Starting Remicade very soon

[SZellis]

Hi
TOday we were at the GI that will oversee my 12 yo sons remicade infusions. We use a GI in NYC, so he will coordinate with this GI locally at a near by hospital.
He was so nice and spent a good hour discussing it all with us and sharing his personal experience with Remicade as well (he has CD too)!
What was strange was I felt like I was on one of those medical tv shows where you watch he medical professionals speak to the family etc. Only we were the family and they were talking to us!
We are moving ahead and not sure how I feel about whether or not to combine with the 6MP hes on now...too much information for me.
I know we need to wean off the Prednisone which was recently increased upon realizing the 6mp isnt working...at all
So, tell me how you all have found the strength to move forward with all of this and not let your kids see you sweat?
I just want him to feel like he can live his life without worrying that he wont be well.
Sheryl

 

[Clash]

It does feel like a bit of a medical drama you would watch on Wednesday nights, doesn't it. It just makes your mind swirl with all the information you recieve while all the while trying to make these decisions for your child. All of the information was overwhelming and terrifying at times. At times, I think it was impossible for C not to see me sweat!!! He was older, 15, and we did make him aware of some of the concerns.

Sometimes, I just take time for myself to let out all the anxiety out without him being aware. These are hard decisions and the fears are always there but when he started feeling so much better after starting the medications it made it much easer to just enjoy the quality of life he was experiencing.

I truly hope your son finds remission soon!

 

[Sascot]

Sorry to hear about all you are trying to deal with. I really hope the Remicade works wonders which will make it all worthwhile. Most things I read on this forum seem to say that Remicade works really well and children feel so much better on it. I went and had an appointment with the GI on my own so that I could cry/worry and ask all the questions I didn't want my son to think about. Good luck!

 

[Farmwife]

:ghug:Hugs to you mom.:ghug:
Hang in there it will get better.

 

[crohnsinct]

Welcome! For us Remicade has been a miracle. I want to echo what Clash said. When you see your child feeling better and running around enjoying life it makes the your decisions sit so much better with you. I remember making the decision to go with Remicade and feeling like I was poisoning my child. Now, I can't get my child in the chair fast enough and worry that some day something may happen to make us have to give it up.

As for dealing with the anxiety...we come here and talk it our with each other. We rant, cry, laugh, question, question, question.

Good luck! I hope it works for you guys!

 

[muppet]

I know you don't want to freak out your son, but he's 12 and he can handle some of the load. My advice is not to try to put on a facade for him of stoic stoniness, unless you really think he is especially sensitive. My daughter has been dealing with Crohn's for 11 years now, and I've never hidden the seriousness of her condition, or the potential side effects of her medications, from her. I've always couched explanations in age-appropriate language, but I've never hidden medical information from her in an attempt to salve her anxiety. I think it's made her stronger in the long run. She is fully aware of how serious her condition has gotten, how dangerous some of the meds have been (in the case of Remicade she couldn't possibly not have noticed, because of our experience), and she takes it all in stride now, with support from Mom and Dad. She's an honor student, little lax on the homework but all A's in general, doing quite well, and becoming quite a writer. I'm not sharing this to brag, but to try to demonstrate: she hasn't been traumatized by our candor.

Your kid is probably tougher than you are, in no small part because teens and pre-teens think they're immortal anyway, but that's OK.

Regarding the Remicade: it's a godsend for many people and has reversed many a very serious case, but you need to watch side effects like a hawk on that stuff. Even very minor things should be reported to your doc and you should take notes. My daughter Sarah's very serious reaction to Remicade started out as just two little red dots on her left hand. We thought they were bug bites. The reaction eventually hospitalized her. Just be vigilant, not scared.

 

[Jmrogers4]

I'm going to echo everyone else's thoughts here. You make these decisions because you have to, you are strong because you have to be and when you have your moments of weakness you come on here and get support and most of the time a great laugh, we have a few that are quite the comedians
We have not used Remicade so I'm no help there but I do know it has worked wonders for some.
I'm like Muppet, we don't hide much from our son, he is 13 but then he has known about Crohn's his whole life as his father has it.
Hope he is on the road to remission soon

 

[Tesscorm]

I second Sascot's suggestion that you schedule an appointment with the GI privately.

I do agree that your son should be made aware of his medical condition, the necessary treatments and 'some' of the risks/side effects and through seeing you question options, he will 'learn' from you how to manage his disease when he's older - but I also think that it's not necessary that he know ALL the nitty-gritty now. As parents, we may overly focus on certain concerns/side effects and, while these concerns may be alleviated after a discussion with the GI, the initial 'concern' and not the 'alleviation' may stay with younger children. So, I think a private consultation will allow you to freely express your worries and then discuss them with your son once you truly know which are valid concerns and which are not. (I hope that made sense??)

