Hurting for my 14 year old daughter

[stheod]

I'm so glad I found this forum today. My daughter was diagnosed in August 2011 with Crohns/Ulcerative Colitis. Upon being diagnosed she was hospitalized for the 1st 3 weeks of her freshman year in highschool. My daughter is a vibrant, full of life, competitive dancer. That is until this disease hit! She was in remission from this monster for only a couple months and now it strikes again. I would give anything to switch places with her so that she may be the girl she once was! She is currently on every med. possible, and will discontinue Remicade infusions for Humira injections. I pray that she will get relief from her pain! Since she is having an awful flare with a low grade fever, so she has to wait for her 1st injection. All she wants to do is be able to enjoy life and dance again!
Sorry for the venting, but I've been crying all day for her and others that are going through this. I'm sure finding this forum will help to comfort us.

 

[mikeyarmo]

Welcome to the forum stheod.

I am sorry to hear about your daughters diagnosis.

I was diagnosed as a teenager also and I know that it was really hard on my parents to see me go through everything.

While I was going through the worst of my symptoms I know it was helpful for me to try and take my condition in context. Of course it was not ideal or desirable by any stretch of the imagination, but it was not a terminal disease and it was a condition that was still better than a lot of people have had to suffer through. Believe me it was not a fun time for me (I had lost over 40 pounds and was less than 100 pounds) but it helped me deal with the condition. I did not want my parents to ignore what I was going through but I also did not want them to overly coddle me either.

I do not know if it will help you or your daughter, but I thought I would offer up some insight on what helped me during this time. Hopefully your daughter and you can recognize that what is happening now will not last forever and things will at some point get better.

Best of luck and know we are always there for you!

 

[Dexky]

Welcome Mom(I assume)! There's a Parent's forum here... http://www.crohnsforum.com/forumdisplay.php?f=49

We've all been there, some still are and we all live daily with the possibility that we will be there again. Come on over and re-intro yourself there!!

 

[Crohn's 35]

:welcome: stheod... It is so heartbreaking what you are going through as a mom. I am so lucky my daughter never caught (knock-on- wood) IBD which runs rampant in our family. I can't even fathom what it is like to have a child go through this terrible disease.

I am no a doctor but she is already on some of the "big guns" and she is not getting better. When I was in my 30's I had surgery, lapscopic and was the best thing I did, 7-10 years of bliss, but I was in denial and didnt look after my self...I know stupid but this was 1993 and not much info at that time.

It could be an option for her, I am not a doctor but maybe seeking information from her doctor, it could be for her and she can have a better life. I dunno, no guarantees but I would discuss it. I am sending you both hugs and :hang: as Mike says were are all here for you. Keep us posted.

 

[stupidbody!]

I'm so sorry your family has to go through this. I hope your daughter has relief with the Humira. I went on it 7 months ago in the midst of a terrible flare and felt better the next day. It was amazing. Everyone's different in how they respond though. It gave me my life back for the most part. I've gradually gotten a little more tired again since being on it, but it keeps most symptoms in check. In all honesty her life will never be quite the same, neither will yours. Symptoms change. She will feel good at times, terrible at other times. It's ok to grieve what you/she have been through and what you may have lost from this terrible disease. I hope she finds people that are going through this too. I think I underestimated how important it is to have people who understand even if it's just on this forum.

 

[Tesscorm]

Hi Stheod,

I'm so sorry that your daughter and family are having to deal with this! My son, 17, was diagnosed in May. I remember how surreal it seemed to be told that my son had a disease that couldn't be cured and the fear I felt at what was coming! However, once an appropriate treatment is found for your daughter, she should start feeling better and will be able to get back to her dancing! My son plays hockey and the worst of his symptoms (just before diagnosis) were during try-out season... was very frustrating for him, worrying for us, etc., etc. But, he is now on his team and doing well!

FYI, his treatment has been enteral nutrition. For the first six weeks, his diet was ONLY the treatment's formula, since the initial six week period, he has continued with the formula at 1/2 dose plus a regular diet. Other than some minor sporadic symptoms, I 'believe' (always worrying about the 'sporadic symptoms'! ) he is in remission through the formula alone (his only medication is an antacid daily).

Under the Treatment section, there is an Enteral/Elemental Nutrition sub-forum. Have a look there, lots of info. This treatment has a comparable success rate at inducing remission as steroids with no side effects. For some reason, however, it is not a popular treatment in North America. It is much more commonly used in Europe, not sure why??? So, you may have to encourage your daughter's GI to consider this. Certainly, isn't the magical cure for everyone but, will give your daughter the nutrients she needs, I believe it can be used with other medications and there are no side effects.

Don't hesitate to ask questions or share your worries here. There are lots of parents on the Parents subforum who will be happy to offer you information and support! They have been invaluable to me!

Good luck!! :ghug: