11 months old baby with UC. In need of help.

[Mette]

Hallo everyone

First of all, I would like to say, that I am so happy, that I have found this forum! My Daughter, Astrid, is 11 months, and she has just been diagnosed with UC. We live in Copenhagen, and we have been informed, that never before has a child so young been diagnosed with UC i Denmark. This makes it very difficult to get information and advice about our situation, and there is also a lot of insecurity about her treatment and prognosis.

I was therefore so happy to find this forum and have the opportunity to talk to other parents, who have small children with this disease.

Our daugther have had bloody loose stools, since she was two months, and her growth is set back. Fortunately she has never been in pain. About a month ago we started treatment with 14 mg prednisolone a day, which helped very quickly, and she now has normal stool and is beginning to gain weight. Two weeks ago we started giving her pentasa in granular form, which is supposed to take over for the prednisolone. But its quite a challenge getting her to take the pentasa, since its in granular form, and I am worried, if we can obtain a stable dose over time.

The problem is, that the danish hospitalsystem have never treated such a small child with UC before, and therefore they dont have any experince with, what is best, - and most of the medicine they have in their stock is in pill-form, and can not be used to give an infant. I would therefore be extremely gratefull, if any of you out there, who have small children with UC, could tell me, what treatment your child has recieved?

Our doctor has mentioned, that Salazopyrin (sulfasalazine) could also be a good choice, but the hospital has not been able to get a hold of it in liguid form. Do any of you have children, who are treated with salazopyrin in liquid form?

It is so painfull to find out that your child has a chronic disease, and it makes it even harder, when there is so much insecurity about the treatment. Therefore, I really hope, that some of you will share your experience with us. I would be a tremendous help.

- Mette

 

[FrancisK7]

Hello Mette,

An 11 month old baby with UC is probably not unprecedented but it must be extremely rare. How did they diagnose her? With a biopsy and colonoscopy?

I should reassure you now and tell you there have been great advancements made in the past twenty years to treat IBD and UC is no longer a debilitating disease that cannot be helped.

Typically, in an adult, there are four steps of treatment:

1. Targeted anti-inflammatory medication in the 5-ASA family (Pentasa/Salofalk/Mesalamine)
2. Immunosuppressive drugs (6MP, Imuran)
3. Biologicals (Remicade)
4. Surgery

Steroids (Prednisone, Cortisone) can be given at any stage to address a particularly bad flare or to fight inflammation while a new treatment is started. This is what happened with your daughter, here. Steroids are amazing at treating inflammation but they are very damaging if used in the long term.

In the case of your daughter, she has no immune system that is fully developed yet, so I don't think immunosupressors would work on a baby. This is just an educated guess though, I would discuss it witht he doctor.

Sulfasalazine is a derivative of mesalamine. It's part of the 5-ASA anti inflammatory family of drugs.

I would guess at this stage in your infant's life the doctor is going to try and find the best combination of 5-ASA drugs that will properly address the inflammation created by the UC. Many people affected by UC live out their lives taking 5-ASA and nothing else.

I'll do some research this afternoon to find out more about UC in babies and forward you to any interesting article.

 

[Mette]

Hello Mette,

An 11 month old baby with UC is probably not unprecedented but it must be extremely rare. How did they diagnose her? With a biopsy and colonoscopy?

I should reassure you now and tell you there have been great advancements made in the past twenty years to treat IBD and UC is no longer a debilitating disease that cannot be helped.

Typically, in an adult, there are four steps of treatment:

1. Targeted anti-inflammatory medication in the 5-ASA family (Pentasa/Salofalk/Mesalamine)
2. Immunosuppressive drugs (6MP, Imuran)
3. Biologicals (Remicade)
4. Surgery

Steroids (Prednisone, Cortisone) can be given at any stage to address a particularly bad flare or to fight inflammation while a new treatment is started. This is what happened with your daughter, here. Steroids are amazing at treating inflammation but they are very damaging if used in the long term.

In the case of your daughter, she has no immune system that is fully developed yet, so I don't think immunosupressors would work on a baby. This is just an educated guess though, I would discuss it witht he doctor.

Sulfasalazine is a derivative of mesalamine. It's part of the 5-ASA anti inflammatory family of drugs.

