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Risks - Where do you draw the line?

Mehita

Mehita

After two years, DS is finally in remission. Woohoo! As you all know, this disease is unpredictable so we decided to take advantage of this lull in the action and went on vacation for spring break - a great way to recharge after the ER visits, hospital stays and surgery earlier this year.

We splurged on a once in a lifetime opportunity to swim with dolphins and as I was signing the waiver release form, I was saddened to realize it truly might be a once in a lifetime opportunity for him. If you have a suppressed immune system due to meds or otherwise, you are not allowed to swim with the dolphins. I didn't know about this until we got there and was signing the waiver.

DS is currently only on Pentasa (likely starting 6mp or Remi this summer), so we were able to still swim, but it made me wonder... had he been on stronger meds, would I have let him swim anyway? Would we have risked it? We rarely go on vacation, let alone have an opportunity like this. I don't ever want Crohns to define who he is or what he is capable of achieving, yet... sometimes there are risks.

Where do you draw the line? Have you taken any risks simply to see joy on your child's face?

And what other situations have you come across where suppressed immune systems were an issue that surprised you or you weren't prepared for?
 
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Jmrogers4

Jmrogers4

Honestly - I probably would have risked it depending on how he was feeling at the time. My hubby was dx'd right before we got married. We had reservations, everything set for a honeymoon in Puerto Vellarta his GI nixed it said he wouldn't know whether to treat him for Crohn's or Montezuma, while I agreed at the time as he was in pretty bad shape. If I had the opportunity now, he is pretty good for the most part we would go and take our chances.
 
Jenn

Jenn

I wouldn't risk anytime they restrict for immune suppression. They are immune suppressed, so therefore less able to fight off infections, that's a serious, possibly fatal risk. This particular event would be a bummer to miss, but not tragic. Good to plan ahead as much as we can though. I've learned to accept that there's just some things he probably can't do because of Crohns, but that's true of anyone, I'd never be a competitive track star for instance either. That doesn't keep him from living a fulfilling life, just missing out on some nice-to-do experiences that we all do for some reason or other.
 
Farmwife

Farmwife

Nursing homes.
Sadly I've stopped visiting those. I would love for Grace to get the opportunity to volunteer with me but I can't take the chance right now. Once she's better and it's NOT flu season maybe.
 
Tesscorm

Tesscorm

Moderator
Staff member
Great question!

I'm curious to see how everyone feels... I tend to stress and worry, however, I think I also tend to take the risk because I'm worried that I'm being overly cautious (and I also hate to say 'no' and disappoint)! :ybatty: But, remicade is new to us, so I don't have much experience in having to consider these issues. :(
 
DustyKat

DustyKat

Super Moderator
For me it would depend on the activity and how my child was presenting at the time.

There are varying degrees of immunosuppression and accompanying conditions. By that I mean for example...if you have an organ transplant you are on the same immunosuppressant drugs as our children, in much larger doses, but the type of restrictions and risks they face are far greater than what our children do. Looking at my Crohn's children at this given point in time, in remission and on Imuran, I would allow it.

There are many precautions that immunosuppressed people are mean't to take when dealing with animals whether they be wild, farm or pets that primarily pertain to their environment (handling of droppings, litter boxes, aquarium water, etc). The benefits of a pet can never be underestimated but we should be mindful of keeping them in good health as well to minimise risks. The one group of animals I would be the most cautious about is primates, due to our close genetic relationship with them.

Dusty. :)
 
C

crohnsinct

Well-known member
Wow! Thanks for the warning. This is something O has talked about for years and I have actually never thought it would be a problem. I wouldn't necessarily bow out though. I would ask our GI about it and see what he says. A lot of those waivers rule out almost any little thing because they are scared of law suits. But if I made the decision alone to let her participate and something happened the guilt would eat me alive. That's why I ask the G.I.. Our GI has approved a few things saying, "the immune suppression isn't that great and I am comfortable with her participating"

She has not been allowed to travel to Ecuador, Africa, white water raft in some suspicious waters, or volunter in a nursing home.

He has O.K.'s her working in a home for developmentally challenged individuals (children and adults) even though the form clearly asked about immune suppression.
 
