Daughter recently diagnosed with Crohn's

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Hi, we stay in Kolkata, India. Crohn's is still rare in India but Tuberculosis is an endemic here. My Daughter 'Ishi' is 12 yrs. 8 mths old. In August 2011, she had some abdominal issues and slow-fever which got cured within w0 days on it's own. But then her weight had come down from 31 kgs. to 28.5 kgs. Between then and February this year, she seemed fine and didn't have much fever. She was active and led a normal life though she was below-average in weight in built.

In February this year, she again started having slow-fever, etc. Her weight had come down to 25 kgs. She went through a huge number of tests of Stool, Urine, Blood, USG, X-rays, etc. Her ESR and CRP were high which indicated hig inflammation, but did not specify any disease. Even TB was found to be negative. The doctor prescribed a wide-spectrum antibiotic for 1 week. This got rid of her fever and other issues. So, we thought it was some infection which got cured by the antibiotic.

Again in May this year we checked her weight. It showed 23 kgs.! She had fever, diet-loss, etc. We again consulted the doctors and this time they suggested CT Scans and Colonoscopy. Though the scans were clear, they found ulcers in the small intestines. By this time, she also developed Erethyma Nodosums. It could have been TB or IBD, as the symptoms are very similar and TB is more common in India. The Biopsies of her colonoscopy eliminated TB and therefore the conclusion was Crohn's.

The doctor has prescribed small doses of Steroids (Budez) and Pentasa for 10 days. His opinion is that we should start with smaller doses due to the side-affects and then, depending on the response, the dosage would be reviewed. The 10 days will be over tomorrow and we will be meeting the doctor again.

In the 10 days of medication, her fever came down a bit and the frequency of abdominal pain also reduced. But her weight has come down to 22.5 kgs. and a new erethyma nodosum has cropped up, though the old ones have subsided. There is minor improvement in her diet.

In the last two days the fever has risen and even touched 103 deg F. The doctor has prescribed an antibiotic for 5 days. Until now, she was not being given any antibiotic.

We have a few questions for all of you.

1. Should we have started with a small dose and gradually increased it or started with a full dose and reduces it once the inflammation subsided?
2. Is 10 days of medication sufficient to show substantial improvements?
3. How soon should the erethyma nodosum and weight-loss stop?

Since we are new to this and the disease is not very common in India, we are a bit dependent on the research and forums available on the net. Thanks for reading through this and we'll appreciate any help from all of you.

:confused2:

Best Wishes,

Ash
 
Welcome to the forum! You will find lots of helpful information on here. I don't have any experience with the medications your daughter is on, but from everything I read, most Crohn's medications can take quite a while to be effective apart from the steroid. I am not sure either if it is better to start at a high dose and then reduce or start slowly and then increase. Doctors seem to do that differently as well. My son has started Azathioprine 7 weeks ago and we are starting slowly and then increasing a little bit at a time. Not sure if it's doing any good either.
Good luck with the doctors tomorrow and hope she feels better soon.
 
Thanks a ton! Will keep you posted with feedback from out doctors. Any suggestions are of great help as of now. Appreciate it.
 
Welcome to the forum. I think there are experience people on this site like David and Dusty who will be able to give you some great advice.

Good luck with your search for information and treatment options.
 
Hi welcome to the forum. I am so glad you are here as there are many wise and wonderful parents who will help you on your way.

I am pretty new myself. I am not sure about your question regarding starting slow and increasing but it seems to me here in the states they usually start steroids high and then reduce. A lot of the drugs used leave the kids immune suppressed so maybe that is why they are starting low and working their way up? I know with TB in the area you would not be able to use the drug (Remicade) my daughter is on.

Sorry but I also don't have any experience or knowledge about erethyma nodosum but you have just given me something else to go look up...see you are education already on your first post!

One treatment that I encourage you to look into is Enteral Nutrition. There is a thread here called Kids on EN. Typically the kids drink or are delivered a formula through a naso gastric tube. The treatment lasts for about 6-8 weeks on exclusive formula (no food or drink other than water although some are allowed a few things here and there and one member's daughter was allowed a full diet although that is rare). Enteral nutrition has been proven just as successful at reducing inflammation as steroids and has the added benefit of perfect nutrition and a great way to help get your daughter's body strong.

Even if you continue using medication the EN is a wonderful supplement to help nurish your daughter and provide rest for her system. We use EN because our daughter's medication wasn't working 100% and needed a little help so EN helped us avoid adding a second drug.

