Frustrated father

[ewalls28]

So, my 17YO daughter has been dealing with crohns for about 2+ years now. She was put on Lialda and was good at taking the med for about 6 months only to learn that she had not been taking it while at her mothers (divorced so she splits time between) I thought perhaps it was the sheer size of the pill and that she had to take 4 of them, so off to the dr to ask for a new med. Much to my chagrin the dr told me that nearly all teens have this stigma with taking meds. They just dont and switching her would only make a new med that she wouldnt take and to allow her to deal with the symptoms and she would eventually come around. So we waited, and low and behold, she started taking the Lialda again on her own, a few weeks ago. Well, now she's having a really bad flare up and the dr RX'd prednisone. And of course she does not want to take it. Its like pulling teeth to get her to do so. I understand all the negative impacts of a steroid, however, if its something that will help you get through the flare up, why not take it? I simply don't understand the mentality to resist taking meds and probably never will. I am pretty sure others have gone through this and perhaps im simply venting but would love to hear some sound advice should anyone be willing to offer up Thanks for listening either way.
Eric
Father of 17YO F with crohns, diagnosed 2 years ago, taking Lialda and her mother has UC

 

[Jmrogers4]

Sorry to hear that, but yep in some form or another I think all of us with teens have dealt with this. For what it's worth my son refuses to take prednisone as well and he told his GI as much he was 14 at the time. The GI gave him the option of prednisone or 8 weeks EEN with the stipulation if he didn't stick with the EEN he would have to take the prednisone without complaint.
He did stick with EEN even though he hated it but hates prednisone more. I think he stuck more with it because it was a decision he made with his doctor. I had a talk with him after that and we decided that he would get to make the decisions with his doctor but I had override power.
It was about the same time the decision was made to start remicade, Imuran wasn't really working. He had been resistant that he didn't want remicade or humira because of the infusion/needle but again after discussions with his doctor they decided to go the remicade route. His GI was fantastic gave him all his options, told him pros/cons of each, I gave him my advice and told him it sucked but unfortunately, he was the one with Crohn's and had to deal with it so he had to choose a medicine but which one was up to him.
One of the reasons he actually chose Remicade over Humira was because he didn't have to give it to himself so there would not be an issue with compliance only had to think about it once every 8 weeks (6 now). It's been nearly 4 years and he is away at college now and just had his first infusion there on Monday and they came to his dorm room so making it even easier to comply.
My suggestion if you are not already doing it, is to get her more involved in her care if you are not doing so already. It was truly a shock when my son told his doctor he wasn't doing prednisone so he would have to figure out something else and my kiddo is one that follows the rules and generally always does what somebody tells him.

It super hard when you see the big picture and they don't and why they need to continue to take the meds even if they are feeling great. I know that several parents kids have seen a psychologist to help them. tagging maya142, mylittlepenguin.

Good luck and welcome.

 

[ewalls28]

Thank you for the prompt and detailed feedback. My daughter seems to have that same stubbornness. I dont get it, as she has only been on prednsione once at the very beginning of her diagnosis, so its not like she's had a lot of experience with steroids. ( I honestly think she hears her mother complain about or lament steroids so much she just assumes the worst) In my opinion, its a few weeks of "ugh, steroids" which should make her feel wonderful at the end of the treatment(side effects of steroids not withstanding) She is of an age now where she is involved at the dr, however that is another story. The dr that diagnosed left the practice so we're basicly starting all over again and while i requested to see another gastro they stuck us with a PA. (again, im sure she's well qualified at her young age but an experienced gastro is what we really needed) Thats who RX'd the prednisone. If I may ask, what is EEN? I am a bit of a newb with the crohns acronyms. It took me forever to finally find this forum. A God send, truly. If I can give her an alternative it could help. Just need to get her through this flare, which seems like its lasting forever. (dont even get me started on trying to get her to stick to a crohns friendly diet).
Anyways, I appreciate the feedback tremendously!!
Eric
Father of 17YO F with crohns, diagnosed 2 years ago, taking Lialda and her mother has UC

 

[Jmrogers4]

