scbu for a few days,he was fed by naso gastric tube with breast milk and topped up with SMA gold,he couldnt feed very well afte he came home,always crying and kicking his legs in pain when feeding,he was prescribed colief which gave him some relief but he still suffered with diaorehha,constantly hungry,windy and sicky,he was diagnosed as being lactose intolerant,he was placed on pepti junior formula and the day after he started it he developed ulcers on the sides of his tongue,he was passing black oily stools and not gaining weight (he was 9lb8oz at birth) my health visitor talked to a dietician who said he wasnt absorbing fat properley and he was put on a different milk called pregestimil which has a different type of fat in,he has seemed ok on this milk,still grumpy but better,his poo has been a mixture of very dark green diaorreha and stringy mucous,and he still has ulcers on his tongue,he had a paediatrician appointment today and the consultant thinks he may have chrohn's or ulcerative colitis,he had loads of blood tests done and i have 2 pots to get stool samples into,i would just like to know what experiences people have of very young babies and children with this disease and how it affects the children,i know it hasnt been diagnosed yet but i like to know what im facing if it does turn out that way,thanks in advance for any input you can give me.

lynda x

I once worked with a person whose daughter had a newborn that could not take or hold down food. The doctors were completely stumped as to what the problem was. The baby was deteriorating rather quickly so out of desperation they brought the baby to a Chiropractor. A slight adjustment to the neck of the baby resolved the problem.
The theory was that during birth something was displaced and caused a nerve problem that messed up the stomach.

It is unlikely that this would be the case in your situation, but it goes to show that the cause is not always what you expect.

I wish I could help answer your questions but I do not know too much about this disease yet.

Best Regards

D Bergy

Hi Lynda.

Well, I started showing symptoms at four, and was diagnosed when I was eight (in 1989), so I wasn't nearly as young as your son. But I've moderated support groups for kids with IBD, and have been a counselor at IBD summer camp, so I've met a lot of kids who were diagnosed as infants.

It's hard for me to put into words, though, how the diagnosis will affect Luca. I'll do my best, though (based on extensive personal experiences).

If the stool tests show signs of Crohn's or Ulcerative Colitis (besides ruling out an infection, or parasite, docs also test for minute traces of blood in the stool, which is generally considered a symptom of IBD) then Luca's doctors might approach you about doing a pediatric infant endoscopy.

Pediatric infant endoscopies are rare but they certainly do happen (I've met quite a few parents through support groups who had babies as young as Luca who had to go through an infant endoscopy). If the docs do ask your permission to do this, be sure to ask them how many infant endoscopies they have done, and how often. Since it's a rare procedure, it's important to make sure that you're comfortable with all of the doctors involved (the American Medical Association recommends at least three different GI/endoscopic doctors to be on-hand during an infant endoscopy--a pediatric GI, a pediatric endoscopist, and an adult endoscopist--not including nurses, and anethesiologists).

The endoscopy would confirm a Crohn's or Ulcerative Colitis diagnosis. It would also allow the doctors to see exactly how the disease is presenting itself in Luca's digestive tract--if he has ulcers, inflammation, or other symptoms of IBD. It will help the doctors decide how to treat Luca, if he is diagnosed with IBD.

Which is where the good news comes in. Infant treatments for IBD have vastly improved since I was diagnosed as a child in 1989. In 1989, docs only had a few meds that were used to treat IBD (corticosteroids and sulfasalazine--corticosteroids are still used today, and sulfasalazine is now only one small part of a group of drugs used to treat IBD, and there's a whole lot more treatment options that I don't need to ramble about right now) and, since infant and child IBD diagnosis were more rare then, there were problems with dosage.

I'm probably not explaining this well. In the past 18 years, many more infants and kids have been diagnosed with IBD (it's still rare, though) and docs have not only learned a whole lot more about IBD, they've also learned how the drugs work in infants, and children. In 1989, my pediatric GI had a very difficult time deciding how much of a particular drug to give me, since every single prescription drug on the market is made for an adult (in regards to dosage) and using them in pediatric treatment is a bit tricky.

But docs have made great strides in treating infants and children with drugs meant for adults. All of the kids who were diagnosed with IBD over the past 20 years have helped docs learn how these drugs work in children, and what the proper dosage is for a young child. If Luca is diagnosed, he'll have docs with 20 more years of knowledge, and experience, than when I was diagnosed.

If he does get an infant endoscopy, and the docs confirm an IBD diagnosis from it, then Luca's doctors will be able to put together a treatment plan that will be safe for Luca (because of how much docs have learned about how adult drugs work in infants).

I'm so sorry about how long and rambly this is, and I'll try to not go on much longer. When I was diagnosed, my pediatric GI had to start me on incredibly low doses of meds because she didn't know how to safely use the meds for young kids (I was lucky, though, to have a pediatric GI who is considered to be one of the best GI pediatricians in California). So, even though my Crohn's was very severe, the treatment for it took YEARS to figure out, simply because my doctor had to slowly give me higher dosages of the meds because she wasn't sure how much medication a child could handle.

Thankfully, there are now safe, and accurate, guidelines for treating infants and children with IBD. If Luca is diagnosed with IBD, his doctors will talk to you about his treatment options, and (if that happens) please feel free to come back here and let us know what the doctors are recommending. While none of us here would ever give medical advice--we're not docs, just people with lots of experience with IBD-- we CAN tell you how the treatments have worked for us, and what you can expect from them.

Again, sorry this was so long, but I hope it was helpful.

Katie.

Luca's Mum first thing you may want to do is to ask your pediatrician if Luca's might have 'Failure to Thrive' syndrome. It's VERY rare, but I apparently had it as a child 52 years ago, and my youngest had it 18 years ago.. Doesn't matter whether its breast milk, cows milk, goats milk, etc.. I don't recall how I was treated, and as for my son, even his treatment is now 18 years out of date.. but essentially consisted of the NICU force feeding him non milk based products.. cereals, soy, etc., etc.. It worked.

Anyway, if your ped rules out Failure to Thrive (some of the peds at the NICU where my son ended up hadn't heard of it - that's how rare it was considered back then) then have them bring in a GI referral.. maybe an endocronologist (sp?) too.
There must be some internal medicine specialist who can tell you exactly whats up

katie thankyou for your reply,it was very imformative,the prospect of chrohn's is a scary one for me,i have a daughter who has a form of autism,so knowing the link between bowel disorders and autism i am terribly worried about this,if it does end up with him needing an endoscope then his grandmother is a senior nurse on our local endoscopy unit so she can advise me.

Hi kev,he doesnt have failure to thrive syndrome as he is thriving,as in he is gaining weight albeit slowly.Thanks for your input though!

Hi Luca's mum, so sorry to hear about you little boy, I hope they can find a solution soon. I am the only person in my family with crohns (but my brother has reactive arthritis which is linked to bowel disorders also) and I didn't start with symptoms until I was 20, so I'm of no help unfortunately. I wish you all the best though.


Ruth

Thankyou Ruth x