I am sure Dr. Dusty will be along shortly with all her wonderful questions and advice.

Good Luck!
 
hi, and welcome!!

We also started on a higher dose of steroids, which was effective fairly quickly. I haven't heard of starting with a low dose before. *shrug*

Other than the steroid, I second the opinion that many of these drugs take some time to show whether or not they are working. Patience is so difficult while you are worrying about your little one, i know!
I also agree that EN may be effective in slowing/stopping the weight loss.
Good luck to you...glad that you found your way here, and keep us posted with Ishi's progress!!
 
Welcome to the community, we're glad you found your way here :)

While it was nice of Catherine to mention my name, I think you will find that it is the collective wisdom, knowledge, and support of the amazing members here that make this forum so special. Collectively, we know infinitely more than one person ever could both from personal experience and research alike.

You mentioned the steroid "Budez" which I am not familiar with. Do you know if that is Budesonide (Entocort)?

What kind of antibiotics have they had her on? I ask because I'm curious if they thought about the possibility of Yersinia which can mimic Crohn's Ileitis. I know Yersinia can be prevalent in India.

I can only echo the above sentiment regarding Enteral Nutrition. It is a wonderful treatment option. In addition, some parents here have utilized a treatment called low dose naltrexone and had wonderful results. I'm not sure if you'd be able to get it there, but it's something to look into. I did a little research and naltrexone is being used in TB patients (not for the treatment of TB, but for alcohol dependency) without problems. With rampant TB there it may be a good treatment option.

Have any blood work results been abnormal?

And finally, I would ask that Ishi be tested for vitamin B12, vitamin D, and folate deficiency to start. They are common deficiencies in Crohn's patients. And due to her size I'm guessing malabsorption is an issue.

Again, welcome, we're here for you :)
 
David the reason why I mentioned your name was. On our journey to Sarah dx we had a detour with possible thalassemia. I joined a thalassemia forum from this forum realised that patients in India do not have ease access to threatments that we take for granted. Lot of these parents were using supplements with their children as there is greater available of these and you appear from my reading to interested in vitamin and minerals, and that why felt you maybe of assistance.
 
Hi Ash and :welcome:

I am so very sorry to hear about your daughter...:hug:

Has she had stool testing done to rule out gastrointestinal infections as a probable cause of the findings?
Having said that her EN sounds like an extra intestinal manifestation (EIM's) of Crohn's.

1. Should we have started with a small dose and gradually increased it or started with a full dose and reduces it once the inflammation subsided?

Is this with both medications that were prescribed? As a general with steroids you do not start slowly and work your way up as the idea is to hit the inflammation hard and fast and then start to reduce. I am not sure with the Pentasa but since it is a fairly inoffensive drug I don't see why you would.

2. Is 10 days of medication sufficient to show substantial improvements?

Budesonide (Budez) is the milder of the two most commonly prescribed steroids and Pentasa (5ASA) is a mild starting drug for treatment of IBD. Unless your daughters Crohn's is classified in the mild - moderate (at most) range then I think that these drugs will be sufficient to bring the inflammation under control and her persistent symptoms are likely testament of that. Granted 10 days may be insufficient time but by the same token her symptoms shouldn't relapse or worsen once treatment is commenced and established. If they do then treatment needs to be reviewed.

3. How soon should the erethyma nodosum and weight-loss stop?

This is difficult to say as it will vary with everyone but once inflammation is brought under control then these symptoms should subside. One way to test response to treatment is to have her CRP tested again.

I think one of the things that needs to be established, and this should have been reported in her colonoscopy results, is what her disease is rated at. The fact that her growth has been delayed suggests that disease has been present for some time. If her disease is rated as moderate to severe then I personally believe that the present treatment regime is not sufficient.
There are two trains of thought on how to tackle treatment of this disease. The step up approach which is what your doctor is taking...start slowly and step up if and when each drug fails. Or the top down approach...start out hard and fast in an attempt to get things under control ASAP and minimise damage. The ability for a doctor to take the top down approach may also be dependent on what country you are in and the health system that exists there.

As has already been discussed EN is a very good treatment either as an initial step or used in conjunction with other treatments. It will rest the bowel and provide all the nutrition that is required and in children this is particularly important.

I hope things settle soon for your daughter. Good luck!

Dusty. xxx
 
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