Marilena's story

[Mami]

I posted this on the regular forum and thought I would put it on the sub-forum as well, just in case. I've already found help from helpful people in a few short hours. THANKS!

Well, my newly 10 year old daughter was just diagnosed last week with Crohn's. She's always had "tummy" issues, which her doc said was anxiety... she is an anxious child and then her BFF died of a brain tumor a little over a year ago, so it made sense. About 6 months ago, she started with lots of diarrhea and gas. I noticed she wasn't gaining weight and then in the last couple of months saw that she was looking boney. I will kick myself for the rest of my life for not checking into her symptoms 6 months ago. Well a month ago, I took her to her pediatrician who said something was not right. Blood test showed elevated SED level, she feared Crohn's and within a week she had gotten us into a specialist (which I think is a miracle from the sounds of things). The ped GI agreed to forego an initial meeting to speed things up and we met at the hospital last week for my daughter's first colonscopy. SO hard to starve a malnourished child to get ready for the scope. Well, biopsy confirmed Crohns. The one med I was scared of was long term steroids... We are on day 8 of Pentasa and prednisone. I asked for Entocort, but GI said it wasn't as effective. Good news, this was the first day in months that she had a normal BM and no stomache pain.

I've been trying to give her info about Crohn's a little at a time to help her take it in. Every food she has ever liked is on the "no-no" list. I tried to prepare her gently for the side effects of the Pred that could happen so that she doesn't ever think we're keeping things from her and now she is pretty nervous about the weight gain/face swelling with the steroids, although I try to reassure her. Truthfully I don't know what it will be like or when it happens??? I could care less if she's 500 lbs but other kids can be pretty cruel. The insomnia seems to be getting better, but she now has reflux. She's on 30 mg of the Pred and the nurse said this is a low dose???

I know I should feel so relieved and yet I feel like I can't breathe, like her future just got taken away from her. It seems like everything I've read prior to this website is filled with surgeries, pain, and this feels like a raw deal for a kid! I can't wait to hear from some of you and to make some friends who are going through the same thing. I would love some knowledge! Jamie

 

[Dexky]

Very glad to meet you and Marilena, Jamie!! I hope you find as much comfort here as I have!!

 

[gypsigirl28]

Welcome to the forum... I am glad that they figured out what was wrong and that she is feeling some relief with the meds.

 

[Rebecca85]

Hi, I hope you are giving Marilena vitamin D and calcium supplements? These are important while she's on Pred to avoid bone problems later in life. 30mg of Pred is lower than the usual adult dose, I don't know how it compares to other kids. If you haven't already, check out our wiki www.crohnsforum.com/wiki/crohns-disease And if you look at the page with the Crohn's associations on, there is one specially for parents and kids.

 

[girlscout]

Hi, your story sounds a lot like ours. My son was diagnosed 4/22/10. He had just turned 10. He was always having tummy aches, and had gi problems even as an infant and lots of ear infections. I've been reading about how excessive antibiotic use in infants prevents them from developing normal gut microbia...I think he's a classic example. Probably the ear infections were related to undiagnosed food allergies, and then the antibiotics killed his gut flora. 10 years later, here we are.

After his dx, I also slowly gave him info on crohn's. It's a heavy load for a kid. He started on Pred (40mg) and eventually budesonide and 6-MP. As of August he had regained 10 lbs (back to his 9yo weight), but has not yet started to grow (now on 7.5 mg pred). In July I began researching alternative (diet based) treatments. He's tested allergic to Almond, amaranth, corn, cows milk, sesame, soy, tomato, yeast, chickpea and is probably gluten intollerant. (I'm also gluten intollerant.) Right now we are trying 1 month completely free of all these foods. Also he's got a candida issue, so he's taking something for that. Oh, and he has a lot of mold allergies, too, but most are airborn.

I hope that you find comfort in reading the material on this forum. Don't be discouraged when you hear about people w/ difficult cases. Everyone is different. Keep a positive attitude, I think it's really important for your child's sake (but I have to admit, it's not easy!)

 

[tannersmom]

Hello!!! I know exactly how you feel, but hang in there. My son is 11 and was diagnosed with Crohn's at 7. We have done just about all of the meds out there. Pred is tough and I can only imagine tougher for a girl. My son was teased and picked on, luckily he would talk to me, so just keep good communication going with her because she is gonna need you alot. After my son had to have surgery last October and had to have an ilieostomy we decided it was for the best to take him out of the public school and put him in a small private Christian school. For him it was the best decision made.
Just keep in mind that everyone's case is different, some can get a handle on their Crohn's with the first meds they take others like my son seem to find no relief. I have never hid anything about this disease from my son even at such a young age. I hope the best for you and your daughter.