Jmrogers4

Jmrogers4

Nursing homes? Jack has for the past several years taken dogs from the humane society to nursing home once a week during school holidays.
He is volunteering at an animal sanctuary over spring break.
 
Lisa

Lisa

Adminstrator
Staff member
Location
New York, USA
Interesting! I recently swam with dolphins, and NEVER was anything asked/said about being immunosuppressed.....wonder what the issue is with that?.....

While I know everyone is different, here are somethings that I do, and have been doing even since starting Remicade over 7 years ago -

Volunteer firefighter
Building inspector - including labs where infectious disease work is done, etc - these are Level 1 BSL - so no protective equipment required for anyone to enter
Swam with dolphins
swim in ocean, my Mom's pond, etc...
Work in a facility that can get over 10000 visitors/day - including children
interact with daycare-aged children
work in the yard, clean up after my horses, and YES - even walk BAREFOOT in the pasture where there is manuer, etc!

I am in fact probably the 'healthiest' one in my family - I get colds/sick a lot less than my daughter and husband on average.
 
DustyKat

DustyKat

Super Moderator
@Paso - I guess most swimming with dolphins involves dolphins in captivity so it would be the aquarium water.

Again I think it boils down to the perspective of immunosuppressed that you take. Has anyone ever been warned of the dangers that pets may pose? If not then that may give you an indication of the risk involved.

I'm not sure about the nursing home either. If comes down to those that are immunosuppressed being a vulnerable population then nursing home residents are also a vulnerable population so they should cancel each other out.

Dusty. xxx
 
Clash

Clash

I've have written several responses to this and erased them all. I know there are risks and I do run things by the GI as CIC mentioned. I feel like I am giving C all the relevant info to his disease, meds and risks but, C will soon be out on his on and even well prepared, cautious, mature, rational teens make risky decisions. I think this has played a role in how I approach situations similar to the dolphin swimming. I wouldn't think twice about letting C swim with the dolphins if he has been doing well. Then it occured to me, I don't let C change the litterbox at home, ever! Ha how crazy is that, I'm going to throw him into bacteria ridden waters with sea mammals and germs but I won't let him bag up the litter! I'm terrified of toxoplasmosis, it was the first warning label I read for "people with suppressed immune systems" and it stuck! The worst part is C likes his steak medium rare, if I allowed it he would eat it rare....and undercooked meat carries the risk of toxoplasmosis. So swim with the dolphins, don't touch the cat litter but heck yeah you can have that steak oozing blood...hmm!

Edit: Of course I am dramatizing a bit with the bacterial ridden waters and germs but it goes to effect! haha
 
Henrietta78

Henrietta78

I struggle with the overprotective/paranoid thing, and for me its not so much the larger risks, but the everyday smaller "risks"- like over doing it with too many activites. I always feel defensive saying, "no, that's too much for us". I know its what is in the best interest of my child, but sometimes I feel like people think I'm overprotective. Recently we cancelled a family weekend trip b/c H wasn't TOTALLY recovered from his pneumonia...and I worried a long weekend of traveling, disrupted sleep and eating out would cause a relapse, or a flare...I think some of our family doesn't really get that it's not just "tummy trouble"...
 
DustyKat

DustyKat

Super Moderator
^^^^ LMFAO Clash!

Now if they would just find out what causes this disease and a cure for it then we wouldn't have to worry about all this shit! :lol:

Seriously though, I am with Paso on this. I am in no way down playing the potential risks but my kids are healthier than most of the young adults I know, even those I work with!
Matt has been unwell this week with some sort of URTI (Upper Respiratory Tract Infection). A few days of mild symptoms and then it hit with a vengeance on Monday and I was running around with a face like The Scream. It lasted 24 hours, that's it, one day!

Dusty. :)
 
Clash

Clash

I think part of the reason I have a laid back approach(excepting the cat litter) is because of my oldest being in college. She entered college about the same time all of C's symptoms started and before I realized she was employed, surrounded by friends and making her way through college life. I sure there were hitches and bad decisions I'll never know about. But I was so preoccupied with C's issues I didn't stop to worry about all the decisions she may be making.

