Crohn's Disease Forum » Parents of Kids with IBD » The bubble we live in

01-06-2012, 09:31 AM   #1
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QueenGothel's Avatar
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Location: Michigan, USA
The bubble we live in

Since our 10 day stay at children's hospital. I have put a big bubble around my family. I am so scared of Rowan getting the flu (we live in Michigan) that I don't allow kids who have not been vaccinated to come to play with her. Not to mention they are 3-5 years old and in preschool. Am I being a real freak? I know I cannot control this forever. I was a total germaphobe before all this and now I am way worse. I am scare of ryes syndrome and everything else that can throw us off. Her immune system is completely compromised. Most just think I am being over protective. If they were reading the side effect like I am they would be doing the same thing. Also the doctor warning me if she gets the flu be prepared for another 10 day stay at children's. She needs friends BUT is it worth it right now? I don't think so, what do you guys think?
01-06-2012, 11:32 AM   #2
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I too am a germaphobe so I totally understand where you are coming from. I vaccinated Caitlyn with the flu vaccine. Once vaccinated hopefully they will not catch the flu. We do very strict hand washing. We don't allow any friends with active cold symptoms into the house. The school environment of course we cannot control. I tell Caitlyn to wash her hands as much as possible and to stay away from anyone who has a cold. I wish I could wrap her in bubble wrap but I know that is not possible!

Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
01-06-2012, 12:46 PM   #3
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Izz goes to chance of a bubble here. She *loves* school...I wouldn't dream of keeping her home. This being said, I am a huge handwasher. She has not been vaxed for the flu this year (first time ever) nor have I, although I usually get it. (I am squeamish with her on Remi, although you can get the inactivated flu vaccine).
Especially with Izz being a bit older (just turned 5) I think socializing is important...I guess if she gets sick we will cross that bridge when we get there.
We all have our own decisions, though...what works for each of us (and our children) may be completely different (as different as the meds that do or don't work for them lol!)
Angie, mom to Izzi,10 Crohn's Colitis 1/11 prednisone, entyvio since 2015 Tried: Tacrolimus, Bactrim, simponi, Levsin, Prevacid, Prednisilone, Humira, Remicade, EN via ng, vancomycin, Pentasa, carafate, Sulfasalazine, Cortifoam enemas, dietary changes, fish oil, VSL#3.
01-06-2012, 02:43 PM   #4
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Location: New South Wales, Australia
Oh Mary, you are doing just fine hun...

Rowan is young and it is early days yet in her diagnosis, not to mention the set backs you have had. Things will settle over time and you will relax down when you find that Rowan doesn't pick up every bug that goes around.

As the others have said, hand washing is a biggie when it comes to keeping many of the bugs at bay. Generally the little ones don't mind using the gels and they are so easy to carry around. I would just keep an eye out and an ear to the ground for anything that may going around. Her friends can still come around, just ring their Mum or Dad and explain and if all is well then organise some play time.

Don't be hard on yourself hun, it won't always be like this, give it a little time and you will find your new normal and it will all fall into place.

Mum of 2 kids with Crohn's.
01-06-2012, 08:59 PM   #5
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I was knocked off balance when Brian was diagnosed. When he was sick, he didn't want to play with friends anyways so it was easy. Once he started Humira...and getting better...he's very social and he wanted to be back with his buddies. I worried...but over and over saw that he'd go to school, and not catch anything. Or his friend would seem sniffly...and he wouldn't catch it It took time, but that's what made it easier for me.

A suggestion of something I tried; the antibacterial gels would dry out his hands terribly...they make lotions now that have the antibacterial stuff in there too so I got that instead.
Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
01-06-2012, 09:38 PM   #6
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EJ, knock on every piece of wood I can find, has been sick less than either of his sisters or nearly any kid I know since commencing his Humira....please, don't let me jinx that!!!!
Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
01-07-2012, 11:01 AM   #7
G's mom
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Join Date: Apr 2011
I think when your child gets Crohn's you automatically get a helicopter. At least that is what my DH says. I know I hover way too much, but that is what I need to do to cope with what is going on. Thankfully the nurses at school also have a special needs child that I helped out with so they have no problems with it.

Take care,
01-07-2012, 12:48 PM   #8
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Vicky, I like the 'helicopter' metaphor!! That's good
Brian would say ..."I feel like I have a nurse with me ALL the time!" That meant, 'Back off please'!
01-08-2012, 04:57 PM   #9
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Join Date: Aug 2011
I think it is really natural to be anxious and protective. It is so hard when our treasured little ones have a worring condition and then having to deal with the drugs used to treat that condition.

Can you chat with your medical team - I don't know if you have a GP or a nurse. Can you find out if flu vaccine is reccommended and what precautions are helpful and advised eg antibacterial gel, and find a path that suits you and your family.

But most of all, don't feel guilty - you sound to me a wonderful Mum who justs wants to look after her child and avoid any more illness than necessary esp. avoid going back in to hospital, and that is totally sensible.

take care,
01-08-2012, 09:43 PM   #10
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Years ago, when Toronto had that SARS epidemic (thank God I didn't have to worry about Crohn's too at that time!!! ), I purchased an antibacterial dispenser that attaches to the wall and installed it right inside our side entry door (the door we always use). I can't say that we all use it all the time (especially as time has passed) but, at the time, it was handy.

And, I agree with Kathy (Brian's mom's) suggestion re the antibacterial lotion as I, too, find constant use of the regular antibacterial gel quickly dries my hands.
01-09-2012, 08:16 AM   #11
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Location: Michigan, USA
I have told my friends that once I know the Asacol is working and we are off the Pred so long as their kids don't haves sniffle we can get them together for a play date at my house. Lots of Lysol and anti- bac lotions on hand. She has been on pred since Oct and has not been off of it since her diagnosis. With that in mind again I just want to know the Asacol is doing it job before I add more factors into the mix. Thanks everyone for the advice. Idk what I would do without this forum.

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