EEN is Exclusive Enteral Nutrition basically they get all their nutrition from formula. Ensure/Boost are basic but you can get ones that are further broken down and easier to absorb. The idea being to give the intestines a break. We used Pediasure Peptide. Many have them done through an NG tube my son refused that and chose to drink them. He drank 8-9 a day and had nothing else but water for 8 weeks. It was hard! but it was the choice of that or prednisone. He was the same as your daughter the only previous experience with pred was at diagnosis at 10 years old but it must have made an impact on him because he was dead set against it. Studies have shown it can be as effective as pred in reducing inflammation.
We have not had any luck with diet either, it's either too hard to stick to or he won't eat enough of the allowed food and we deal with too much weight loss.
Another steriod to ask about would be Budesonide it is not supposed to be as systematic as prednisone so less of the prednisone side effects.
Is she only on Lialda? Usually mesalamines are not given as mono treatment for Crohn's in pediatric, they generally don't work as well to keep Crohn's under control as they generally work on top layer of inflammation which is good for UC but Crohn's inflammation can go through all layers of intestine.

 

[Optimistic]

Hi. I'm sorry to hear about your daughter. I have a teen boy who gives us some of the same fun about treatment. I think it is harder to be diagnosed as a teen because you remember life "before" so well and maybe the still developing frontal lobe can't quite grasp that this is the way things will be from now on and it is serious.

However, that is not my point of responding. When do you get in to see a GI? I see you are in Orlando. There must be plenty of ped GI with Crohn's experience? I will likely get flamed for saying this, but PA's are vital to our healthcare system and play many important roles. I respect them. However, you want to play long ball here. You want a very experience GI who is thinking about this in the big picture, can help you see all the options and guide you to a good decision. A PA might be a used when she gets into remission and needs a check in from a well thought out plan.

Best to you and your daughter!

 

[Chase]

Hello
I just wanted to share my view being that I was that kid taking the meds and am now that father trying to get my kid to do as they are told. And please do not take my opinion to heart. It is simply something to think about.

Our kids have their own lives to live. They are here through us, not for us. That being said it is important for them to make their own decisions and to learn from them. It helps them become confident in themselves. They learn from the failures and move on to the next lesson once they figure things out. As a parent all we can really do is support them and hope they make the right choice.
Now I am not saying be a absent parent and leave your kid to make uneducated actions. I am saying support and educate your child in their options and let them decide. Cause in the end they are the only ones that will actually follow through on what needs to be done. If we choose for them and things don't work out. Guess who is going to be blamed for the pain in their life.
Not to mention they won't start taking responsibility for their life, because someone else is doing that for them.

As a kid / young adult I tried every thing for Crohn's and depression. Diet, exercise, homeopath, acupuncture, Chinese medicine, prednisone, remicade, inmuran, ... and my favorite chicken bone broth for a month straight. But none of these thing were what I wanted to do. But once I finally started doing what I thought was the right I got better. Completely better on diet and stress control (remicade did help, sideffect not so much though) I am 2 year symptom free and nearly 1 yr off the meds.

But all this being said. We have to do what we have to do. And their are no wrong actions. The only wrong action is the one we don't take.
Best of luck to you and your daughter.

 

[my little penguin]

Ds was dx at age 7
And is now almost 14
Very adamant against pred
Unfortunately he has juvenile spondyloarthritis as well and no amount of een will fix that

We do let him chose as does his docs
He gets input on medical treatment but not final say
If he decides to not take a medicine then we require he contact his doctor and explain why he doesn't feel that xyz is necessary
Mostly he decides quickly that it far easier to take the med

It's about control
Having everyone else tell you what is going to happen to your body as a teenager and not giving that person any choice starts a lot of the problems

Highly recommended a therapist with medically complicated kid experience
Then it's someone safe to complain to and come up with plans with
Of doing xyz results on abc

Wishing you the best of luck

 

[ewalls28]

Thanks everyone. I do appreciate the feedback and tips.
To Jmrogers4, yes, Lialda is all she has been RX'd thus far. I was concerned to learn recently that its typically used for UC, not crohns. Her regular Dr up and left the practice without any heads up and we are now seemingly back to square one. We scheduled an appointment at the same practice however they scheduled us with the PA. I am tempted to reschedule and insist on a Gastro Dr. She is taking the Lialda at least. I will discuss with her the possibility to forgo prednisone if she's willing to try pedisure or something similar. I worry she then wouldnt get all the nutrition she needs. She dances competitively which I already feel she doesn't eat sufficiently to support such an active life. But I digress. The biggest thing seems to simply allow her to take charge of how she'll feel.

 

[Maya142]

I agree with Optimistic - you need to be seeing a GI with a lot of experience with Crohn's, not a PA. Can you get a second opinion?

