Would you let your newly-diagnosed kid do this?

[archaeodani]

so, DD was hospitalized for 4 days, Aug 16-20... needed a blood transfusion due to severe anemia..

She's doing REALLY well - getting caught up in school, handling the physical demands of school, etc...

her Girl Scout troop will be going on a river-tubing trip next weekend (one night camping, part of a day tubing in the river & playing, then return home..)

she's VERY fair skin to begin with, coupled with more pale than usual from anemia.. She's still learning what could trigger her.. We haven't had yet a one-month blood workup to check her azathioprine/prednisone levels..

I'm going back and forth to allow her to go...

what would you guys do, at this point in her recovery from the hospital stay, and considering we don't know yet her blood levels for anything (except her anemia is now OUT of the crucial range - it's over 10, normal is 13+)

 

[Tesscorm]

Wow, I hate these decisions! :ywow: Is the trip very far (ie, would you be able to go get her if necessary)? And, how comfortable are you with her scout leaders? Would they be able to keep an extra eye on her for any signs she's not well and for sunscreen, etc. And, no bathroom/urgency issues?

My only other question/concern, and I don't know if it's even a reasonable concern, would be bacteria in water???

But, if I was comfortable with the worries above, I'd probably let her go (but would be a nervous wreck until she got back ).

:ghug:

 

[archaeodani]

the Leader has been DD's leader for over 5 years.. and is the Outdoor Training coordinator for our local Council (she trains the leaders on camping techniques, first aid, emergencies, etc..) -- so the comfort level is there definitely.. DD will be going with this troop next year for a 15-day trip through Europe

Bacteria in the water was another issue I'd not considered.. The area is a 6+hour drive from our home, with little/no emergency facilities, nearby but as it is a very popular destination for most of the state, and it being a 2-3 hour drive from the nearest level one trauma hospital (hence - they have a helicopter if needed).. I'm OK with THAT...

She doesn't really feel up to it, as it is - so we are taking a pass on this one trip.. There will be a few more in upcoming months (S. Arizona is an awesome place, with year-round camping opportunities!!), and a long weekend Jamboree in April about a 2 hour drive from us - she's looking more forward to that, than this weekend...

I was just wondering if maybe this was too early...?

 

[ChampsMom]

I am probably one of those "over protective" Moms.... I would say no to this trip.

When my son was first diagnosed at age 13 he was suppose to be going away for Boy Scout Camp... it was a hard decision, but I said no. In the end, he was fine that week and I remember him saying, "I probably could have gone.", but alas, I'm okay with better safe than sorry and as cool as it would be for a helicopter ride - I'm thinking... nope.

 

[Catherine]

How often is dd having blood tests? The usual pattern is once week for the first month, then every two weeks.

My dd has only increase her aza dose and is back on fortnightly blood tests.

Without the blood test information it would be hard for me to make a decision.

 

[archaeodani]

Catherine -- she got a blood test a week after her hospital stay & all was normal (except the lab stored the blood incorrectly, making the potassium levels shoot sky-high & create anxiety in the doctors .. but she's OK).. Her next blood draw isn't till 3 weeks from now, a week before her next followup appt.. That's specifically to check aza levels

and, she's weaning 5mg per week off her prednisone - one week in the evening; next week the morning dose, alternating weekly /woot/

 

[DustyKat]

Hmmmm...13 is a dicey age. By that I mean it is the age you want them to start having some autonomy BUT ultimately the decision comes down to you...

I think your own judgement in what she has been through and is dealing with now, plus looking at her and assessing critically what you see, you will know what is right.

I sense that you are uneasy about this trip...the newness of the disease, the distance, the physicality of it...that being the case I would say no.

Matt had an excursion about a month out from surgery. It was to the city and involved lectures at a university. I was concerned but he said he would be okay. Of course he was in the city and not doing anything strenuous. Had it been isolated and physical it would have been an emphatic no.

Bloods: I have to agree with Catherine. When commencing Azathioprine the bloods should be done weekly for the first few weeks. These bloods are not to check the levels of the drug but rather any adverse effects the drug may be having on the liver and white cell count. So CBC and CMP should be done.

Dusty. xxx