My daughter's story:newly diagnosed

Crohn's Disease Forum

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Mami

Joined
Oct 21, 2010
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Hi everyone,
I just found this site and am feeling a little technically overwhelmed. I've never done a forum and am not sure how to navigate, but I'll get there, because I would love the support from survivors and and other parents of IBD kids!
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
 
I'm sorry for you and your daughter. Children should never have to endure things such as Crohn's. You have come to the right place though. There are many well informed empathetic people here and you will find lot's of quality support. Be strong and don't kick yourself too hard but I know how you feel. My daughters appendix burst on her cause we weren't paying attention. Please don't beat yourself up it won't help.

Welcome and Good Luck.
 
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Hi Jamie and :welcome:

I'm glad you found your way here but sorry that another parent has to find this forum because their child has IBD. Having said that this is a wonderful place for support and info and you are a most welcome addition.

I know, believe me, about the if only's and the 20/20 vision in hindsight but let's face it, it's not like we are looking at our children and saying "Hmmmm I wonder if this is Crohns, well it could be but nah I don't think I need to worry about that". It's easy to see after the fact the pieces of the puzzle come together. We do our best at the time and never expect the doctor to say to us "Your child has Crohns and there is no cure". It's like running into a brick wall. Your daughter had many things going on at the time not the least being an overwhelmingly tragic event in her life and it's not hard to put symptoms down to something else.......heck the doc never suspected it either.

My daughter has never been on Pred but there are others here whose children have and I'm sure they will be along to tell their experiences. There is a Parents Subforum you might like to browse through..........

http://www.crohnsforum.com/forumdisplay.php?f=49&order=desc

There are positive stories out there! My daughter has had surgery but the main reason was she went undiagnosed for so long that her bowel perforated and she required emergency surgery, she was diagnosed in theatre. This was 4 years ago and she has been in remission since that time and is currently living life to the full away at university.

Please stay around and if you have questions don't hesitate to ask. Good luck and welcome aboard!
 
She's on 30 mg of the Pred and the nurse said this is a low dose???
Click to expand...

Generally the dosages of medication for children are calculated on the child's weight. This is not high for an adult but may well be more than sufficient for your daughter. Don't quote me on this but I think the general rule of thumb for Prednisone is 1mg per kilo.

Dusty. :)
 
Welcome Jamie!! You came to this forum for the same reason I did!! My son was also dxed at ten. He had always had what we thought was just a "sensitive" stomach. There was blood with his diarrhea or the ped. wouldn't have been so quick to refer us to a GI either. They just don't make the leap to crohns very fast. I think EJ's pred taper started at 50mg and we were reassured that was a low dose at the time. It did the same for him though, solid bowel movements and weight gain. He has been relatively well since coming off pred I think in late Jan. this year.

EJ's maintenance meds are Asacal and 6mp. Has your GI mentioned what meds he'd like to try for your daughter after the pred taper? I hope you stick around!! It has helped me a great deal. Good luck!!
 
Welcome to the forum Jamie. So sorry to hear of another young child with crohn's. It doesn't matter that you didn't get it caught 6mos ago, what matters is that you found out and now she is not suffering so much. There are others here with children who have crohn's and I think you get some great advice from them. Wishing your daughter only the best. Don't beat yourself up over this sounds like your a wonderful caring mother. Hang in there and hope you stay around and keep us updated. All the best.
 
Thank you everyone for welcoming me! I feel like I'm not so alone anymore.
Mark, we are on Pentasa and have been waiting for lab results to get started on a 6 mp (don't remember name). Was your son's weight gain a lot and fast? and did it go away after Pred was stopped? My daughter is nervous about this and I don't know enough to be able to tell her anything...
 
Check out the parent's sub forum Mami like DustyKat posted. I hope your daughter goes into a nice long remission. And welcome!
 
My son who is an adult, 27 yrs old, was diagnosed a few weeks ago and was put on 30mg of pred like your daughter. He had lost 35lbs prior to the diagnoses and since being on it has only regained about 10lbs. He doesn't have any puffy face issues either. If you daughter is only on it for a short time, and tapering each week, you might not see any face swelling at all. And like most Crohn patients, a 10lb weight gain isn't a bad thing at all.
He is on week three now and down to 15mg and will keep tapering off. He started remicade infusions yesterday and did fine with it. He is going to start imuran when the pred is done. I have gotten lots of good reading here, not too much input though. So I thought I would reply to you. Good luck in your journey.
 
Jamie,

Hi! I am pretty new here also as my 9yr old son was diagnosed in August with crohn's. Don't feel bad that you didn't "catch" it sooner! I was beating myself over it also but have since decided to put the energy into learning what I can do for my son! As parents, that is our first reaction, "how did I not know or see it sooner".

