Looking for other moms of kids with Crohns - our story, just beginning

So I have a few minutes to stop and think.  Of course what my minds first leads me to is my daughter J, who is 13 1/2 and was just this month diagnosed with Crohn's disease.  She weighs 70 lbs and is in the <1% for her weight in this age group.  Although she looks tall because of her skinniness, she is only in the 25th % for her height, which started out at the 75th% or better at birth.  She is just starting puberty (that is what got us looking to see what was wrong in the first place - delayed puberty).

J is homeschooling now because the stress of school makes her abdominal pains and anxiety worse.  She has trouble with the social realm of being a shy, sick girl in a private school who struggles academically.  She is much happier at home.  Academically she is doing fine, in my opinion, and is thriving with real literature like 101 Arabian Nights, Beowulf and soon will be studying Arthur and the Knights of the Round Table.  A couple years ago she had some neuropsych testing and found that she doesn't learn well auditorily at all.  I think this was her biggest struggle in the realm of a regular classroom.  She couldn't take the information presented auditorily at the front of the classroom and process it into words on a sheet of paper (notes).  She also had problems keeping up with written notes on the board getting put down into written notes into her notebook.

This week Dr. Wilson, the pediatric GI doctor, called and had a conference with myself and J's pediatrician, Dr. Schramm.  They want to start her on prednisone.  Frankly, I'm freaked out with the side effects of all the Crohn's meds.  I wish I could see into the future.  Will the meds help her overall in the long run, or will they hurt her?  Will she become dependent on them?  Will she ever be able to maintain as well as she is now (which isn't the best, but it's what we know) without them?  Will they help or will they hurt?

I hate that there is no good cure for Crohn's disease.  I have no one who is giving us hope of a healthy life - only of remission for weeks or years, with the fear that one day, without reason, it could relapse and she'd be back to square one in a matter of days, maybe worse.

I read books about Crohn's and diets.  They all seem so contradictory. One says low fat, one says low carb, one says all natural/organic, another says use supplements like Ensure or Boost.  Ugh!

I know I have to trust the Person all my hope comes from, and that is in the Creator Himself.  He knows J and this health problem that she has.  He is the Healer.  He may use the meds, or He may choose to heal her silently like He did for J's sister'ss scoliosis and her other sister's seizures.  Lord, help us.  This is too big for me, and I feel paralyzed with fear of making her worse.  Only You know the perfect cure for her sick body and emotions.  Help me make the right decisions.

CarolinAlaska:

First of all, you've come to the right place. I'm not a Mom, but I am a Dad. My Daughter was also diagnosed at 13yrs. of age. I and countless other parents that have come here, have written very similar posts to yours when first faced with this diagnosis.

It's a very typical and normal reaction to be extremely afraid of what this disease will bring, and worry about how scary all of the medications sound.

I would like to offer you some advice. You will get plenty of help here from others as well. There are alot of very good people here that will be able to help you.

Right from the start, you need to have a Pediatric Gastroenterologist that you have confidence in and trust. If you feel you have that, then a very typical course of action would be to prescribe Prednisone to get the early onset of symtoms under control. Prednisone works extemely well at getting the disease into remission, but not very well at keeping it there. After an 8-9 week cycle of tapering Prednisone, you will have to decide on which type of maintenace therapy is for her.

Usually after the first time on Prednisone and especially on the cusp of puberty, you'll find that everything lagging in your daughters development will catch up rapidly. My daughter grew 6 inches in 6 months. This is very common. Don't be so afraid of Prednisone right now. There are very real concerns about this drug, but it usually comes with repetitive use, not with your first time. Think of Prednisone like a nuclear bomb, that's how it was described to me at one time.

The other thing to realize right now is, this disease takes a somewhat different course for each individual. Your Daughter may present on a very mild side. She may do very well on a minor maintenance med.

You have plenty of hope.

Your absolutely right on with your faith. I certainly have prayers coming your way.

Good Luck, please keep posting updates and questions. Hopefully the road ahead will be much brighter than it seems right now.

 

Hello CarolinAlaska and welcome to the forums.

A little about myself and having Crohn's disease. I first had symptoms at the age of 7 and the disease went undiagnosed until the age of 13. At 13, I had been rushed to an ER, extremely dehydrated and vomiting. After being examined the diagnosis had been my appendix was about to burst. Rushed off to surgery, had my appendix removed, which wasn't the issue but the surgeons with having me opened up realized I had Crohn's disease.
Throughout those 6 years of being undiagnosed, I had many hospital stays to have numerous tests run on me to see what was wrong. Why I suffered from constant diarrhea and occasionally massive pain in my abdomen.
It was definitely harder on my mom than me, I was scared being in the hospital for 2 weeks but I know my mom felt helpless. Looking back as an adult, sheesh, I feel bad for what she had to endure with me.

Yes, there are medications that can be prescribed for us that are scary. One of the first medications I had been prescribed had been Prednisone. A very effective means to get a possible flare up under control, a great medicine for short term use but long term exposure, not so good.
I would suspect in the case of your daughter, she'll be prescribed Prednisone, a maintenance medication such as Pentasa (depending upon where the Crohn's is located), and maybe Imodium for diarrhea.