I'm assumming all is well, the only time she has showed up on Fox News is when she was at spring break!! Haha..Actually it was a news story about a bikini world record or something and they used a pic of her and all her friends on the beach that a beach photographer had taken. She bathed in the notariety, which might should worry me but she's a good kid so hopefully that is the end of her 15 min fame! Ha

Anyway, C is way more mischeivous than her so I'm sure he will get into his share of predicaments and some of them will contradict what he should be doing for his illness or while on certain meds.
 
Jmrogers4

Jmrogers4

I generally worry more about my younger son as he is the risk taker. When I went to pick them up from practice the other day. I told James to walk over the the baseball field from lacrosse practice as he would be done before Jack and they are at the same sports fields. I get there and don't see James anywhere and I'm starting to get a little angry until the guys on Jack's team point out that he is sitting ON TOP of a basketball hoop/pole :eek:

Clash - Jack loves the raw steak as well, I tell him it at least has to be warm in the middle.
 
Clash

Clash

Jmrogers4, that is exactly what I tell C!! All of my family like med. rare to rare, my poor hubby likes his burnt, like charcoal.
 
izzi'smom

izzi'smom

Clash, love that profile pic!!


Izz has also talked about dolphins for the last year and I, too, was interested in getting her in the water with them at some point.

Interestingly, her dose of Tacro is the same pediatric dose at the bottom of the range for pediatric transplant patients, so she IS suppressed to the nth degree.

I have never considered not letting her do things...never crossed my mind...and other than her first ear infection this winter and a chronic cough (that has been checked multiple times) she has been healthy on Tacro and is going on a year (touch wood!!!).

I will have to give this some thought. I would love to find out why suppression is an issue.

I have asked that her school let me know when there are outbreaks of diseases, but I work in a hospital and in close conjunction with the er. We had a record breaking flu season and I didn't catch it or bring it home to the kids. :) (I didn't get vaccinated, much to my employers dismay).

Way to get us thinking today...:)
 
Clash

Clash

Thanks, Izzi'sMom! C loves to fish, well when there is nothing else to entertain him!! I love the pics of Izzi and Xavi!! Izzi looks so much like you!!
 
Mehita

Mehita

I really should have asked about the immune suppression. I have to admit I wasn't thinking too clearly... I was too excited myself! I will email the dolphin place later and let you know what I find out.
 
kimmidwife

kimmidwife

I am curious about what the risks would be. Dusty Kat you make a good point about pets. We just got a chinchilla. I know they can carry giardia. We had her checked though a d she was negative thanks goodness. I still make everyone wash their hands as soon as they are done playing with her.
 
Tesscorm

Tesscorm

Moderator
Staff member
Whew, I was worried that I was going to have to start worrying about more!! :lol: But it sounds like just making sensible choices most of the time!

Clash - you're right in that the older they get, the less control we have of their choices. Stephen's staying with friends at their dorm this weekend to celebrate St. Patrick's day :)ywow: need I say more!) I printed a copy of the remicade side effects you provided (made him read it in front of me!), I made up a wallet sized card with all his medical info/emerg. contacts (watched him put it in his wallet) and gave him lots of 'advice'... the rest is up to him.

As much as you worry and protect, sometimes it just is out of your control... For years I worried about Stephen playing hockey, for years I worried about Emily horseback riding/jumping, for years I DIDN'T worry about soccer, relaxed and enjoyed those games....... guess what... in soccer, Stephen tore a knee ligament and Emily got a concussion! No serious hockey/riding accidents! :yrolleyes:
 
Jennifer

Jennifer

Adminstrator
Staff member
Location
SLO
I didn't know I couldn't swim with dolphins. D: That's not cool. Whatever, I just wont tell them I'm on Remicade. :p

I've been on immune suppressants for a long time and never lived my life any different. I've gone to amusement parks, used public transportation for years, visited sick relatives/friends, gone to old folks homes, played around on farms and at the winery where my dad worked, brought home stray cats, caught lizards on a regular basis, rarely washed my hands or face, went to school, went to the hospital (for ER, tests), been to doctor's offices (usually the worst place to be in my opinion if you're trying to avoid sick people) and I've swam with sea turtles in Hawaii off shore. I wouldn't trade my turtle swimming experience for anything.