I would guess at this stage in your infant's life the doctor is going to try and find the best combination of 5-ASA drugs that will properly address the inflammation created by the UC. Many people affected by UC live out their lives taking 5-ASA and nothing else.

I'll do some research this afternoon to find out more about UC in babies and forward you to any interesting article.

Thank you so much for your reply. It was very helpfull, and I'm very gratefull, that you will try and find articles on the subject .

She was diagnosed by coloscopy and biopsy. They are actually not entirely sure that it is UC, but they said, that it was the most probable. Her case is very mild. Her only symptoms have been loose, bloody stools and slow growth. At first they thought it was allergy.

I really hope that the medication can put her on remission, and that the UC will not get any worse. I don't know how this illness usually progresses? Does it have a tendency to stay mild, if it started out mild, or does it usually get more servere, as time goes by?

 

[FrancisK7]

The only way to confirm a UC diagnosis with 100% certainty is by histology. A biopsy is taken from the colon, then it is stained with special chemicals and prepared into slides so a pathologist can look at it under a microscope. This will tell him exactly what is happening on a cellular level. That way they can tell whether the colitis is chronic, acute, active or inactive.

When was your daughter's biopsy taken?

UC is only curable by surgery. 5-ASA medication do not actually treat the disease, only the symptoms, but this is often all you need.

As for the progression, it progresses in flares. Science does not yet understand what causes a flare, or what even causes the disease in the first place. UC is an auto-immune disease. The result of a genetic mutation gone bad that misconfigures the immune system. Sometimes it goes on a bender for no apparent good reason.

Typically though, UC that is chronically treated will erupt into a flare less often than someone who is untreated. And with drugs like Remicade, remission success is extremely high.

 

[sickinlk]

hey mette,
have you had a look at the parents support forum over in general IBD discussion. UC and Crohn's are very similar in treatments so im sure there's loads of people who can help you on there.
in answer to your question Does uc get worse. it can do, sorry.
every individual case is different though. lots of people have mild uc and it never progresses further but then like francisK7 it can spread through the whole bowel.
mines started of as proctitis and spread to the whole left side.
Its good she's responding to steroids and she could probably stay on them a long time till they figure out something different.
those pentasa grannules..... yuk I didn't like them and I even found them hard to take. jeez i wish you all the best. my heart goes out to you and your little one. i have 2 kids and its awful when they're sick. good for you being proactive and figuring things out for yourself. keep on googling.
ju

 

[Mette]

The only way to confirm a UC diagnosis with 100% certainty is by histology. A biopsy is taken from the colon, then it is stained with special chemicals and prepared into slides so a pathologist can look at it under a microscope. This will tell him exactly what is happening on a cellular level. That way they can tell whether the colitis is chronic, acute, active or inactive.

When was your daughter's biopsy taken?

UC is only curable by surgery. 5-ASA medication do not actually treat the disease, only the symptoms, but this is often all you need.

As for the progression, it progresses in flares. Science does not yet understand what causes a flare, or what even causes the disease in the first place. UC is an auto-immune disease. The result of a genetic mutation gone bad that misconfigures the immune system. Sometimes it goes on a bender for no apparent good reason.

Typically though, UC that is chronically treated will erupt into a flare less often than someone who is untreated. And with drugs like Remicade, remission success is extremely high.

Thank you for all the usefull information.
Her last biopsy was taken about a month ago. Our doctor said that the histological picture could not give a completely surden diagnosis, but he also said, that this was not uncommon with so young children. He however believed that UC was the most probable diagnosis.

 

[FrancisK7]

It's good that you already have a pathologist on the case. My years on the school bench are far behind but I am not surprised to learn it would be difficult to diagnose UC at such a young age. Cellular activity at that age is through the roof, and many things are in perpetual flux. If the condition is only mild for the time being, it's very likely 5-ASA drugs will be enough to keep it in check. I highly suggest you keep a detailed food and poopoo journal when she starts eating, in Excel or other spreadsheet program. After a few months, you may be able to pinpoint what kind of
food accentuates the symptoms.

