New diagnosis and a logistical challenge

[Hopefulmom]

My 12-year-old son was just diagnosed with CD (as in, I learned the news last night). His symptoms include weight loss and a perianal skin tag...thank goodness, at this point, he doesn't have pain, bleeding or frequent stools. His doctor, whom I trust, had initially offered Remicade as a treatment, and I actually am comfortable with that. However, and this is a huge deal to our family, my son is scheduled to leave for 6 weeks for sleep away camp. Camp is the ONE thing this child truly loves. He came out of anesthesia from the scope and said, "I'm so happy, now I can look forward to camp!" I just can't imagine having him miss it. I am willing to drive up there, take him out for a few days and have him get an infusion closer to camp (I have a few leads on how to make this happen), but I am very scared to have him so far away on a new, immunosuppressive medication. Any suggestions would be very much appreciated. I have been so impressed by the wealth of information and support on this forum.

 

[Farmwife]

Hugs and welcome.
Yes camp is doable. Tell his GI right away and find out the schedule. Usually you start Remicade in loading doses.
My Grace did it on 2, 4, 6(?) and 8 weeks of loading doses.
Once Remicade is given you can complete it in a half a day. So there might not be days to keep him out.:thumleft:

My Grace has no side effects from Remicade but some do get tired after.
However if he goes back to camp I think that will give him all the energy he needs.

 

[SupportiveMom]

Wow you are pretty busy just getting your kid diagnosed & already looking for ways to adapt! Kudos! The first initial infusions are actually close together & if I remember when my kid was on it it was 1st dose, then 2 weeks, then 4, then 8. I would try to get initial & 2 week done before camp.

The best thing you can do is what you are already doing, let him do as many normal activities possible & don't let crohns keep him down. If he can do camp he should go!

Keep us posted.

 

[Hopefulmom]

Supportivemom, for better or worse, I tend to react to challenges by getting organized. When my house is a mess, there's smooth sailing

I asked if there is some treatment that could just get him through the six weeks until he's home, and then we can start Remicade, and the doc's initial thought was steroids. Not thrilled with that for a lot of reasons.

 

[Mr chicken]

It can be done
Example of how the loading doses work
You have dose #1 on may 1st
Dose #2 is on may 15th( 2 weeks from first dose)
And dose #3 is June 12th ( 4 weeks from second dose)
Then the doses are suppose to go to every 8 weeks
Fwiw my kiddo only made it every 6 weeks

Imunnosuppresants do not make you more likely to get a cold
Just can make some infections ( requiring abx ) a little trickier but no issues for my kiddo
Good luck

 

[crohnsinct]

Second what everyone is saying and regardless of which med route you choose your child will have some degree of immune suppression. That said, many of us here find that our IBD kiddos are the healthiest in the house. My daughter has been on Remicade for three years with the addition of methotrexate for two of those years and hasn't gotten more than a few run of the mill colds. She even went on a youth mission trip where half of them returned with mono but she wasn't one of them.

If you are able to get the infusions at a center near camp then I say go for it. The thing I would be more interested in is whether or not he is able to make it to the next infusion. The first three aren't usually an issue. It is more likely when they try to move it out to 8 weeks that it becomes necessary to watch for symptoms and by that time he will be home or close to coming home anyway. Even if not, at 12, I would think he would be trustworthy enough to report anything so you could jump on it. Plus it looks like he doesn't get very troubling symptoms anyway so you should be good there!

Definitely discuss it with your GI though. They may have some good ideas as well.

 

[Maya142]

As long as he feels well enough for camp, why not?! That's great that he wants to go so much! My girls both went to sleepaway camp on biologics (Humira though, not Remicade) and while I was worried about infections, they were never really an issue. I told the girls to wash their hands a lot but I'm not even sure they did that

They had a great time and did all the things all the other kids did. The only time we ever had an issue was one year when my younger daughter was really flaring and in a lot of pain. That year we brought her home early to see her doctor (which she was very upset about - she still wanted to stay!).

We have also done steroids at camp - the nurse handled the meds but the side effects were hard to deal with (insomnia, hungry all the time, moon face etc.). They did help a lot of course, but being on a biologic was easier for my daughter than being on steroids. That said, the steroids did work and she did enjoy camp that year.

Good luck! Hope he has a wonderful time at camp.

 

[Sascot]

Hi and welcome. We haven't used Remicade, my son is on mercaptopurine and so far doesn't seem to get any sicker than the rest of the family. So long as your son is careful with hand washing and tries not to get too close to anyone sick at camp, he should be okay. Hope the treatments works well

 

[Hopefulmom]

Thanks for all the input. We will start infusions this Thursday. I will fly up to camp and bring him for an infusion in MN in two weeks. Then I'm picking him up a week early to get back home for the third infusion. It has been an emotional day, but I'm glad to have worked out a solution. Luckily, folks at my job are helping to make this happen, too. Thanks, all.

 

[Mr chicken]

Glad you have a plan.
Hope things go well

 

[kimmidwife]

Hi Hopeful Mom,
My daughter has gone to summer camp every year since before getting diagnosed. After diagnosis there were challenges. The infusions being the least of that. Firstly make sure to meet with the camp nurses and his counsellors and possibly the camp director to let them know what is going on. Make sure they realize that he may get tired more easily. Some of the medicines can make you sensitive to heat or sun make sure he is xpextra careful about sunscreen and make sure he hydrates extra well. Make sure they will be accommodating on trips with bathroom breaks. If you would like PM me and I will try to think of anything else.
We were lucky that my daughter's camp was very accommodating for her. The first year after diagnosis she has a bad flare in the middle and came home for a week but then she went back and was able to finish out the summer.