17 year old daughter diagnosed with Crohn's

[Callie]

Hello, everyone, my 17 yo daughter just got diagnosed with Crohn's this week. Her first symptom was 2 months ago and prior to that was perfectly healthy with an iron stomach, very active, no stomach issues whatsoever, never got sick, involved in a million things, working hard at college prep, happy. Not sure if I'm in the right thread here, but we are reeling. She has lost about 20 lbs in 2 months and is not dealing well with this. Any advice? I'm probably not dealing with it too well, either, as tears are flowing down my face right now..
~Callie

 

[LittleChloe]

I'm so sorry. I can honestly say I know how you feel. My 15 year old was just diagnosed in September and I was in complete denial. I couldn't stop crying for a long time and even now it really hurts. There is a wealth of information here for you and some awesome support. I'm very glad you found this forum, it's the best. What course of treatment have you decided on?

 

[Callie]

We haven't decided really. Nothing yet. The doctor wanted to go right to the terrorist drugs, but we wanted to do some research first. We are trying SCD but are only a few days into it, with lots of struggle and tears from an already picky eater, though she is agreeing to do it. Mostly she is hardly eating while trying to maintain a busy school schedule. Read about LDN so thinking of asking the doctor. Was willing to try the 5-ASA's but the doctor said it probably wouldn't work for her. She ordered carafate (since the Crohn's is also in her esophagus) but it is super super expensive, and also full of sugar which is contrary to SCD, so we passed on that. How is your daughter doing???

 

[LittleChloe]

She is doing very well. She had a 14 day hospital stay back in sept/oct and was diagnosed with moderate crohns. Our docs wanted her on 6mp and they even talked about remicade. We knew right away that wasn't the approach for us. Our GI let us have LDN and we started it as soon as we had tapered down on prednisone. We allowed prednisone because it was temporary. At her last checkup she had gained 9 pounds and her bloodwork was good. She does have a bad day here and there but I feel like it's usually because of either not enough sleep or what she's eaten. Shes not sticking to any particiular diet and so far she's getting away with it. I wish I could make her do the SCD but as long as she's feeling good she's just not motivated enough. We do take quite a large collection of supplements. There is a subforum on here completely dedicated to LDN and I've posted Chloe's story on there. There is a ton of information on there. I wish you the best, it does get better (a little).

 

[Crohn's Mom]

Hi Callie and welcome

I'm so sorry to hear about your sweet daughters diagnosis. It must be so scary for you to have such a thing happen out of the blue

Might I suggest that you may want to start your own thread here in the Parents section since you are new ? More people will see your story that way and you will get many more responses ~ and also find out just how many loving and caring parents there are here that would love to listen and give helpful advice when they can.
I would move your story that you've posted here for you but I don't have those powers that be ! LOL. Maybe our dear Dusty will come along and do it soon, just in case your not sure how to begin your own.

I hope to see you around the forum more and please feel free to ask away, and vent away, and cry if needed...we will cry with you and then send you virtual hugs. :kiss:

 

[DustyKat]

Hi Callie and :welcome:

No doubt you know I have moved your post! :lol: Please let me know if you would like the name of the thread changed.

I'm so sorry to hear about your daughter...:hug:

I so hope the LDN works for her and she is soon feeling on top of things again. Keep reading all you can and keep asking questions of us, the docs, anyone! Have a look at the Enteral Nutrition forum and the diet forums, if you haven't already done so...

http://www.crohnsforum.com/forumdisplay.php?f=161

http://www.crohnsforum.com/forumdisplay.php?f=17

Where is your daughters Crohn's located?

Has she had blood levels done for B12, Iron Stores, Folate and Vitamin D?

Good luck, welcome aboard and keep us posted!

