swine flu in area and new member

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disneyfan00
New Member


Date Joined Aug 2009
Total Posts : 17
   Posted 9/10/2009 9:52 AM (GMT -7)   
I finally took the plunge and posted after reading on here for 2 years.My dd is 11 and was diagnosed with Crohns in 2007.She had 6 beautiful months of Remicade before becoming allergic and having to stopped.Tried Humira for 9 months=she didnt respond.Now we are on 6mp.
 
Shes been on it 3 weeks.So far blood work is good for pancreas and liver but sed rate is 40 and shes not improving yet.I know it takes a while to kick in.Dr. decided to put her on Prednisone to bridge the gap until 6mp kicks in.We start today.She has been having pain and D. Missed a couple days of school already(which she loves).Not too great quality of life right now.

School just emailed that swine flu is in the Universities and in town and will only be a matter of time til it hits the school.They are taking precautions etc. I have an email in to the dr.about it.I feel extremely anxious about her being on 2 immune-suppressors at the same time this is going on.Pred is temporary but not sure how long.This is her first time on it except in the IV before Remicade.I feel like we are playing russian roulette.I have not slept in 3 days wondering what to do.Does anyone have any advice-opinions on what the right thing here is. Any experiences at all with this flu and being in these meds.

I am trying not to freak out and lose it here.
Thanks
Disneyfan00


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 9/10/2009 10:08 AM (GMT -7)   
I would definitely call your doctor. I would also call your school's nurse and principle. I bet they have a plan or they need one ASAP. Talk to them today and ask about their plan. Maybe you can "home school" her while the flu is in town? If you work, maybe your work would let you work from home. The flu is a situation we will have to deal with -- some on this board are dealing with now. So it will be helpful to us to see how others handle it. Please let us know how it works out!
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


disneyfan00
New Member


Date Joined Aug 2009
Total Posts : 17
   Posted 9/10/2009 10:10 AM (GMT -7)   

Well Im going to kind of answer my own question.Dr emailed me back within 20 minutes and said being on 3 immune suppressors at theropudic levels would require antibiotics prophylaxis-had to look it up-basically giving meds before you even get sick.He said she is very low on 6mp having just started so will only be at those levels for Pred. This is according to the CDC for what its worth. He said to treat it as you would any other flu.

Any opinions on this advice?

 


disneyfan00
New Member


Date Joined Aug 2009
Total Posts : 17
   Posted 9/10/2009 10:12 AM (GMT -7)   
FallColors said...
I would definitely call your doctor. I would also call your school's nurse and principle. I bet they have a plan or they need one ASAP. Talk to them today and ask about their plan. Maybe you can "home school" her while the flu is in town? If you work, maybe your work would let you work from home. The flu is a situation we will have to deal with -- some on this board are dealing with now. So it will be helpful to us to see how others handle it. Please let us know how it works out!

Its funny you say that because we have Cyber school here in PA and our own school district offers it  and I was half considering it.Dont know much about it yet though and would need to make a decision quick.

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 9/10/2009 10:30 AM (GMT -7)   
I would certainly check out the cyper school option. Don't know where you are in PA, but I do know it is a home school-friendly State. I have a friend in the Harrisburg area who is home schooling -- actually there are about 100 kids in her home school group and all the moms share the work.
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 9/10/2009 10:38 AM (GMT -7)   
Hello and Welcome, though I'm so sorry your daughter is so young and having to deal with this.

I have been on prednisone for most of my CD exisistence and on 6MP for over a decade. I have always gotten the flu shot as soon as it became available each season. This was when my own kids were what I liked to refer to as human germ pools. Those preschool years, when they brought home everything! I swear that up until two years ago, I never got sick with so much as a cold. That flu shot did something, not sure what, but it was a miracle as far as I am concerned. So from experience I would recommend getting her the flu shot for the regular flu ASAP, the one for the Swine flu as soon as it is available. Follow all CDC recommendations for precautions to prevent it from coming in to your house, and investigate that cyber school until the shot is available. But also, try to relax a bit. You stressing out is only going to make her worry too, and that can't help her at all. You are doing what you can, worrying and losing sleep isn't going to help. As a Mom, I know that is easier said than done.

