Newly diagnosed

[kodles]

Hi there! My name is Lori, and my daughter, Sadie (6) was just diagnosed with Crohn's about 2 weeks ago. The diagnosis was almost a relief, as at least it wasn't something much, much worse, which as a parent you fear the most. We've started the prednisone, cipro and metro for now and we're waiting to start the Remicade. I'm really just looking for people to talk to, I feel like this has started to become all I think about and of course while friends are happy to listen, they are not in the same situation and so no real advice or support. I'm sure they're all just happy it's not their child I have no idea where to go from here, or how to help her.....her mental state right now is not good...she lives in fear of the bathroom and it becomes all encompassing when she has to go. I don't know how to get her over this fear. Should I look into having someone for her to talk to?? How does everyone else deal with this?? Is there any special diets I should be doing? Dr said that diet doesn't matter.....seems a bit odd to me. Any help at all would be appreciated! Thanks so much!

 

[Clash]

Welcome to the forum, kodles. I'm sorry you find a reason to be here but you will find that there are many compassionate, caring, knowledgeable members that can provide a wealth of info, a shoulder to cry on, a hug, a sounding board and comedy relief.

There are several members with kids around your daughter's age and I am sure they will be along shortly to introduce themselves.

My son was diagnosed at 15 and went straight to Remicade, we later added methotrexate to the mix. There are different diets that members here have tried with varying measures of success. Check out the Diet, Fitness and Supplements forum(<--click here) to find threads about the different diets.

 

[ChampsMom]

Hello Kodles...

So sorry to hear about your daughter... My son was diagnosed 3 years ago at the age of 13... It took me several months to find this forum, but it was (and continues to be) a life changing experience.

My son is on different meds, so I do not have much to offer there (outside of a listening ear, open heart and virtual hugs!!) :ghug:

Regarding your question on having someone for your daughter to talk to... I think it really is an individual decision. My son is very open about his disease with his friends and has received a ton of support through his sport programs and church activities. However, I still felt he needed someone who could help guide him through this - hence he sees a therapist once a week. It has truly been a great experience for him and a huge help for me (especially when he started missing meds - she could get on him with better results than me!)...

As for diets - again very individualized. They say that "food cannot cause a flare". However, when my son was diagnosed our GI gave a list of "Foods you should never eat again" - and we've stuck by it - though there are folks on the Forum that eat some of the foods with no issues... :confused2: Alas, we stick to what has worked for my son...

Ask questions, and read, read, read... There are MANY brilliant and experienced folks here ready to lend an ear (and then some "huggers" like me - smile...)

 

[Brian'sMom]

Welcome! There's a lot of us to talk to here And its so nice to talk to someone who knows exactly how you are feeling. My son was around 6 when he first was feeling bad. I found that once the kids get on meds that make them feel good and the bathroom trips aren't a worry they just move on to living and it's us- mom's and dad's- that need someone to talk to! Hope your daughter gets to feeling good soon.

 

[CarolinAlaska]

Hi Lori, I'm sorry your daughter is having such a rough time right now. A therapist might be helpful, but I've not had any experience. I think the biggest help is to get her flare under control.

As for diet, I agree and disagree with your doc. I agree that diet alone is not likely to bring the long-term remission your daugher needs, but I disagree that diet doesn't help. My daughter would be much worse off if she ate gluten (we learned that many years prior to her crohn's diagnosis) although she isn't celiac, and certain foods make things worse. A food journal helps us to figure that out tool.

 

[Sascot]

Hi and welcome. I would think it might be beneficial to get a therapist for her to talk to, we usually would ask our IBD nurse and she would give us a name or get someone to phone us whenever we have issues.
Diet is such a difficult area. Our docs also say diet makes no difference but my son did the 8 weeks exclusive EN which healed his stomach so obviously what you ingest does make a difference.
I try not to limit my son too much - feel he has enough to worry about. In general I cook all vegetables, peel all fruit (the grapes are a pain :smile and he avoids popcorn, corn and seeds/nuts.
Good luck!

 

[Farmwife]

Hi and welcome.
Sorry to hear about your girl. My girl is four. I know the relief of knowing and the the heart aches of seeing them in pain. I hope she gets better soon.

 

[jmckinley]

Lori, I am so sorry that you and your daughter are having to deal with this. Glad you found the forum though, it's a great resource and support system. Dx is overwhelming and relieving at the same time. Take some time to let it soak in and do some reading. You are not alone in feeling overwhelmed. My son has been dx'd for 4 years, and while we have found a new normal, there are those days :ybatty:!!! If there is a CCFA support group close, maybe you could find someone for your daughter to talk to. Once her treatment has her feeling better, hopefully she will feel better. But someone to talk to may be good. Does the GI have a counselor? There is also Camp Oasis where she can spend some time with other kids who have IBD.

As for food, best thing is to start a food diary so that if she has symptoms you can look back at what she ate. Do some reading on inflammatory foods...and of course there are lots of different diets out there, but they don't work for everyone.

Welcome to the forum and lots of hugs being sent your way!!!