Dusty. xxx

 

[Callie]

Thanks, everyone! I called the doctor today to ask about LDN. Haven't heard back. Her Crohn's is in 3 places that we know of: her esophagus, ileum, and 1st third of colon. I don't think they did all those blood levels, but did tell her to take Vit D. Said she is anemic but iron wouldn't help. I will ask for copies of her lab work. So far she is not having a lot of diarrhea, but is having a lot of pain/discomfort, constipation at times, massive burping, no appetite, extreme fatigue. It is amazing what you've all been through! I think today it really hit me how serious this is and how this could change her life. She is an amazing singer and dancer preparing for the extremely competetive world of musical theater, a kid with no time ever because of all the things she's involved in. She is already scheduled for 2 summer theater programs, plus a school trip next month to the National High School Dance Festival in Philly. I fear she won't be able to do any of this. I think she is in a lot of denial, plus she loves to eat (or she used to) so is finding any restrictions depressing. What's so frustrating is that it seems everyone's path is different, no directions that say "go this way" so I'm feeling helpless when all I want to do as a mom is FIX THIS. Thanks for all your support <3

 

[DustyKat]

Okay, since she has ileal involvement I would get the blood levels done for B12, Iron Stores, Folate and Vitamin D. I know she is already taking Vit D but it would be good to know where she is staring from. What sort of Vit D is she taking, D2 or D3?

She may have some narrowing going on in the small bowel and that is what is causing the pain, constipation and burping.

:hang: Mum! It is very difficult and heartbreaking at the outset but it will get better. :hug:

Dusty. :heart:

 

[Dexky]

Hi Callie, welcome! I'm sorry you've found the need to look for this site but glad you found it nevertheless. I hope you get her flying right again soon. Good luck!

 

[controlfreak]

my daughter has had a barium x ray and the GI believes she has crohns - having a scope and biopsy next week to confirm ... feeling so overwhelmed - just found this forum and I am already learning so much from all you have shared - thank you

 

[hearts2mend]

Hi Callie, looks like you found the right place. I too am new to this group as my 17 year old son has recently been diagnosed with Crohn's. There is a wealth of info and support here that I am still going through. It looks like there are many new parents to Crohn's who just want to help their kids and I think we can all learn and get through this together

 

[maria]

I'm sorry and I hope everything goes as smooth as possible.

 

[Tesscorm]

Hi Callie,

I just wanted to welcome you to the forum as well although I'm sorry it was your daughter's illness that brought you here.

We can all certainly understand how heartbreaking it is to hear the news that your child is sick and takes a bit of time to make that adjustment, both for our children and us.

My son was diagnosed in May, just before turning 17. His treatment was Enteral Nutrition and, at a lower dosage, this has also been his maintenance treatment since then. He is also a picky eater and, while the treatment is by no means easy at the beginning, I know that, for him, it was preferable to having to change his diet. Rather than repeating his whole story here, I have written about his experience with EN in the EN subforum as well as in the EN thread in this subforum. However, if you have any questions, please feel free to ask. I'll be happy to share my son's experience and there are a number of other members who have also tried EN as a treatment option.

You will find much support and knowledge here and, eventually, things will get a bit easier. :ghug:

 

[ChampsMom]

Hey Callie,

So, so sorry that you've found yourself here - but rest assure, you have found some of the best most compassionate, understanding (I mean *really* understanding, not someone noddin their head at you completely having no idea what you're going through..) group of parents...

My son was diagnosed almost 2 years ago at the age of 13. One thing I've seen over and over again is *many* of our kids are over achievers. I actually had one tech ask me during my son's sono if he was a "type a" personality - as many of the kids he saw with Crohn's were "Type A".

You're in my prayers Mom... learn as much as you can about what your daughter's issues are and then look for the best meds for her. I am really against the "terrorist" drugs, and have been fortunate not to have to go there (though the doctor recommended some). However, for other families it was either the hard stuff or *really* sick and potentially horrific problems. The right answer will become clear as you go forth. If something does work, don't be afraid to say something. You'll be your daughters BEST advocate and likely know more than her doctors about what's happening when it's happening (you'll be there...)

Take care - ask LOTS and LOTS of questions!!

Shell

 

[kimmidwife]

Hi Callie,
I just wanted to say welcome. We have tried a lot of different therapies and are now trying LDN. We are 3 weeks into it. I will keep everyone posted as to how it goes. I know how overwhelming all this can be. Just wanted to say we are here for you!

 

[izzi'smom]

Just saying hi...I am sorry that you found yourself here but it is a wonderful forum! Hoping that your daughters weight will stabilize soon so that you feel you have more time to research what therapy will work best for you and your daughter. I found that deciding the course of action is the hardest part. Best of luck!