Our GI always talks to my daughter and explains to her WHY it is important to do whatever thing she is asking M to do - use a feeding tube, take certain medications etc. She explains the risks and the benefits and the consequences of not doing whatever was ordered.

She does allow M input - M is 20 and she is old enough to make her own decisions. But she makes decisions WITH M, so that they come up with a plan that M will actually follow. Sometimes her GI will put her foot down and insist on a treatment and then M listens because she trusts her GI.

That's not to say she was always this easy - when she was 16-18 she was VERY stubborn and very difficult. She refused a feeding tube for so long that she got to the point where she was so underweight that they were afraid her organs would shut down.

Her GI absolutely insisted on the feeding tube, but M just refused. Unfortunately, because she was 18, there was nothing we could do to "make" her accept the tube. She had to learn the hard way - she got sicker and sicker and so exhausted she could barely leave her bed.

At some point her GI, psychologist and pediatrician FINALLY got through the her and she agreed to try the tube. Because it was her decision, she cooperated and dealt with it. She hated it, but understood it was necessary.

I would also recommend a psychologist - one that works with kids with chronic illnesses. Sometimes it helps to talk to someone who isn't mom and dad. And it will help her learn how to cope with the disease.

Teens are tough. Sometimes they have to make their own mistakes to learn. All we can do as parents is make sure they are well-informed of the risks and the benefits and well-informed about the consequences of their actions.

Good luck!

 

[crohner000]

Hi there,

I was 17 when I was diagnosed and I was really good with taking my meds for a while, but a few years later (probably around 19) I started getting really bad about skipping. I don't know why I did it. My main treatment was Remicade by infusion every 8 weeks, and I had no problem with scheduling that, but I eventually stopped taking all of the oral medication without telling anyone. I honestly to this day cannot explain exactly why I did it. I wasn't just forgetfulness, perhaps some of it was a desire to feel normal. It took me a year to tell my therapist, and then soon after my doctor, who said that if I am not having symptoms and I have been off for that long, I do not need those meds. Unfortunately it might just be an issue of both maturing and coming to terms with the disease. It is really emotionally difficult to accept day to day that you will be dealing with this for the rest of your life and it could get even worse.

On the topic of steroids, after my first round of prednisone I was TERRIFIED of being prescribed them again because I had the moonface symptom really bad, meaning my face swelled up and got really round and puffy. This can be detrimental to your confidence. ESPECIALLY being a young girl and already feeling like you have an embarrassing disease. I suffered really badly before I was willing to accept going on steroids again.

I'm not sure about advice, but just some insight that she is not alone in these feelings and issues! Wishing you both the best.

 

[ladyphoenix1010]

Ask your doctor about exclusive enteral nutrition. Complete remission for my daughter with no drugs, only Pediasure Peptide.

We have had huge success with this type of therapy. My daughter used a nasogastric tube to receive the feedings since it tastes pretty bad to her. She's only 11 but decided on her own that she wanted a Gastrostomy tube instead since we have committed to the therapy long term. We had this put in a week and a half ago and so far so great!

 

[DanceMom]

I have a competitive dancer that isn't fond of medicine either, lol. She takes a liquid medication that apparently doesn't taste so great and her infusions have started causing nasty side effects. After attending Camp Boggy Creek and making some great friends she realized she's not the only kid on the planet that has to take meds. That helped. Ultimately, it's her decision...but I remind her frequently that if she wants to succeed in dance she has to be healthy.

Not sure what hospital you use in Orlando but we love Nemours. We've been there since the year they opened.

 

[richard1353]

Ask your doctor about exclusive enteral nutrition. Complete remission for my daughter with no drugs, only Pediasure Peptide.

We have had huge success with this type of therapy. My daughter used a nasogastric tube to receive the feedings since it tastes pretty bad to her. She's only 11 but decided on her own that she wanted a Gastrostomy tube instead since we have committed to the therapy long term. We had this put in a week and a half ago and so far so great!

In my view, will your daughter take one week EEN and three week regular food without any medicines in one month? If that is right, I think it is a better way to deal with CD in remission than any other therapy!

 

[my little penguin]

Richard1353
Een needs to no food for more than 1 week
6-8 weeks for remission
And maintence can't be more than 10-20% solid food plus the rest formula

Not one week of formula
And three weeks of solid food
Doesn't work that way

 

[richard1353]

Richard1353
Een needs to no food for more than 1 week
6-8 weeks for remission
And maintence can't be more than 10-20% solid food plus the rest formula

Not one week of formula
And three weeks of solid food
Doesn't work that way

"The goal is to get her down to 1 week per month of feeding, and 3 weeks of food." are from ladyphoenix1010'post http://www.crohnsforum.com/showthread.php?p=989130#post989130
I am so sorry to misunderstand that!

