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Crohn's Disease Forum » Parents of Kids with IBD » Longing for Summertime!


01-09-2013, 04:18 PM   #1
tnsunshine
 
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Location: Estill Springs, Tennessee
Longing for Summertime!

Hi I am new here but am at my whits end to find a solution. I am a mother to a beautiful 12yr old daughter we will call Daway. She was diagnosed with Crohns at the age of 5. For the first five years we dealt with flairs about every six months which would always result in a weeks stay at the hospital on bowl rest. Not knowing a lot about medicine I thought that prednisone was a wonderful way to get the quick fix that we needed and the puffiness would always go away after a few months. I was told by her physician that it would no longer be an option for her to fall back on the prednisone due to the long term damage it could do to her body. She in in middle school this year. She is a very outgoing child. Despite the year of prednisone she had and the 50+ pounds she gained due to that year she is a very take me or leave me kind of kid. Now here comes the problems...
First she is at a new school and all the rules changed. She no longer has the comfort of the Elementary office staff she had for the past 6yrs. She now has to go to the nurses room if she has an accident (no keeping extra clothes in the restroom just in case of an accident, or the buddy system to keep an eye on how long she is in the restroom) A lot more children that have the potential to be sick and their parents send them to school anyway due to the fact that only a doctors excuse is recognized as a true excuse. Now to top it off her stomach is VERY active in the morning!! And an 30 min bus ride with bumps, sudden stops and the hitting of a few mail boxes along the way (not every day but it has happened) her day starts with such anxiety! I have now the time to take her to school but if I choose to take a new job it will become hard again. Now if your wondering why this is not being taken up with her doctor it is because he wants to start her on Remicade. To be quite honest this scares the crap out of me. I feel she is too young to use a "big gun" what if she needs it when she is older and I don't believe they have studied enough cases with children and the long term effects. What I know for certain is my childs crohns is nerve activated! I have asked for her to be put on the mildest of nerve pill just to take the edge off but have been told she is too young!? You can want to put a toxic drug into my childs system and have her take antiinflamitory drugs for years but a small nerve pill to help her relax and not stay so stressed is not a good idea??? So I guess my questions are these...
Has anyone resorted to homeschooling your child due to their condition? I hate to take her out of her school because she is a very social child but she stays so filled with anxiety that I know I would hate to have to live like that! And any advice I can receive from mothers who have gone through the start of puberty with a girl and the changes would be well welcomed. This alone has cause problems of its own to deal with on top of the normal stomach cramping. Just wish we could live in summertime all the time! Carefree thats how she is then and life is good.
01-09-2013, 04:26 PM   #2
Jmrogers4
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Does she have a 504? My son is on one at school. Here is a link to one of the threads on it if she does not
http://www.crohnsforum.com/showthread.php?t=42882.
A lot of kids on here use remicade and it has been a miracle for them. You have to way the low chance of risks with the damage being caused by under-treating the disease. I'm sure more parents will be along shortly to give you more information about remicade.
Is she currently taking any other meds? A lot of parents also do EN (entrenal nutrition) instead of pred. It is a first line treatment in most other countries besides the US and has been proven to be as effective as prednisone in treating pediatric patients while flaring.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
01-09-2013, 04:59 PM   #3
tnsunshine
 
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She is on her 6mp and Lialda. For years she took the 6MP and Asacol but like I said had to use the prednisone about every six months after complete bowel rest. I hope to get more first hand information from parents who have chosen to use Remicade. But for now I do think that nerves are playing the biggest part in Daways condition. I have two cousins who have dealt with Crohns for years. They were both in their twenties before finding out. I just lost one of them a year ago do to liver damage from the cocktails of drugs he had tried over the years he was 52. My other cousin has been able to control hers with pro-biotics after years of other drugs and she is 45. I understand not all cases are alike but would really like to way all options before putting her through that.
01-09-2013, 05:15 PM   #4
Jmrogers4
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I can totally understand. There are no easy decisions it seems when it come to Crohn's. We are here for support and hopefully some been there done that kind of knowledge. My son was on Imuran (azathioprine) for several years which is the same class of drug as 6mp. We are currently on LDN but like everything else it is not for everyone. The biggest issue is there has not been enough research on it. Hopefully that has changed I know it has worked for us and a few others but it is not for everyone. You have to find what works for you and your daughter and what you are comfortable with while at the same time working towards remission.
This is a great place you have come to for all the options so that you and her GI can have a good conversation about what's next.
I tell you I'm always hoping for summertime (especially now with 5" of snow on the ground) Just wait till our Aussie mom's hop on, they are all complaining about how hot it is there right now (said with much love Dusty and Catherine)
01-09-2013, 05:19 PM   #5
izzi'smom
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My dd was on remi at 4 years. I felt the same as you but after pred quit working I feel as if our options were limited. We a actually travelled to Boston to get a second opinion before conceding to reno. You Re correct re long term studies but facing untreated disease for a prolonged period of time is also stay. Wishing you luck...it's a tough road!
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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.
01-09-2013, 07:57 PM   #6
my little penguin
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Same here my child is 9 and on remicade .
He was not able to get off pred even though he had been on methotrexate .
As far as her anxiety- there is cognitive behavioral therapy-
They use it a lot in children with Ibd.
You teach the child how to take control as well as relax etc...
Most Ibd clinics have a psych on staff who does- teaches this technique.