:ghug:

 

[my little penguin]

Welcome
Remicade was a miracle for us as well.
My son now gets into trouble, dances sings etc...
That is what I focus on when he needs another infusion.
We aslo don't hide anything from him.
He is in the room for all of the appts since ultimately it will be him not me who has to make these decisions.
We treat side effects matter of fact.
They just are.
For him it's a little different since he has life threatening food allergies which almost killed him once.
Eating the wrong thing ( ie a cookie baked on the same pan as another cookie with nuts) can kill him immediately. He knows this so that he can make informed choices.
So for us when eating is deadly - taking a med that may have a bad side effect but probably give him a better life is worth kwim.
You would be surprised how well kids handle things.
Plus if you try to discuss separately they inadvertently hear and assume the worst since you didn't tell them.

Hugs

 

[Tesscorm]

if you try to discuss separately they inadvertently hear and assume the worst since you didn't tell them.

I agree!, was going to mention this too... it's a fine line we walk! :ybatty:

I just want to be clear, I do think our kids need to know all the relevant info but, at times, I just worry that my concerns are sometimes unwarranted or unfounded, I need to ask to know that they are indeed unwarranted but I don't necessarily want Stephen to worry about things that are unnecessary or have a negative impression of all meds.

 

[muppet]

Another angle on that might be that your kids should learn that it's OK to have "out of left field" concerns and express them and want them to be answered... not a bad skill for a patient and/or patient advocate.

 

[my little penguin]

Excellent - they are learning what to track, what to question , and how does one deal with doctors-so if you have no real questions all the time then they may assume this is what you do.
Realize my little one is still eight so we are trying to get in as much learning by example as possible while he is still willing to listen as opposed to a teenager ( who knows it all):yrolleyes:

 

[Tesscorm]

yes, I agree too... :lol: And, I hope I have taught Stephen to question... maybe it's because I am definitely a 'worrier' and probably worry too much about what turns out to be a very unlikely or inconsequential concern at times! I wouldn't want Stephen to be left with the sense of the worry but not the 'inconsequentialness' of that worry. It's that fine line again :ybatty:...

I think it also depends on the child... some may be able to understand more, others may dwell on only the 'concern' and not be reassured by the explanation, how it's been brought up, how 'old' their diagnosis is (their experience with it), etc.

Edit:

Also (more in response to MLP ), I'm not saying never to question at all in front of your child... but, that a private consultation (not always, only when there may be a need) when you can ask questions truthfully and openly without worrying about what your child is hearing might give you information that you'd otherwise go without because of your child's presence. It may also give you the opportunity to express the information to your child in a more suitable way rather than in a doctor's office when your child may also hesitate to ask you questions...

 

[DustyKat]

Hey Sheryl...:hug:

We have no experience with Remicade at our end but I hope it brings your boy long lasting peace and relief, bless him. :heart:

With my two I have always gone with the flow when it comes to talking with them about their Crohn's. I have always been open and honest with them when they ask questions, if I know the answer I tell them , if I don't then I say I don't and offer to find out for them is that is what they want. There have been times, when they have been very ill in hospital that I have kept information to the most important to what is happening at the time and then given a better explanation when they are well enough to retain it.

My philosophy is knowledge is power and that is a wonderful skill to have. It teaches them to know their body intimately, to question medical professionals, to have the confidence to move forward and make informed decisions on their own when the time comes. It also gives you the opportunity to build a special rapport with your son, one that is not only based on unconditional love but also mutual respect and honesty. When your son is of an age to leave home you will always be safe in the knowledge that should the need arise he will likely be on the phone to you asking for help and your opinion about his health.

My daughter is in control of her own health now and I am in the process having my son also take control of his. If I was to give one final piece of advice it would be to do all that is possible to keep the lines of communication open. For me that has mean't pulling back at times when all I wanted to do was dive in head first and take their pain away (physical and psychological) no matter what but it was not the time and what was needed was a gentle squishy hug and an I understand.

Funnily enough I have always found it the easiest to stay strong when I am with the kids, it is the night time that is hardest. When you first go bed and you are laying there thinking. It is at this time that I often have a cry to myself or in the shower is another fine place! :lol: There is nothing wrong with a good cry...:hug:...we all need a release, it allows us to not only grieve but to recharge our batteries and face to world afresh!

Dusty. xxx

 

[izzi'smom]

I can so echo Dusty's sentiments...I can hold myself together for an entire 2 day trip out of town to see a specialist, sitting down for an hour questioning her physician, days of hospitalization. When I am alone (it used to always come out when sitting down to share my story on the forum, or when trying to shut my brain off for the night), the tears come. I guess it's a form of therapy lol!

I always share the dumbed down version with dd. There are aspects of her care that I allow her to partake in decisions for. THere are aspects where she doesn't get to choose. But I want her to know what we are doing and why.

And sometimes, my kiddo just needs support. Sometimes, she needed to tell me that Crohn's sucks, and she needed me to agree with her. (Once she even wished it on me during a particularly painful shot of Humira).
She received the book "toilet paper flowers" a while back and still occasionally likes me to read it to her, even though her symptoms are mostly gone right now.