Newly diagnosed 11yr old. Advice Much Appreciated

[aburns0213]

My newly turned 11 year old daughter has Crohn's. Well that's what they told me. It has taken them since Nov, to determine this. Since then she has had diarrhea 5 times a day and it wakes her 2-3 times each night. For 3.5 months! She's skinny as a tooth pick from weight loss, has no energy, runs low fevers, doesn't want to eat or drink due to the pain from swallowing.. she has the ulcers on her esophagus as well. After all the testing, xrays, CT Scans, Colonoscopy, Enoscopy, etc etc. 1st doctor was so brief with me said it was Crohn's he wanted to get her on Remicade ASAP, spoke very quickly then went on his way. I was dumbfounded. Taught myself about Crohn's from Google, taught myself about Remicade, from Google.. After realizing I couldn't handle dealing with a doctor long term, who didn't spend more time with me, I requested to be moved. My daughter will be seen at a Children's Hospital this Friday. In the meantime they did put her on Prednisone a week or so ago. It worked right away.. for a few days.. And now she has diarrhea again. Is that normal? To work and give my daughter utter relief and intense hunger.. and then to just stop? Anyway, our new doctor has looked over all her records and let us know they will be discussing Azathioprine with us Friday. Is there a reason 1 doctor was going to do Remicade and the other wants to try Azathioprine? So me and Google were friends yet again learning about Aza. Is it true it may take months for it to start working? My poor child looks anorexic, pale, ugh I hate this for her. Should I be leaning one way or the other on the 2 recommended treatments from 2 different doctors? Thanks for anything you have to offer. I'm kinda tired of Google...

P.S. I got a letter from 1st doctor saying her SIBO test came back abnormal and to go on that special diet for it.. really they can't call me?!?! I'm taking the letter with me to doctor 2 this Friday smh..

 

[cmack]

I wish you the best. Keep looking for answers. :ysmile:

cmack

 

[Maya142]

Hi and welcome!

I would wait and see what the new doctor has to say. I'm glad you are getting a second opinion - it is important to have a doctor you are comfortable with.

In terms of medications, there is no "right" answer. I can say that now doctors are tending to use the "top down" method - that is, using the drugs that work best first to get the child into remission quickly. The idea is to prevent permanent damage to the intestine, prevent complications like surgery, abscesses, strictures etc. and to give them chance to catch up on weight gain and growth quickly.

Other doctors prefer the "step up message" - using the "milder" drugs first and then working up. However, many doctors are moving away from this method, because why not use what works best?

Azathioprine does take longer than Remicade to work - usually 6-8 months. Remicade usually works within 3 months. For some kids it works immediately (after the first infusion) and for others it takes longer (several infusions).

My daughter started on Remicade and Methotrexate. It took 3-4 infusions before she felt MUCH better. 8 months later, her colonoscopy had improved a lot - all the ulcers in her colon had healed and she just had mild inflammation in her terminal ileum.

There is a lot of good info all over the forum, including research and studies.

Prednisone does tend to make kids hungry. It is not a "miracle cure" - she may still have some symptoms on it, but it does tend to get the disease under control. A maintenance medication is usually started with it (or shortly after it). If your daughter isn't improving at all on Prednisone, I would talk to the doctor, she may need a higher dose.

Remember that it took her intestines a long time to get to this state. It will take a long time to heal.

I'm going to tag some other parents who can weigh in:
Clash, my little penguin, pdx, crohnsinct, Mehita, Jmrogers4

Exclusive Enteral Nutrition is another option to induce remission (usually instead of steroids). It's a formula only diet for 6-8 weeks. It is actually a first-line treatment in other countries and is becoming more popular in the US.

Kids either drink the formula or use an NG tube. Some kids are able to tolerate polymeric formulas like Boost and Ensure/Pediasure. Others need special more broken down formulas like Peptamen Jr or Pediasure Peptide. Many kids continue with supplemental enteral nutrition for weight gain and growth (including my daughter), either by drinking the shakes or using a feeding tube (my kiddo uses a feeding tube and thinks it's MUCH better than drinking the shakes!).

Good luck!

 

[Maya142]

Here is some info on the risks and benefits of various IBD drugs:
http://programs.rmei.com/CCFA139VL/

I can say that my daughters have both not had any side effects with biologics at all, except some tiredness after Remicade infusions (and honestly, I think that was due to the Benadryl they were pre-treated with!).

They have had many more side effects with drugs like Azathioprine and Methotrexate.

They are both on a combination of a biologic and immunomodulator right now.

 

[my little penguin]

:welcome:
Sorry you had to find us

There are two schools of thought
Top down use the most effective drugs first to prevent the most amount of damage by getting everything under control
As quickly as possible

The second is bottom up
Use the least effective drugs (sometimes fewer side effect risks )
And hope to save the other meds for later
This drags out the healing process and can take months to a year to find the right drug combo

When Ds was dx almost 6 years ago
It was all bottom up

Took a year to get him to a good point
-once he started remicade and failed all other drugs

He tried
Pentasa
Then 6-mp
Then 6-mp plus allopurinol(due to liver issues )
Then added asacol to the above combo
Then switched to mtx with asacol
Then finally after three months of pred while on mtx
They switched to remicade

Remicade typically takes 6 weeks to work
Aza (imuran ) takes 3-4 months to work

Aza is old school and has a higher risk of lymphoma
Most GI have switched to methotrexate(mtx) for kids if they are not using a biologics
Mtx takes 8 weeks to work

Een - exclusive enteral nutrition (formula only no food ) can be added
To induce remission and promote healthy weight and growth
Has a similar success rate to steriods

Ds uses supplemental nutrition to maintain his growth and weight with elemental formula
Neocate jr

But some kids had success on een with polymeric formula ( kids boost ,pediasure etc..)

Plenty of articles in the ped research section


Ds was dx at age 7 and now is age 13
He currently takes humira plus mtx

Good luck

 

[my little penguin]

http://www.crohnsforum.com/showthread.php?t=43002


Pediatric research section

Some links may be broken
Since it's hasn't been updated in a few years

 

[aburns0213]

Thanks already. I feel like part of me should have take that Tuesday appt and started her Remicade with the 1st doctor. I could have already been helping her. But instead I freaked out and got a 2nd opinion. smh... I will def ask on Friday what is making them not choose Remicade.

 

[Maya142]

Honestly, a second opinion is a good idea - a second set of eyes can help. And it sounds like your first GI wasn't very good at explaining things.

Hang in there. Someone once told me to think of it as "a marathon, not a sprint" -- it is going to take a while to get everything under control. The first year is typically the hardest. Once you find the right combination of medications for your kiddo, things will get easier.

I would encourage you to think about supplemental enteral nutrition to help her put on some weight and to help with growth. My daughter gained 27 lbs using formula. She went from being severely malnourished, hospitalized for being severely underweight and always exhausted to being a normal, happy teenager. She says she feels a LOT better now that she is getting enough calories .

Drinking also may be easier than eating if she has ulcers in her esophagus. Boost, Ensure and Pediasure are the most palatable shakes.

 

[pdx]

You've gotten great information and advice above, so I'll just add that my daughter was very similar to yours at diagnosis. We started right in with Remicade, which I'm glad about, but it didn't work for her right away. She ended up needing EEN, steroids, and methotrexate too. EEN was very effective for her, so definitely consider that as an option to help your daughter while you wait for maintenance meds to start working.

Good luck with all the decision-making, and I hope your daughter starts getting better soon.