 

[kodles]

Thanks everyone!! I think I will look into finding her someone to talk to....I don't think I'm the best one as my patience isn't my best quality! :/

I'm so glad that I found this forum....I do find that it's more me that needs the support! My husband and I deal with this very differently, so he's little help. He keeps telling me I worry too much (is that even possible?!?!).

Anyways, thanks again....keep you posted!

 

[Clash]

I do understand about the difference between the way the husband handles it and the way I do. My Hubby is my son's stepdad but you would never know it. C was diagnosed after my Hubby and I got married.

My Hubby has two nieces(sisters) that have CD one has refractory CD and has never been in remission the other is in and out of remission. Both have now been through all of the available meds. My Hubs is close to his nieces and has been through all the hospital visits, surgeries, med changes that they have dealt with. Until I met him I didn't know what CD even was. He handles everything alot better than I do, he has been through it on a level I have not so each new things can send me spiraling but he is all passivity and stability and I'm freaking out like a mad woman! Ha

It does help to have someone to talk to who is aware of all that can come with having CD and his nieces will tell my son in a flash that one person's CD is not comparable to another's.

I hope her treatment brings relief quickly!!

 

[Tesscorm]

Hi Lori,

I'm so sorry your daughter was diagnosed!! But am glad you've found this forum. As you can see, there are lots of great parents and members here and lots of info!

I hope her treatment works and she's into remission very soon!!

And, yes, the forum is a great place to find others who understand!! As much as my friends are sympathetic, they do not understand. And my husband... well, he just doesn't stress the details! I suppose he counts on me to do that! :ybatty:

I'm sure you'll find lots of support here, lots of understanding and someone who will have dealt with whatever question you have!

:ghug:

 

[CrohnsKidMom]

Welcome to the forum, but sorry it's necessary. My 8 yr old son was just dx'd in March. The dx, tests, and all the poking and prodding was the worst part. My son was absolutely terrified of needles, but already he is handling his frequent bloodtests in stride. I'm sure things will improve with your daughter, but I'm also sure some professional counselling couldn't do any harm. The folks on this forum told me things will get better, and they have. So hang in there!

 

[Brian'sMom]

It has always seemed like my husband didn't worry like I do. Doesn't research the disease or the meds...but I've come to find out that he worries quietly. He leaves the digging and reaching out to others for support to me...but he copes the best way he can-quietly. I think that's worse, actually, so I feel bad for him. But I also think if we both were worrying our heads silly we'd be a mess for Brian. It has come to be a good balance.

 

[zagi256]

Hi, some doctors may put kids/teenagers on Modulen IBD. Which I took for 7 weeks, and it helped me a lot. You only drink liquid so your bowels get a little break from food. Best wishes!

 

[Dutch941]

Hi Lori. So sorry to hear about your daughter.....I know all too well how you are feeling and I think you hit the nail on the head when you stated that you were glad it was wasn't something much much worse. It's a balancing act off emotions because on one hand....it's plenty bad enough right? But certainly there are things people deal with that are worse and so it is important to realize that this diagnosis is not the worst it could be. In my case we learned my son had severe colitis and that was scary enough. So far were fortunate it's not crohns(knock on wood)...and like you said, we were thrilled it wasn't cancer or leukemia....but despite that relief it continues to be a real challenge and is nothing a kid should have to deal with. You will find a lot of emotional support here and in times of stress it helps to come here and talk with those who understand completely. Great great people here. It's also important to know things can and do get better. My son has been doing much better and his doctor is for the moment downgrading his original diagnosis and thinking it is not as severe....(insert sigh of relief). So, hang in there..your daughter needs you to be her anchor. Best of luck..hoping things settle down and get under control for you and your daughter.
Don

 

[Jmrogers4]

Welcome Kodles, I'm a little late and you have gotten some great advice. Yes talking to a counselor for you daughter is probably a good idea but these kids are so strong and I admire them, they have great strength and resiliance and I think it may have been harder on me then on my son. Don't get me wrong he certainly has his moments of why me? but for the most part he just goes on living his daily life and doing what he wants to do and accomplishes so many things. I also think it has made him so much more compassionate towards others.

 

[kodles]

Thanks everyone for all the kind words of support! I have a quick update....Sadie was finally approved for the Remicade, so we're starting tomorrow!! Yay! I realize that every drug has good and bad, but, we're hopeful that this will finally get/keep her in remission. I have set up an appointment for her with a psychologist the IBD nurse recommended...just so she has someone impartial to talk to her and help her through it, we start that next week. In the meantime, I've done some food sensitivity testing, apparently lactose is not her friend, so switching to lactose free and hoping that helps out a bit. Thanks again to all of you...and very best wishes to all that you are dealing with as well. It's terrible that any child needs to deal with this, but it sounds to me like these kids are pretty lucky to have incredible parents that care so much to make them better and make their childhood, a childhood, and not a medical procedure! Hugs to all!!

 

[Brian'sMom]

Kodles, Once the biologic gets her in remission and healing begins in her intestine she may be able to tolerate lactose again. That happened with us. Lactose intolerant while flaring badly. Once we started Remicade then on to Humira - 6 mos to year later they said to try lactose again. He was ok. Just to keep in mind...
Good luck with the Remicade and remission!!!