Main thing I've always gotten sick from was sitting around in my own home while everyone else gets to have all the fun (I really did get sick with colds and strep just by being at home).

I didn't have any limits when I was a kid and I don't put any on myself now that I'm older and on stronger meds than 6MP and steroids. If/when I have children and if they did have a suppressed immune system like mine, I would not set limits either.
 
Brian'sMom

Brian'sMom

Location
Midwest
Is having dogs a problem for crohn's kids? (I've been looking for a reason to pass them on to someone else for YEARS!!) :):):) Yip Yappy malteses that bark a lot
 
Twiggy930

Twiggy930

Location
Canada
I am amused because I am reading this right after letting my son eat sushi for dinner! :yfaint: It was from a place we always go to which we know has a clean kitchen and good fish. Heck, I ate there when I was pregnant with the kids. We also have a bunch of pets (lizards, budgie, dog and fish) and they have never been a problem.

Two years ago (before my son's diagnosis) our family went to Peru for a vacation and in preparation for the trip we all got the Yellow Fever vaccination. Now that my son is on azathioprine he can no longer have that vaccination because it is a live vaccine. The vaccination is good for 10 years so I figure we have about 8 years in which to get in as much travel to places that require that vaccine. :ybatty:

In all seriousness I do plan to go to Africa one day with the kids.
 
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my little penguin

my little penguin

Moderator
Staff member
Ds has been on some version of immunosuppression since Oct 2011 ( so a year and half)
WE have talked with his docs numerous times - and do not limit anything activity-wise based on the drugs.
The only thing we have been told to limit was swimming when he had an open wound ( more than a normal kid scrape ;) ) and that was only after he developed cellulitis.

IF we are in doubt we ask the gi but typically they do not want us to limit.
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
izzi'smom said:
I have never considered not letting her do things...never crossed my mind...
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That's the way we've been with EJ as well. I figure he's going to miss out on a lot in life as it is so I'm willing to take the chance while he is relatively healthy.

And all this talk about pets!!! My wife is a vet…EJ and I would have to move out to get away from animals!!…..hmmmmm…EJ pack your bags. Bachelor pad!!!
 
izzi'smom

izzi'smom

^^
I think that's where I was coming from as well...last summer we were able to hike and boat...two things that were impossible the summer before (heck, we couldn't even take a long walk around the neighborhood without her needing a restroom). While I truly would never forgive myself if she DID get sick, I can't imagine her growing up and missing out on life experiences "just in case".
 
Samboi

Samboi

Location
Australia
When I'm feeling fit and healthy - I disregard warnings about what I can and can't do etc.
When I'm sick with some infection I've picked up - I listen to every warning.

My doctor recently gave me a very stern lecture about where I am allowed to travel whilst I'm on Humira. She ruled out Sth America and most of Asia.
Foolishly - last year I traveled around Cambodia six weeks after having Surgery. I was sick of being sick and feeling defiant. I got through the trip - but only just.
I am more considered with my decisions now.
I don't like being restricted.
But I don't like falling sick with something I could avoid.
 
Maree.

Maree.

Sounds like I should get Liam vaccination for Yellow Fever now (given Twiggy's tip about it lasting 10 years) just in case he does end up need immune suppressant medication at some point in the future.

My husband's team cover Middle East & Africa and they have a big project in Ghana and we have close friends in Tanzania we've been promising to visit. So hoping to fit an African trip for myself and the kids sometime in the next year, just need to get school holidays to line up with my husbands work schedule.
 
C

crohnsinct

Well-known member
Ha! Right Brians mom?! But honestly I think the incidence of IBD in those countries is much lower.

O's trip to Ecuador and Africa were stopped because she couldn't get the yellow fever vaccine and those countries wouldn't let her in without it. So the decision was completely out of our hands so yeah get those vaccines now while you can!

A trip to India was stopped by her G.I. and Infectious Disease doc because of the high incidence of TB and her Remicade use. Then two months later a small TB out break in her school because a child had travelled to visit family and brought it back! :ybatty:

Poor deprived child will just have to settle for Europe, Australia and such...not to mention heellllooo there are plenty of adventures and mission work to be done right here in the U.S.A.!
 