Oh and I love your name! Disney is the BEST place on earth.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/10/2009 1:31 PM (GMT -7)   
I believe most folks on this forum who have been on 6mp or its sister med Imuran have found that they do not get any sicker on these meds. I would just take extra precautions i.e. washing hands frequently etc, and I agree with Zanne, at least getting the regular flu shot is smart. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

disneyfan00
New Member


Date Joined Aug 2009
Total Posts : 17
   Posted 9/11/2009 10:46 AM (GMT -7)   
Thanks for the replies. I feel better knowing there are people on both and have done ok.I already have her set up for the regular flu shot the end of September.

Have only heard horor stories about Pred so have been very nervous about how she will react to it.She can afford to gain some weight so thats not so bad .I just hope it knocks her into remission.She has onky been in remission for 7 months since 2007.

Glad to see you dont catch every little thing on the 6mp either.

As for the name-I agree Disney is the best place on earth and we try to always have a vacation set up in the future.It gives my DD something to look forward to.

Thanks Fran

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/11/2009 1:03 PM (GMT -7)   
Pred is a great med to get the inflammation under control quickly. I am sure your little one will be feeling much better soon. I wonder if she should take some Calcium with Vit D while on it to protect her little bones. Hugs to you and your little one.
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

disneyfan00
New Member


Date Joined Aug 2009
Total Posts : 17
   Posted 9/11/2009 5:36 PM (GMT -7)   

She is on Caltrate with vitamin D-have to argue with her to take it though(very stubborn-cant wait til the Pred kicks in-should be fun rolleyes )

 

Also Florastor 2X a day(never felt it did much and very expensive)

Iron pills

Multivitamin

lactose pills----

  I worry because she is small for her age and she has only grown 2 inches in 1 and a half years. I hope she finally goes into remission and has a huge growth spurt.We're not picky.If she makes it to 5 feet we'll be happy. :-)

 

Fran


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2687
   Posted 9/11/2009 6:46 PM (GMT -7)   
We did virtual school a few years ago, before just deciding to homeschool. It was pretty nice, they provided all the curriculum, some supplies, and even a borrowed computer for free. I really liked the curriculum, and they did a live lesson online with all the kids every week. Our problem was that my son was behind from the public school, so we needed something that went more at his pace. Something more tailored to him. But otherwise it would have worked out well.

My son actually just got over the swine flu. Got it at a friend's birthday party. It's a nasty flu, and he even got pneumonia a few days in to it. We were all on Tamiflu, and thank god I didn't get it. But I must admit I love that he's not in school for this reason to bring it home again! I'm telling ya I plan on staying away from crowded places this winter!
~Jennifer
 
Diagnosed with Crohn's Disease 2/06, and Health Anxiety/OCD 12/08 Taking Asacol, Questran, Toprol XL, and Celexa.


MoobyDoo
Regular Member


Date Joined Sep 2009
Total Posts : 212
   Posted 9/12/2009 6:54 AM (GMT -7)   
Hi Disney Fan. I worry about these very same things. We live in NE PA.  I don't home school, but I can tell you that my sister in law (also in PA) does for the past year for her two boys (mainly because her son has a SEVERE peanut allergy and has had many reactions at school even when no PB is "seen around"). At any rate, it is a huge commitment of her time but she loves it! Her boys are excelling way above grade level. They do interesting things together as a family to reinforce what they are learning about (such as day trips,etc). She is totally enjoying "re-learning" things right along with her kids. The cyber school sends her absolutely everything she needs to complete the lessons so she claims it's a no brainer.  Personally, I don't know if I would want to do it, but if it came down to being the only way I could protect my daughter then I would.  For now, we are lucky to be in an elem. school where they are understanding and cooperative and will send home any work she misses if/when she is absent. I would be happy to ask my sister in law for the name of the cyber school she is working with if you get to that point.
Posts refer to my 9 year old girl
  • Started with 30 mg Prednisone, tapered off over 3 months

Then continued with:

  • Pentasa, 3 blue horse-sized capsules, 3 x daily
  • Forvia multivitamin/mineral for Crohnies
  • Coromega
  • Calcium
  • VSL#3, 2 x day
  • Custom Probiotics: 6-Strain Blend, 1 x day
  • Culturelle, 1 x day


disneyfan00
New Member


Date Joined Aug 2009
Total Posts : 17
   Posted 9/12/2009 7:06 AM (GMT -7)   
Thanks Moobydoo.Its something I have been tossing around in my head. We live in Central PA and go to Geisinger.Our school district also offers a cyber school.We go in for a 504 meeting on Tuesday but as much info as possible would be great. I think it would have to be if she was god forbid pretty sick because she loves the social aspect of school right now.We'll see what happens.I would like the name if you can get it.

Fran

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 9/12/2009 8:05 AM (GMT -7)   
I was going to suggest you don't home school her if the only reason is because you are afraid of her catching swine flu. I think patients feel like a social outcast enough with this disease and have a tendancy to isolate. I think the only reason I have been successful professionaly is because my crohns was misdiagnosed all through high school and college so I was forced to just "suck it up and deal" no matter how sick I was. While I wouldn't wish that on anyone it taught me coping skills and ways to get through a school day sick. I now use those skills to get through a work day sick rather than worrying "what if my coworkers hear/smell my diarrhea?" If the risk gets to close to home (someone in her class w/ the flu or something like that) then consider keeping her home or asking her doctor about Tamiflu. I thought swine flu was most dangerous for those w/ healthy immune systems anyway. Long story short I think the social aspect of school is very important, especially with a chronic illness. If she was miserable in school and not doing well then it might be a good alternative but as long as she is happy and coping I would encourage that!
27 Year old married female.  Graduated law school this year and waiting for results of the bar exam.  Start a new job sometime in September.  Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night.  I take xanax prn for situational anxiety (aka no easy bathroom access). 


disneyfan00
New Member


Date Joined Aug 2009
Total Posts : 17
   Posted 9/12/2009 10:26 AM (GMT -7)   
I wasnt considering it just because of swine flu.There are other issues at play I wont get into on here. :-) My daughter is only 11 and has been flaring for almost 2 years  so has spent 4th,5th and now 6th sick.She has missed a third or more of school each year.Its been harder and harder to keep her caught up.She missed 2 days already this year.
 
I wouldnt take her out unless she was missing more than she could make up.I dont want her to miss out on the social aspects of school.
 
We are going for a 504 plan meeting next week so hoping they will allow a school appointed tutor after one week of missed school.Everything hinges on the school cooperating with us. I dont think I can tell her to "suck it up and deal" with vomiting,diahrea,fever at school.I know youre not saying that and Im sorry you had to deal with that.I do believe it takes a very strong person to deal with these things and overcome as you have.These days the school sends you home with any kind of fever anyway beacuse of the flu.
 
As far as kids go the fatal cases have been with children with underlying conditions and/or immune compromised.
 
Congratulations on graduating law school and good luck on the bar!! yeah

MoobyDoo
Regular Member


Date Joined Sep 2009
Total Posts : 212
   Posted 9/12/2009 11:50 AM (GMT -7)   
Disney Fan, We see Dr. Maksimak at Geisinger in Danville. Like him very much. He has told us that very few of his ped. patients end up with surgery and that it is a last resort, so I like that optimism. My daughter is flaring as we speak.  She just finished Prednisone in June after being diagnosed in March.  I can say that the prednisone (altho it has side effects like bone density loss, for ex.), was incredible. We really had no problems with it and my daughter to this day says she felt like a million bucks when she was on it.  We were careful about what she was doing (no trampoline jumping due to possible bone breakage, etc.) and she took calcium etc so it really really knocked her into remission quickly and she was soooo much happier and back to being herself. That said, the remission only seemed to last about 10 weeks as she is experiencing symptoms again now and I can see her appetite waning again. Dr. M. will likely put her on 6mercaptopurine next. Lots of folks on this board say positive things about it.  Also, I have not done this here for my child "yet," but have you considering putting her on a special diet such as SCD?  Many people claim to be healed while on it.
Posts refer to my 9 year old girl
  • Started with 30 mg Prednisone, tapered off over 3 months

Then continued with:

  • Pentasa, 3 blue horse-sized capsules, 3 x daily
  • Forvia multivitamin/mineral for Crohnies
  • Coromega
  • Calcium
  • VSL#3, 2 x day
  • Custom Probiotics: 6-Strain Blend, 1 x day
  • Culturelle, 1 x day


disneyfan00
New Member


Date Joined Aug 2009
Total Posts : 17
   Posted 9/12/2009 1:10 PM (GMT -7)   
We see Dr Tron in the same group in Danville and like him.We were suppose to see Dr. Maksimak
when my dd first got sick but was pushed up and Dr Tron had an opening. Its funny because he has avoided steroids this entire time and started with Remicade(which was wonderful though scary).He doesnt like long term steroids for children.Its just funny to see how some drs in the same group treat so differently.Our dr.believes in a top down approach in meds.Dont know whether it was the right thing or not but we're "down" to the 6mercaptopurine.So far so good.Shes been on Pred 3 days now and 6mp for 3 week.I am hopeful.
 
How did your daughter do on Pred with side effects?Was she hyper,moonface,hungry all the time, any weird side effects?
 
Havent tried the diet.She would not be very willing to comply.Im hoping as she gets older and understands really whats going on she will be more willing to try.
 
Thats so funny we go to the same group.I mightve seen you in the waiting room.LOL
 
Small world on the internet.
Fran

MoobyDoo
Regular Member


Date Joined Sep 2009
Total Posts : 212
   Posted 9/12/2009 6:59 PM (GMT -7)   
Yes Fran, "It's a Small World Afterall". LOL
 
As for the prednisone, the biggest side effect was the massive appetite increase. She wanted to eat 24/7. (Initially, this was wonderful because she had gone from about 70 lbs. down to 54 in a few months when we finally realized it was Crohn's.) Eventually, I had to restrict her a little by saying "you've eaten enough" and her eyes would tear up.  She climbed to 75 lbs. while on it.  She got a bit of the moon face, but really nothing that looked like more than weight gain to most really...no one, not friends or anyone, said much about it and this was a relief to both of us. She had gotten so thin in the face prior that it was almost a relief to see her puff up some.  Oh, another side effect I forgot about... She had trouble sleeping, getting to sleep and staying asleep was a challenge.  That said, it made for great school mornings as she was up and bouncing around ready for the day bright and early and cheerful.  None of these side effects presented what I would call "major" issues and paled in comparison to how much better she felt and looked.
 
Funny that our docs are from the same facility and have such different approaches. I think ours is starting with the most mild approach, in hopes that she'll respond positively without having to jump right into something like Remicade. That's fine by us.
 
As for the SCD, my husband and I have the same thoughts as you.  As she gets older and more mature, perhaps she'll be more willing to work at managing her disease through diet. In the meantime, we just do our best to keep her healthy and I worry endlessly. cry
 
By the way, have you ever heard of probiotic enemas?  A friend is doing this for her daughter (10 yr.) with severe colitis and she claims it is working.  A "more direct"route than oral probiotics I guess.  I am considering it.
Posts refer to my 9 year old girl
  • Started with 30 mg Prednisone, tapered off over 3 months

Then continued with:

  • Pentasa, 3 blue horse-sized capsules, 3 x daily
  • Forvia multivitamin/mineral for Crohnies
  • Coromega
  • Calcium
  • VSL#3, 2 x day
  • Custom Probiotics: 6-Strain Blend, 1 x day
  • Culturelle, 1 x day


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2687
   Posted 9/12/2009 8:09 PM (GMT -7)   
FitzyK23 said...
I was going to suggest you don't home school her if the only reason is because you are afraid of her catching swine flu. I think patients feel like a social outcast enough with this disease and have a tendancy to isolate. I think the only reason I have been successful professionaly is because my crohns was misdiagnosed all through high school and college so I was forced to just "suck it up and deal" no matter how sick I was. While I wouldn't wish that on anyone it taught me coping skills and ways to get through a school day sick. I now use those skills to get through a work day sick rather than worrying "what if my coworkers hear/smell my diarrhea?" If the risk gets to close to home (someone in her class w/ the flu or something like that) then consider keeping her home or asking her doctor about Tamiflu. I thought swine flu was most dangerous for those w/ healthy immune systems anyway. Long story short I think the social aspect of school is very important, especially with a chronic illness. If she was miserable in school and not doing well then it might be a good alternative but as long as she is happy and coping I would encourage that!