To answer your question best as possible in regards to numerous medications that can or will be prescribed at some point to treat her Crohn's, it's really going to depend how well she may respond to each medication.
The reason diets can be contradictory and I'm going to include the medications in my answer, a commonality is that we have Crohn's but how we respond and what we can tolerate as far as foods, is different for all of us.
I realize that isn't exactly a definitive answer but with the foods, the diets for example, we all differ with what we can eat and tolerate. It's a trial and error process and I would recommend keeping a journal.

Diet and Nutrition-
www.livingwithcrohnsdisease.com/livingwithcrohnsdisease/life_with_crohns/diet_nutrition.html

An excellent website to check out (if you haven't already) is the "Crohn's and Colitis Foundation of America."
www.ccfa.org/what-are-crohns-and-colitis/what-is-crohns-disease

I would recommend that the GI completes a blood work up to see if your daughter currently suffers from any deficiencies such as B12, Iron, Folic Acid, Etc.
Here's a table with nutrient deficiencies that we can typically have with Crohn’s-
www.crohns.net/Miva/education/articles/nutrient_Deficiencies_Associated_with_Crohns_Disease.shtml

I have had this disease for 40 years now, have had one surgery, a lower bowel resection and had been in remission for 15 to 16 years before Crohn's returned. Unfortunately, for some people the disease returns a lot quicker. It is important to manage the disease best as possible and for her to continue to do things that help her, eat foods that don't cause her any problems. All this to hopefully keep her extremely healthy.
I hope this helps a bit and please keep us updated on her progress.

Post Edited (Datawraith) : 1/22/2013 9:09:51 PM (GMT-7)

Hello CarolinAlaska -
My daughter, age 9, was diagnosed w/CD this past Thanksgiving. We are finally tapering her off of Prednisone after being on it for 7 weeks. We've started her on 6 MP and it took everything in me to give her that first pill...I hate all of the "CAUTION" statements. I feel horrible giving her the medicine, but I don't know what else to do. I pray to the ultimate Healer as well; I know there is a reason for all things...it's just hard to imagine what good is going to come out of this. She has been a trooper; but everything is so uncertain. She had a bad stomachache tonight...is it the meds? something she ate? a flare or continued Crohn's issue from before? And there's no way to tell which it is. I feel your frustration in all of this! I really want to check out a holistic treatment plan, but I don't know where to turn to first. We are meeting w/ our new Ped. GI doc in 2 weeks. Our original Gi doc seems to know her stuff, but has no bedside manner or appropriate responses for a 9 year old girl! Hopefully, our new doc will be the total package, w/the comfort level included.
Has anyone who's reading this tried holistic treatment for Crohn's? Help! Best of luck to you and your daughter. I will keep her in my prayers as well.

In answer to your question, my Daughter is now 19yrs. old. She was hospitalized once for a severe crohn's complication. The disease was not being controlled properly in the first couple of years, as she was only taking Pentasa.

Most GI's now feel that Pentasa is a useless medication. For the last 3 years, she's been taking Imuran. She has tolerated Imuran very well, and with no apparent side effects.

Unfortunately, her last scope is showing disease activity, and we're now faced with the liklihood of moving on the Remicade or Humira.

Monte I'll keep your daughter and all of you/your kids in my prayers too. Again, I'm so glad to have found you!

Hi Datawraith:

I hope it didn't sound like I was mounting a campaign against the use of Pentasa and other 5-ASA's. I know that there's numerous people here that use those meds exclusively. The statement I made about Pentasa being a useless medication, is coming to me from our own GI clinic, and our personal GI. There are numerous GI's at the clinic we attend, and they will not prescribe Pentasa to anyone any longer. In fact, for the last couple of years. In fact our GI compared Pentasa to sugar pills.

I can only guess that this consensus comes from some sort of recent research, but I don't have that to pass on.

It does seem that the study you posted is contradictory to what I'm being told.

I can only say that from personal experience Pentasa didn't work for my Daughter. But of course we know that, that can go for any medication per individual.

SOME GIs won't prescribe it. I would never choose Pentasa as my first line med to induce remission, but it did work well at keeping me pretty good shape for a long time.

Hi CarolinAlaska,
Welcome to the forum, but I'm sorry you have to be here. I have had crohn's for over ten years now, and I can't imagine if one of my kids get it!

You must be having a lot of things going through your head--worries about her present and future. You mentioned the Creator--remember to lean on Him.

Now that you are reading about diet, medication, risks, and benefits, don't get overwhelmed. Put the books/computer down if it gets to be too much! The material will be there tomorrow to read. Also, don't freak out too much when you look at the risks/benefits of the medications. Right now, the main concern is to get your daughter out of the flare and start to thrive. Once she is in remission, her body should catch up. You want to make sure she is getting all the nutrition and developing properly so she can build a good foundation for a healthy adult life. One way to do that is with strong meds. If that is what the doctor prescribes, I encourage you to go with it.

And just to give you a little hope--I have had two children and traveled the world (currently live in Korea) all with crohn's and on all the different types of meds. I've had my ups and downs with this disease, but I'm able to LIVE MY LIFE.

Thanks Old Mike and everyone.