New here, needing advice! :)

[Artsychic323]

Hi everyone- I'm Becca, and my daughter is only 4 years old and was diagnosed with IBD one year ago after her 3rd birthday. We call it Crohn's because that's the GI's best guess but she has a hard case to determine- it's really probably unspecified IBD. She's never had a very long time between flares. Her GI was moving towards remicade so we had to switch to seeing a Children's Hospital doctor since they offer financial aid for that treatment. But the new GI says she is considering trying something else first- a pediasure diet (80/20) and switching her from Apriso (which isn't absorbing well) to sulfasalazine. Does this seem like something that would help her? And why did the dr mention an NG tube...Brenna likes pediasure and would drink it...I am not sure if this is just another "band aid" on the problem that will just go back to flaring once we reintroduce foods. Thanks for any advice!

 

[my little penguin]

Aspiro and sulfazine are both the same class of drug -5-ASA
They are not typically enough to treat crohn's by itself .
Most use these meds in addition to other meds such as 6-mp or Imuran or remicade.

Drinking pediasure 80/20 is known as EEN ( formula only )
This can be done instead of using steriods to reduce inflammation but once food is reintroduced the inflammation will come back unless the right maintence med is given.
Most Gi 's try 5-ASA since they don't hurt much but aren't going to help much either .
5-ASA do work well for ulcerative colitis though ( sometimes )

That said most kids need a supplement of formula to grow /gain properly.
DS drank EEN orally peptamenjr for 9 weeks while we waited for 6-mp to kick in.
He now drinks 2-3 shakes a day plus food to keep his growth on track.

As far as remicade there are programs to help
Remi start pays the difference between the insurance and what is covered
Also most kids qualify for medical assistance through the state regardless of income due to the Ibd dx. This can be used as a primary or secondary insurance .
Most cover until age 18.

I will post some links

 

[my little penguin]

http://www.chop.edu/export/download/pdfs/articles/gi-liver/IBDday2014_Grossman.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2886370/

 

[Pilgrim]

Hi Becca. Just wanted to meet you because I also have a daughter who will be 4 very soon, and was diagnosed in the past few months with Crohn's disease.

When she had her scopes and they saw the damage, she was given sulfasalazine. When the biopsy came back about a month later I got a call that she had confirmed Crohn's - we were told that sulfasalazine doesn't do anything for Crohn's and to just throw it out. It is supposed to be helpful as MLP mentioned for UC so if the colitis is indeterminate then maybe it will help.

My daughter was prescribed a 6 week course of EEN. They did tell me at the beginning that we may have to use an NG tube. It motivated me to try and get her to drink enough by mouth to satisfy the calorie requirements that had been set for her. In the end she made it the whole 6 weeks with no other food allowed except a single diet popsicle and water each day. The first 3 days were hard. We were very matter of fact about it and she is smart, as I'm sure your girl is too. She knew it made her feel better. But there were a few tough moments along the way. A good book is "Getting into remission with Enteral Nutrition". I forget the author but a search engine will supply it for you. It really helped my daughter at the time. I wish we were still on it 100%, actually. Now we are about 75% formula with some food.

Anyway, depending on the nature of the disease, UC or Crohn's, the sulfasalazine could be just a band-aid. But the stats on EEN are really good. Do you know where her disease is located? It works a little less well on Crohn's colitis, but the numbers for that even aren't terrible, and it works particularly well in children in general. The first GI she had was trained in the States. He said that they aren't trained in the U.S. to use it much, but in other countries it is widely used as a first defense for children.

These are tough decisions. I hope that her initial treatment puts her into remission whatever you choose. Hope to hear from you here more.

 

[Farmwife]

Welcome to the forum.
I mom to another young one with unspecific IBD (Crohn's most likely.)
My dd is 5 but dx at 3 she also suffers with arthritis, bladder and skin issues.
My dd does EN/EEN and its as been wonderful at keeping her weight up.
She started with an n-g tube but now has a g-tube .
My dd was to sick to drink enough needed every day so the ng tube was a life saver.

She has tried LDN, Humira and full EEN but nothing got her into remission but.........................
Remicade + mtx shots has shown great promise after only two treatments:dance:

We have a Young Ones Support group . Please fell free to join.
http://www.crohnsforum.com/showthread.php?t=59511

 

[CrohnsKidMom]

Welcome to the forum, but sorry to hear of your daughter's recent dx. My son was dx'd last yr at age 8. We did not do EEN (did prednisone instead), but our GI highly recommended it. Like your GI, ours would have insisted on the NG tube too. Whether you do EEN or prednisone, these treatments will hopefully allow her digestive tract to heal. To keep it that way a maintenance med will have to be started too (ie Imuran, methotrexate, Remicade). And like the others have said, the ASA drug she is on now may not be effective. It is hard in the beginning, but do lots of reading (but don't overwhelm yourself), and ask lots of questions of the GI. This forum has been a great help to me. I hope your gal gets on the road to remission really soon.