Usually I feel this way about things, but having personally seen how fast this flu turns in to a bad pneumonia in a kid that DOESN'T have added risk. I wouldn't blame anyone for wanting to take that extra precaution with a child that does. While it can hit the healthy hard, most of those who have passed away from it were the ones that had an underlying health condition. Especially with children.
 
We started homeschooling for other reasons obviously, but to me it's an added bonus. The social aspect of public school was pretty awful here, add that with the swine flu and it makes me REALLY glad he's not there. LOL You can almost always provide kids with a lot of really quality socialization outside of school anyway. So I wouldn't let that stop someone. Frankly had I been diagnosed as a kid, with the way teachers NEVER let you use the restroom, I would have wanted to be homeschooled for that alone!
 
But I really do believe this is going to be a bad year, even my doctor said he's concerned about it. When we took my son in for a follow up, he said he saw 3 cases of kids that day with it. With 2 more cases the day before. Already! He said we did great getting him in so fast for treatment, and even so it got as bad as it did. I don't want people to panic, but I think too many people are blowing this flu off as nothing. Until they see it for themself.


~Jennifer
 
Diagnosed with Crohn's Disease 2/06, and Health Anxiety/OCD 12/08 Taking Asacol, Questran, Toprol XL, and Celexa.

Post Edited (Jen77) : 9/12/2009 9:19:45 PM (GMT-6)


Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 9/12/2009 8:31 PM (GMT -7)   
Hi~ I'm a huge Disney fan, too! We go to WDW at least once a year and I post regularly on a major Disney planning board. Can't get enough! It truly IS a happy place and something I can look forward to, esp when my health is so crappy.

Regarding your daughter and swine ~ honestly, I'd do virtual school or whatever you can for awhile until 1)this blows over or 2)you decide it's best if she just move to homeschooling. Missing major chunks of time due to illness, having to deal with social stigma at that tween age that is already difficult, and opening herself up to something like swine flu seems like all great reasons to yank her for awhile. Of course, I'd ask her opinion as well.

I am not a worry wart with illness, and am pretty pro germs as I think it builds our immune systems (I don't even get flu vaccines typically!) but even I'm a little worried about this swine flu. It's just much more rampant than the seasonal flu. And it hits children especially hard.

I can't imagine it would hurt anything to pull her for awhile, and she can get her social outlets through other means.

I chaperoned a camp for kids with Crohns last summer and had girls her age in my cabin ~ they face challenges that as an adult I don't face. It's tough. I hope her doctors can get her disease under control soon.

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 9/13/2009 4:36 PM (GMT -7)   
Jen - you are very right about people not "getting" the severity until they are exposed to it. Additionally, I am lucky that where I live has not had any cases so I have had the luxury of being less concerned.

Disney - I am SO GLAD you understood what I meant in my post. I would by no means advocate anyone telling anybody w/ crohns to suck it up and deal. Since I was misdiagnosed people believed I was faking or exagerating or a hypochondriac or had a low immune system. I often just went to school sick for that reason. I also had an ovarian cyst so my symptoms were blamed on that instead of crohns. If I threw up at school I was allowed to hang in the nurses office for awhile and then sent back to class because it was just "morning sickness" from the cyst. I'm just saying that in retrospect I learned a lot that way and really found ways to push through when I felt my worst. A child shouldn't have to do that but often as adults we do. Otherwise we lose our jobs and our income and insurance, etc. So, while I wish my crohns was caught sooner and I had more help and resources I learned to advocate for myself and to get through even if I felt awful. I just think if I was allowed to stay home whenever I was sick I would have a really hard time getting through a work day as an adult w/ crohns. Hope that made sense.
27 Year old married female.  Graduated law school this year and waiting for results of the bar exam.  Start a new job sometime in September.  Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night.  I take xanax prn for situational anxiety (aka no easy bathroom access). 

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