Maree.

Maree.

Two factors to consider here:

1. There seems to be a fair bit of difference in prevalence of Crohn's by geographic region, there is some discussion of this and a map here. http://www.crohnsforum.com/showthread.php?t=40182
2. As most immune suppressant medications are very expensive they are probably not affordable to many 3rd world citizens.

There are more infectious disease in the 3rd world as a result more immunisations are required to visit some of these countries. Some of which are live vaccines. Yellow fever is one of these and international regulations require people to pove they've been vaccinated for yellow fever before they can travel to countries where it is endemic.
 
kiny

kiny

Well-known member
There is an interesting inverse between TB and CD. Where TB is high, CD tends to be low, where CD is high TB is low, a number of people have noticed that. If it means anything or not I don't know, it might just be coincidence, but bacteria tend to compete between each other within the environment, whatever is causing crohn's disease might have too much competition in places where infectious diseases are high, like Africa.

CD rates are lower in Asia, but not *that* low anymore, it's half of what it is in the West in many urban areas, that's not that low anymore. It's still extremely low in Africa, they have no idea why.

It's not racial either, because first generation African immigrants tend to have crohn's disease rates that are as high as caucasians (in fact in my country they have slightly higher rates). It's likely that if we were born in Africa we wouldn't have had crohn's disease, whatever is the cause behind it, it's in the environment.
 
Tesscorm

Tesscorm

Moderator
Staff member
That's interesting Kiny. I'm curious, if people who immigrate as adults from Africa, for example, tend to have similar rates as the locals?? I'm wondering if the fact that they grew up (developed and matured) in Africa gives some protection??
 
kiny

kiny

Well-known member
Tesscorm said:
That's interesting Kiny. I'm curious, if people who immigrate as adults from Africa, for example, tend to have similar rates as the locals?? I'm wondering if the fact that they grew up (developed and matured) in Africa gives some protection??
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It doesn't here. Most immigrants in Germany and Belgium, where I live, are of Moroccan and Turkish origin (a few from central Africa) and they have higher rates than the caucasians, and many of them are first generation immigrants, meaning they have no parents who lived here and didn't grow up here, they immigrated and they got crohn's disease after immigration, at rates similar to locals.

This also makes me question the hygiene hypothesis, the hygiene hypothesis proposes that decreased contact with bacteria causes an expansion of Th cells and claim this is the reason for the increased crohn's disease rates in the West, but that doesn't match up with what happens here, those people who lived in Africa are not protected, they are only protected as long as they stay in their own environment, the minute you take them out of that environment their rates are just as high as locals.

Same thing happens in the UK with Indian immigrants btw, once those Indians immigrate, their rates go up even though the rates of their families back home are still the same.
 
Maree.

Maree.

Kiny do you happen to know is that true of people who migrate as adults or only those who spend their childhoods in Europe? I saw one thread that suggested it related to where you spend first 15 years of life, but no idea if there is any substance to that or not.
 
kiny

kiny

Well-known member
I don't know, I would guess age has little to do with it since it's never mentioned. I only know that people of Africa and the Middle East, who immigrate to here have at least as high of crohn's disease as the locals, and in the case of Moroccans they have higher rates. But in morocco the rate of crohn's disease is much lower than here. The environment is the determining factor, not the individual.
 
kiny

kiny

Well-known member
here are the specific rates for belgium, it's similar in germany but less pronounced



Locals have an incidence of 4 per 10^5 (per year), immigrants an incidence of 6 per 10^5. That's a lot higher, but in their home country the incidence is much lower. The fact they are from a country with a low incidence does not offer them any protection after they immigrate, in fact their rates are higher than the locals. Was confirmed by two studies, and Germany and Belgium are one of the few countries that have excellent records on crohn's disease populous.
 
rygon

rygon

Moderator
Talking about risks, how come we worry about swimming with dolphins (which I cant actually find any information about deaths caused by dolphin disease's, only one recorded death due to aggression), but dont even think about the travel there and back, which is far more riskier?