My son was put on Apriso and pred 30mg. The pred was definetly a concern for me also. My son had lost 10lbs in a month before being diagnosed. Once he started the pred, he gained it back FAST! He was always hungry! I would try to keep healthy snacks on hand. I made sure to tell him that he could not use the pred as an excuse to eat. He puffed up some, but he has always been a short and stocky kid. When placed on the 30mg, he weighed 68lbs. Just let her know that it is not permenant! Since Harley has come off the pred, he has lost some weight, but he is definelty healthy!

I know the 30mg seems high, but they should start tappering off of it. I kept a close eye on Harley and once I could tell he was feeling better, I started talking to the dr with tapering it off. From the beginning Harley wasn't acting "hyper" but once he started feeling better, he was constantly tapping fingers, moving, and talking. Not just his regular talking but ALWAYS talking and inserting comments. The dr agreed with me it was time to taper. I can't remember the exact time frame, but he was not on the 30mg terribly long before they took him down to 20mg. Once he hit the 20mg, it was maybe 2 weeks before they took him down to 10mg and then 5mg. I was told that they don't want to tapper to soon because he would have to go full force again if he wasn't healing.

Did they give your daughter a diet to follow? We were told to do a well balanced diet and avoid foods that give him problems. It was extremely frusterating at first, but we are finding what works. He has "lost"some of his favorite foods, but when he splurges and feels horrible after, he is learning what he should or shouldn't eat, and finding alternatives. Keep your daughter in the food game plan letting her voice her opinions and thoughts about changes.

Sorry this is so long! You have found a great place here!

Jessica
 
HI Mami - I am so sorry to hear that your daughter was dx with Crohn's - although the IBDs are life changing, she will learn to cope with it. I know that's not reassuring, but many people live with it and it can be managed - it's just getting to the point where it's managed! It's true there are lots of peeps on here living with pain and all the dreaded effects of Crohn's, but I was dx with UC when I was about 13-14 after several years of problems, and I was lucky - when I was in remission, the drs couldn't even find the UC on the scopes, etc. I lived that way for many years with a flare up a couple of times a year. So, please don't despair - your daughter needs your reassurance right now - it's tough to be a sick kid. I can remember I just wanted my mom to hold me and let me cry! Hopefully, they will get it under control soon - you are not alone. Not sure which is harder - being the sick kid or the scared to death mom! Glad you found us...
 
thanks guys! Esp Jessica for the specifics. The doc just started us on the pred and said she'd call in a week to set up an appt for next month...so I feel like I'm floundering on the specifics with meds, when i asked the nurse, she said they'd probably start to taper after 6 weeks with a total time of pred of 3-4 months... which seemed SO long to me. We don't mind weight gain, cuz she needs it, but doc didn't tell us so I'm trying to figure if its going to be 10 or 40 lbs... thanks again for specifics. She had first pain free day yesterday at day 8 of meds...woohoo! Can anyone tell me specifically what "aggressive" could look like? I've read that a lot about how kids react to pred.
 
I know it is so very frustrating, it just recently that I have started feeling less frustrated. Like you will hear, no to crohn's patients are the same so everyone can offer suggestions but no definet answers. It truly is a trial and error type thing it seems. Try something to see what works.

Do you mean aggresive as in behavior on pred? Harley never got really aggresive on it. His temper was quick to rise, but we worked through that. When I think of aggresion I would think physical, but that is just me.

I talk to Harley very often about crohn's and when I learn somethng new, I explain it to him. He knows of worse case scenarios because I feel that helps to know that it is serious and he needs to learn how to take care of himself. I talk to him before and after talking to the dr so he knows exactly what is being said and done.

Jessica
 
Hi Jamie
and welcome

Try not to fret too much about the Pred, the benefits far outweigh the side effects!
I was on it for nearly 6 months, gained maybe 6lbs, and slight moon face, when I stopped it all fell away! I'm on it again now and hardly noticed any moon face. This med saved my life. The manufacturers of drugs have to list side effects on their leaflets to cover themselves, and if you read it, it says may or might. I've never had any mood swings, aggressiveness or mania, I didn't get many side effects. I did get insomnia tho! And I got tons of wizzy, speedy energy! To combat this I took my Pred about 6am and the effects wore off before bedtime. I believe 3-4 months would be sufficient to help heal her inflammation. Of course, I can't comment on how it might affect your daughter, only how it affected me.
Glad you found us, lots of support here, any questions, just fire away!
Lotsa luv
Joan xxx
 
she takes her pred at around 6:30-7:00 am too, so hopefully that will help her. Haven't noticed high energy yet, just insomnia and reflux. I don't care about the weight gain either, but it kept sounding like it could be TONS of weight. I'm glad that doesn't sound like the case, cuz it seems to be helping her and I'm just super sensitive right now to how kids might treat her or react to her... she doesn't want anyone at school to know except her best friends.
I've been trying to tell her as much as possible about Crohns, but I feel like she is sick of me talking about it. I need to do a better job of figuring out what to say when. Thanks again everyone!