Second the 504 plan we have one DS - it works wonders.

Most doc do not offer or suggest remicade unless they feel the child really needs remicade .
Using pred every six months is not under control .

Remicade has been our miracle
There are a lot of papers on the study's. of remicade and children
Here
http://www.crohnsforum.com/showthread.php?t=43002

Remicade has made it so you would not know my child had Ibd 9 out of 10 days.
So worth ever minute.

Fwiw Ibd is part of her life now but not the whole of her
It is something she will have her entire life _
So getting counseling to help her would be a good thing.
Keeping things as normal as possible is also good
Getting to the right meds so bus rides don't bother her is priceless.


Good luck in your search

Good luck and welcome
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01-09-2013, 08:07 PM   #7
Dexky
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Welcome Tnsunshine! My son was put on Humira at age 11 after failing 6mp. He has other issues which cause him to be on several other medications but I must say that if Humira was the only med he had to take, I would consider that a blessing.

My son's GI is at Vanderbilt. I see you're not too far from there. Where is her GI?

I often think all these GI's are just taking stabs in the dark! One picks Remi and another picks Humira. One starts with the small guns and another goes straight for the big ones.

Good luck!!..whatever you decide to do
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Mark, father of EJ

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

No more 6mp
Currently in the Humira Club
01-09-2013, 10:13 PM   #8
kimmidwife
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Hi and welcome! My daughter was diagnosed at 11 and we have tried many things u til we now have her on LDN which is finally working and put her into remission. We made the decision this year to pull her out of regular school and homeschool her.we recently moved to Florida and even with an IEP found the schools were not understanding and giving her issues about going to the bathroom and issues about being absent during flare ups. My daughter is also very social so it was a tough decision but I am happy we did it. She is a lot more relaxed and happy now.
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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.
01-09-2013, 10:28 PM   #9
tnsunshine
 
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Mark, thanks for the information. Yes Daway has been going to Vanderbilt since 2005. We were referred there due to the fact our pediatrician could not figure out what was wrong. That is where she has spent her weeks in the past on bowel rest. We have changed Dr.'s from Kent Williams to Dedrick Moulton. Absolutely love Dr. Moulton and his attitude about this disease just looking for another choice of treatment at this time. Such different approaches to this disease even had one Dr. (on call) release us from the hospital on a Sunday ( were suppose to be there till Friday on bowel rest) and told to buy the Markers Diet book. Only for me to get a very angry phone call on Monday from Dr. Williams on why I would removed my daughter from the hospital against his wishes!! Anyway after five years of only short remissions I demanded a new physician. Like I said Dr Moultons is a wonderful physician but I feel a low dose nerve pill should be tried first!! She was first diagnosed with UC but after biopsy came back they changed it to Crohns. There are certain triggers besides her nerves we stay away from like beef and strangely enough heated pools we assume it is due to the high chlorine content. But I will do more research on Remicade and maybe I can be more open minded to the option. Thanks again and best wishes for EJ.
01-09-2013, 10:45 PM   #10
tnsunshine
 
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Kim, thank you for your response on the home school choice. I am glad you have found it helpful for your daughter. But on a totally different note the picture of your daughter took me by total surprise! She looks identical to my sister at that age!! I don't mean to sound crazy but I lost my sister in 2008 unexpectedly she was 44. She was always trying to help me find information for Daway and her condition. I am going to take this as a sign that I am on the right tract in getting her the help she needs. I am going to the school board tomorrow to see what her options may be. Thanks again!!
01-10-2013, 03:44 AM   #11
DustyKat
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Hi tnsunshine and

Yes! By all means take my Summer! I'll even pay you to take it away from me!

Seriously though, I can well imagine your desire to have your daughter enjoying the long weeks away from the stress and worry of school, bless her. I am so sorry to hear that they won't consider more seriously the psychological issues she has and the effect on her disease. Many a member on this forum will agree wholeheartedly with you about the role of stress on their disease.

I can't really give any advice about your schooling system but here is another thread you may like to look at...

http://www.crohnsforum.com/showthread.php?t=18420

We have no experience with Remicade at our end but I know, as we all do, the fear that these IBD medications bring and that fear often shifts as your circumstances change. I feared the thought of my son perhaps being prescribed Humira but when that was no longer an option and surgery became his only course of action I would have gladly taken the Humira. You're damned if you do and you're damned if you don't. Ugh!

Is there anything in particular you wanted to know about puberty?

Good luck and welcome aboard!

Dusty. xxx
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