As sickinlk explained, UC can affect any part of the bowel. Sometimes, inflammation will present in spots only on the left side, or right side. Sometimes just the rectum. And sometimes it affects everything, which is called pancolitis.

Crohn's disease shares almost identical symptoms with UC, but Crohn's can affect the entire GI tract. Which means you could get some inflammation in the mouth and esophagus in a Crohn's patient, whereas UC only touches the colon.

That's why some UC patients elect to have their entire colon removed if the disease has progressed too far. By removing the colon you are cured of UC. Crohn's patients do not have this option. This is essentially the biggest difference.

It looks like your daughter has very proactive parents and a great medical team surrounding her. I have no doubt you'll be able to handle this no problem

 

[Mette]

It's good that you already have a pathologist on the case. My years on the school bench are far behind but I am not surprised to learn it would be difficult to diagnose UC at such a young age. Cellular activity at that age is through the roof, and many things are in perpetual flux. If the condition is only mild for the time being, it's very likely 5-ASA drugs will be enough to keep it in check. I highly suggest you keep a detailed food and poopoo journal when she starts eating, in Excel or other spreadsheet program. After a few months, you may be able to pinpoint what kind of
food accentuates the symptoms.

As sickinlk explained, UC can affect any part of the bowel. Sometimes, inflammation will present in spots only on the left side, or right side. Sometimes just the rectum. And sometimes it affects everything, which is called pancolitis.

Crohn's disease shares almost identical symptoms with UC, but Crohn's can affect the entire GI tract. Which means you could get some inflammation in the mouth and esophagus in a Crohn's patient, whereas UC only touches the colon.

That's why some UC patients elect to have their entire colon removed if the disease has progressed too far. By removing the colon you are cured of UC. Crohn's patients do not have this option. This is essentially the biggest difference.

It looks like your daughter has very proactive parents and a great medical team surrounding her. I have no doubt you'll be able to handle this no problem

I really hope that the pentasa treatment will be enough to keep it in check.

Our doctor havs not mentioned anything about the effect of the diet on the disease. Are there any general rules to follow? She has been eating normal food for a couple of months now.

I am a biochemist, so I have read many scientific articles about infant IBD the last couple of months, but these articles often describe very severe cases, which are difficult to compare to our daughters case. Therefore I am so happy that I have found this forum.

 

[FrancisK7]

The world is so small, I have a background in biochem as well! You're well placed to educate yourself about the disease. Your scientific knowledge will also come in handy in the future.

There is no scientific evidence that diet has anything to do with flares or the disease itself, and yet, there is enough anecdotal evidence to suggest diet CAN have an effect. The truth of the matter is, everybody is different. A friend of mine has Crohn's and he can't drink coffee at all, whereas I have no problem with coffee. Any uncooked fruit or vegetables gives me cramps, whereas he has no problem with those.

For me personally, anything fibrous is to avoid. So I know longer eat whole grain bread or salads. I have to cook all my vegetables. Banana don't give me much issues, apples on the other hand forget it.

That's why a journal will come in handy. UC being an auto-immune disease also suggests the immune system is likely to have allergic reactions to other benign things.

 

[mf15]

You might look into this,I would think they could spot this quickly,but who knows.
Cows milk may be a cause. What is the child eating,breast fed,milk,formula
normal food.
Old Mike
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3165205/

 

[sickinlk]

mf15, funny you should mention this. my daughter was breast fed and when I tried to wean her to cow's milk formula, there would be blood in her nappy. this went on and on for months and she had loads of tests. the concluded that she was lactose intolerant (even though all her allergy tests were negative)and prescribed soya milk. she would vomit that crap right out.
after that failed and many other lactose free formulas, I started putting a small amount of cows milk in with the breast milk and she never had any problems after that.
she went on to milk no problem and today she love dairy with no repercussions.
I wasn't diagnosed with uc by then so I wonder now is she the same and was in a flare. ill be keeping an eye on her for sure.
ju

 

[mf15]

Ju I might guess her digestive system bacame stronger/mature,or perhaps using a small amount of cows milk you induced what is called oral tolerance. Whenever an infant exhibits rectal bleeding,the doc's should at least, consider diet.
Old Mike

 

[sickinlk]

old mike,
yeah whatever happened it was a relief to be over.

ju