Daughter recently diagnosed with Crohn's

[ashishbagaria]

:sign0085:

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

 

[2thFairy]

bumping this up so it will be seen

 

[moogie]

When I read you I was reliving my childhood. I was DX when I was 11 or close to that age.

Small dosage of Steroids would be pretty normal I expect with children. I know the higher you go the more complications you will have. One ting though When I started steriods I started to gain weight right away.

As for the rest I have no idea sorry.

One thing I can say though is get a doctor you can really trust and follow his or her instructions. As for now I would prescribe patience. Give it more time and see where the doctor brings you.

Good luck to you and yours.

 

[Keepingfaith]

Hey! :welcome:

I'm sorry your daughter has been DX with this condition but you've found the right place for support! There is a forum for parents of kids with IBD & they are a great bunch of people! I was diagnosed around your daughter's age also & I know it is still tough dealing with this as a teenager but it has only made me stronger! I'm very petite for my age(I've loas around 90 pounds in the last year) & I find that eating a lot of high calorie snacks, yet low in fat, have helped me sort of maintain my weight.

To answer your questions:
1) It depends. What is the dosage? She probably won't see any improvement yet with the asacol but if she's on steroids they should work quickly for her if the dosage is right. I certainly wouldn't pull her off the steroid after 10 days. She should taper & it usually takes months for people to taper.

2) Again, it depends. Everyone is different. I wouldn't expect something remarkable but she should feel some relief.

3) As soon as she gets her disease into remission, she should start gaining weight or stop. I have never been in remission and my growth is kind of stunted because of it. I am still continuing to lose weight from the malabsorption. As a rule of thumb, when sh eis flaring, like now, she should take however many kilos she weighs, multiply that by 40 and whatever number you get, that's at LEAST how many calories a day she should be eating. The E D also usually goes away when the disease settles down.

All I can say is find a GI you can trust and before adding any herbal remedies, vitamins, supplements etc. ASK the Gi first because they can interact with her medications and only make her more ill.

:hug: I hope she gets on the right medication & finds a diet that works for her so she can get relief and go into remission!

Take care!