 

[kjhngisd]

Hi Callie.
I don't have any wise words, just wanted to say that i feel your (and your daughter's) pain. I can't imagine being diagnosed that young. Going through teen years with Crohn's must be terrible.
But, you and she are hardly alone. There are lots of people in the same place. There are a lot of good support groups who can help , both online and off. Education and management of Crohn's is half the battle, so being around others who are trying to manage is helpful.
And there are a lot of Crohn's sufferers who live long, happy productive lives, so there's a lot of reason to be hopeful.
Hoping for the best,
--kevin

 

[Callie]

You are all so kind <3. Controlfreak, I love your name because my husband says I am too much of one :/ Anyway, we just got permission today from her doctor to try LDN. The doctor said she hasn't had much luck using it with other patients (who only stayed on it for a few months), but also said, "Why not? It's safe." So I'm researching pharmacies. She is also doing SCD so between the two I hope we get some results. Kimmidwife, please keep us posted on Caitlyn. I have learned so much here and sooooo appreciate the advise and support. Thank you!

 

[Alanschachter]

LDN has a much better chance of working if you eliminate wheat, casein and soy. All 3 may actually compete for opioid receptors. And it is a good idea to focus on vitamin D levels. Most with crohns need to supplement with high doses of D3 (5,000 or 10,000 ius/day) to get up to target levels of 60 - 80. It won't cure the disease, but it is part of the puzzle and its an easy part.

www.crohnsdad.com

 

[kimmidwife]

Callie,
I recommend asking your doctor to put her on entocort to get the symptoms under control while the LDN kicks in as it takes some time from what I am reading. We had Caitlyn on Enocort for 1 month prior to the LDN and now she has been on the LDN 3 weeks and we are weaning the entocort. SHe is going down to 1 pill daily this week. In case you don't know Entocort is a type of steroid that has much fewer side effects then prednisone because it mainly works in the gut and is not well absorbed by the rest of the body. It has local effect. (meaning you swallow it so it goes through the gut and that is where it stays).We started Caitlyn on 3 pills a day for 3 weeks then 2 per day for 2 weeks then we will do 1 per day for 2 weeks and see how it goes. I am keeping my fingers crossed. SHe seems to be doing well.

 

[LilyRose]

Hello,

Just to say 'Welcome'. I am sorry that your daughter has to go through this. I know it would be such a shock to be faced with. Especially since your daughter has always been so well. I think it takes quite a while to get over the shock and the distress. There is a post somewhere that talks about grieving when your child is diagnosed with a serious condition.

But, as others have said, be hopeful. There are many, many people getting on and enjoying their life and managing their crohns.

Take good care of yourself. And best wishes for your daughter.

Let us know how she goes with the LDN.

Cheers,
LilyRose

 

[PennyLou]

i too have the narrowing of the small intestine and thicking of the walls so i to deal with constant cramping pain and constipation i was on narcos but my new doctor took me off them and put me on flexerall muscle relaxer and it seems to control the cramping pain for the most part and it kinda alows me to function more throughout the day and is not addicting like narcos are just a thought for u to check into i also take pentassa but am convenced its not working for me but i would make shure to find a gi doc that is experienced with crohns i have been with the same doctor for almost a year and am in the process of changing to a more experienced and mayo trained doctor so that is the key in my opion good luck to you and your daughter

 

[Callie]

Thank you all, they did give my daughter Tramadol in the ER and she thought it helped, but the doctor said it probably just relaxed her. Flexeril is so sedating and dries you up that I worry about trying that now while she is eating/drinking so little. At this point we take one day at a time.... :/

 

[dannysmom]

Hi Callie -
Just wanted to welcome you. At the direction of an alternative MD, we tried both SCD and LDN with my son ~2 years ago, but they did not help him. (In less than one year we spent more than $3000 on alternative treatments/supplements - none which seemed to help) SCD is hard for picky eaters .. my son managed for 5 weeks without any improvement so we stopped. (My daughter and I loved the muffins made from almond flour though- the recipe is in the Breaking the Viscious Cycle book) Good luck!!