Personally if im feeling up to it I will try anything, yes read the warnings but come up with your own conclusion (I was told that you cannot wear contact lenses doing a bungee jump .. I think losing on of those was the least of my worries :p)

I would rather live a short fun filled, meaningful life then be old and never have done anything
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
^^^From the man who jumps out of perfectly good airplanes!! But I agree, wholeheartedly! I bet you drove your poor mother to drink though Rygon!
 
Jennifer

Jennifer

Adminstrator
Staff member
Location
SLO
rygon said:
Talking about risks, how come we worry about swimming with dolphins (which I cant actually find any information about deaths caused by dolphin disease's, only one recorded death due to aggression), but dont even think about the travel there and back, which is far more riskier?
Click to expand...
My guess is it may have something to do with fecal matter but instead of assuming and guessing I sent an email out to a place in Florida and asked them if swimming with dolphins is allowed with an impaired immune system from medication and if it isn't allowed I asked why.

If nothing else maybe we can find a place that doesn't mind if you swim with the dolphins and we can all just go there. :p I'm assuming there might not be any real danger and they are just protecting themselves from a possible lawsuit "just in case."
 
Jennifer

Jennifer

Adminstrator
Staff member
Location
SLO
I contacted Discovery Cove in Orlando Florida about swimming with the dolphins and this was their response:

"Good Evening Jennifer,

Thank you for contacting Discovery Cove. We appreciate the opportunity to provide world-class customer service!

We do not ask guests to reveal their medical history before swimming with dolphins. However, you are required to sign a participation waiver before doing a dolphin interaction. By signing that waiver you are basically stating that you do not have a medical condition that would be aggravated by participating. Please consult your physician before your visit with us.

I hope this information has been helpful. Please don’t hesitate to contact us if you have any questions, comments, or concerns.

Sincere Regards,
Liz | Guest Relations"

So basically if your doctor says its ok then you're free to swim with the dolphins at Discovery Cove. :D
 
Jmrogers4

Jmrogers4

Thanks for taking the extra step and going to the horses mouth Jennifer. This is actually something Jack has always wanted to do.
 
P

positivemum

Well my son is on Azathioprine and we are doing Discovery Cove in May. He could catch stuff just from school, the football pitch or swimming here in the Uk! We took him to Gran canaria last year and apart from worrying about germs through airplane air conditioning we didn't worry and he swam there every day. as someone else said he appears to have a stronger immune system as I can't remember his last cold/sore throat or sickness. and I was really ill in December with sinuses etc.

We have to live (within sensible precautions)
 
EthanClark

EthanClark

My son Clark just got bitten by a dog. Of course we don't even own one it was my sister,s but while looking up everything possible about dog bites it states that if you are immune compromised your risk for infection goes up imensely. I am very glad we decided to try EEN before the drugs because I would be even more worried if he had been on them. As it is his hand is infected anyway and we have to start an antibiotic. Not thrilled about that as he is in remission and I don't want to risk setting off a flare but what else can I do? I think we all just need to weigh the risks and benefits and make the best decision we can to make our children as healthy and happy as possible. Swimming with dolphins would make me very happy:smile:
 
Ya noy

Ya noy

Well, I took my step grand daughters to go swimming with dolphins thinking it would be a good experience. Only it was kind of last minute and there weren't any openings for the regular dolphin encounters. Only openings were for deep water snorkeling dophin swims. The girls were actually too young, but rather tall for their age and really wanted to go, and so we did.

When you are treading in 12 foot deep water, and dolphins start swimming up from underneath, to pop up within inches of your face, well, that's when you notice just how large their mouths actually are, and up close, their teeth are gigantic and look really sharp!

The girls were only 5 and 6 years old and they thought it was hysterical. I was scared to death and I think the dolphins knew it too, because they kept popping up in front of me over and over, as if they were having a good time terrifying me. The noises they made each time even sounded like they were laughing.

It wasn't at Discovery Cove though. Most people I know who have gone to Discovery Cove really enjoyed it. Maybe their dolphins are nicer?

But then we went on a river swim with manatees and that was a far more enjoyable experience (for me anyway). Peaceful and relaxing. Costs a lot less too.
 
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