I meet on Monday with school principal, counselor, and teachers. Any advice on what I need to do other than educate them the best I can?
 
Be blunt and straight to the point! :lol:

Just from my own experience, I did the usual thing of providing literature to the school about Crohns and spoke with the the teachers about Roo and they indicated to me they understood BUT they didn't. I realised this after a couple years when the same issues were being raised at parent/teacher interviews. I thought - "Hey, I've told them about her issues with Crohns so what don't they understand". After that I arranged another meeting with the principal, teachers and counsellor and explained that I had prepared a report and I would like to make a presentation and would like time for questions (from both sides) at the end. In our case this is what it took for them to really have some sort of understanding of what my daughter was dealing with everyday of her life. The same teachers that said from the outset that they understood had looks of amazement and disbelief on their faces. I'm not bagging out the teachers here but just trying to stress that in my experience that unless you are very specific it just becomes generic and doesn't translate as THIS is happening to my child.

Of course your situation may be quite different in which case ignore my ramble! :lol:. I provided a copy of the report for each attendee. It is primarily in point form and I just expanded on each one as I spoke. I still have it on file and if you think you would like a copy for ideas just PM me.

Dusty. :)
 
Mami said:
Thank you everyone for welcoming me! I feel like I'm not so alone anymore.
Mark, we are on Pentasa and have been waiting for lab results to get started on a 6 mp (don't remember name). Was your son's weight gain a lot and fast? and did it go away after Pred was stopped? My daughter is nervous about this and I don't know enough to be able to tell her anything...
Click to expand...

Jamie, EJ's weight gain was probably noticeable by about week 3 on the pred. I think I am wrong about his starting dose of pred. I just don't remember but his entire taper was only about 9 weeks. His weight quickly came back to normal because after the pred he returned to his normal active self. He had previously had virtually no energy during his 3 month flare that led to his dx.

It sounds like your girl is also going to be on Mercaptopurine(6mp). I'm sure your GI tested her to make sure her body metabolizes this drug sufficiently. It's called a prometheus blood test or something like that. I think there is a Wiki article about it in our Forum Wiki. The GI will keep a close eye on her when she starts this drug to make sure it is only doing the things it's supposed to. EJ has had no troubling side effects from it.

EJ will be moving to middle school next year so all new teachers that don't yet know him so I am learning from that aspect of your thread also. I'm especially interested in Dusty's presentation material!! Wink, wink, nod, nod!!!!

Thanks for the links Cat!!
 
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Mark and Dusty: yes Mark the med sounds right for the 6 mp, the blood had to be sent to California (we're in Michigan) to make sure she can metabolize it. I haven't even looked into side effects on that one:) J

Dusty, about school, what kind of things were they not understanding? I'd love the presentation... I don't know what a PM is, but I'd be happy to do it to get the info.

And thanks everyone for the help...at this point I've made copies of the ccfa brochures that are specifically for school personnel and highlighted the areas that pertain to Marilena.
 
Mami, go click on Dusty's user name and it will give you a list of options. One is send private message. That's PM!! Like this....

Do you see at the top right of your screen Private Messages? It should say 1 and link you to your inbox.
 
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Gee that's subtle Dex. :tongue:

@ Jamie, They just didn't fully understand the extent of the impact that it had on her life. In her case the fatigue that would account for her lack of attention in class, her attitude at times, the times when she may not do as well as they expected, those type of things. I have always had a very good relationship with the school and I really thought the talks I had with them had them understanding but it wasn't until I put it in writing and really laid it on the line that I think it actually dawned on them the consequences of her disease.

I will PM the report to you both. As I said this was the outline of my presentation. I basically started out the meeting explaining why I felt it necessary to bring them all together and then went through my report, expanding and giving examples as I went and finally had an open question and answer session at the end. When I arranged the meeting I told the principal what I was doing and he had no issues with it. It went well and I think allowed everyone to be on the same wavelength. I have found over time when dealing with the school it is better to have less meetings but when you do, have everyone present. There is much less room for emotion and miscommunication that way.

Dusty. :)
 
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So sorry about your kid. Please, never feel guilty about the past. Guilt makes parents sicker and your daughter needs a healthy, supportive mother. Try starting her on gluten free diet.
 

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