 

[Maya142]

That is not a proven treatment - it can certainly be tried, but there are no studies that support that kind of tube feeding/EEN schedule as far as I'm aware.

Many GIs will continue supplemental EN to help with weight gain and growth, but generally exclusive enteral nutrition - whether it is 100% formula or 80% formula/20% food - is used to induce remission and maintenance meds are used to keep the disease in remission.

The maintenance meds used are usually immunomodulators - 6MP or Methotrexate or biologics (Remicade, Humira, Stelara, Entyvio) or a combination.

Mesalamine is not usually used as monotherapy for Crohn's. Some doctors say it's like giving aspirin for a brain tumor - it won't hurt, but it does not help.

If you do choose to try mesalamine, then you will know in a month if it is working or not.

 

[richard1353]

Because my child only has eight weeks EEN that is very effective therapy and gains his weight and strength, I will try the medicine of 6-MP or Methotrexate when he will finish the Colonoscopy next week.
In China, I can choose Remicade thought it is expensive and no insurance.
BUT I know that 6-17 years old patients need to no effective responses to 2 of 3(1. steroids 2.EEN 3.immunomodulators) In USA . SO I think that the immunomodulators are the best choice after EEN. AND I know that the doctors like to use Methotrexate than 6-MP,such as AZA in USA.That's my understand!

 

[my little penguin]

Yes richard1535
Most most GI doctors in the US use methotrexate
Instead of 6-months/aza whenever they can

Good luck

 

[DustyKat]

I have two children with Crohn's. My son is as straight as die with treatment. My daughter isn't.

My daughter was diagnosed when she was 14 and took her meds with no issue until she hit 17, then she stopped them. Before going further I will say she was in remission at the time and has stayed in remission, she is now 25, so she hasn't had to confront a flare.

At the time I struggled with her choice big time. I couldn't for the life of me understand why she would risk the disease rearing its ugly head again. She had a very difficult lead up to her diagnosis and was only diagnosed during emergency surgery. It scared the life out of all of us.

TBH it reached a point where I just had to step back and let her make her own choices. It is a very fine line between saying nothing and saying too much and the most important thing to me at the time was to keep the lines of communication open, and nagging her take her meds or criticise her decision wasn't going to do that. The way around me trying to steer her into making informed choices was to provide her with all the relevant information I could. I researched and researched and would print out information and give it to her to read, at least that way I was able to give some sort of input without causing friction and I would just say to her...I am always here for you if you need me, no matter what.

So why would she risk going off meds?! I don't really know the answer to that but I figure it's a combination of the difficulty of being different at an age when most, if not all, of your friends are able to enjoy a medication free healthy life and the fact that a 17 year old with Crohn's is no different to a 17 year old without Crohn's, they think they are invincible.

 

[richard1353]

Hello, Dear DustyKat. Your post maybe have be misunderstood for me. So if I have the wrong opinion, please forgive me! Your son uses the medicines as doctor asked, but your daughter has no any medicines in remission since she was 17 years old! That's a good news!

 

[DustyKat]

Hi richard1353,

You have read what I wrote correctly.

My daughter was diagnosed during emergency surgery in 2006 when she was 14. The surgery put her straight into the remission and she has remained that way, so 11 years now.

It certainly is good news and I hope it continues to stay that way for a very long time to come! BUT, going off medication in the manner she did is not a course of action I would suggest or recommend for two reasons. Firstly, it would be irresponsible of me to do so, and secondly Crohn's is no different to any other disease in that there are extremes of severity and response. There is the extreme end in which some with Crohn's struggle to gain remission no matter what treatments are initiated, the other end of the spectrum is those like my daughter for which remission is gained and there they stay for very extended periods of time with no interventions. The extremes of Crohn's are the exception and not the rule with vast majority falling between those two.

At the time my daughter took herself off her medication she was on Imuran 50mg only, plus some supplements. Again bear in mind that she was diagnosed during surgery so had never had medication to treat Crohn's, including steroids, prior to surgery. Initially she stopped taking everything but over time went back to supplementing her deficiencies, i.e. B12, Iron/Folate, and Vit D. She has life long side effects of the surgery, as does my son, that being bile salt malabsorption diarrhoea which they both manage with psyllium.