MY 11 year old daughter has CD, She is an amazing kid, stronger than I :)

[Starfish7]

:hug:Hello, I just joined this forum, my daughter is 11 and was diagnosed with CD in March 2010.It seemed like a flu at first( 2 1/2 weeks until officially diagnosed) during which the school principal had been difficult re: her attendence.)I remember feeling very worried and running from doctor's office to ER, and nothing, One night I helped her into the bath and seen how thin she was - and I panicked, I called the Hospital and I serendipidously reached the head of the GI dept. I was hopeful when she was released from the hospital with Pentasa, and a 53-day steroid regimen that it was manageable. She was on Homeschooling, and was eager to return to her friends. She did go back to school, with her chipmunk cheeks. I thought it would empower her to walk to raise $ for CCFA, and we raised $600.00/ in 5 days.I assisted her to write her story and had it bound. She finished the school year and I was expecting to see good results on her upcoming MRI. The strange thing about this disease is ,she can appear normal and healthy but her MRI and bloodwork reveal a different tale. By the time the Chron's patients flare- They are very ill !!
She has Hydronephrosis on her rt Kidney and scar tissue in her terminal illeum - Chrons complications. They put her one a month supply of Cipro - 0, she then went on Remicade for the induction period, - 0 and we are now seeing surgeons. I am told its rare, but she has back flow on the right kidney and if it doesnt get addressed , she will loose her kidney function. She will need to get a ressection surgery, and it will fix the Kidney backflow issue. I try to speak privately to the doctors about her condition, and save her stress and/ grief but tommorow we meet with the pediatric surgeon. I am privately grieving over an illness that has impacted my daughter and our family in a huge way. I am afraid whats in store in the future.
In closing, I also want to say that strangely a woman in our neighborhood recently confronted me regarding my approach to my daughters disease. Apparently , she thought I should have said nothing!!! (in the beginning, when she was out of school and hospitalized etc) and when she returned to school w/ moon face - and kids asked her what happened? I havent spoke about it since, as its her business- however if she had juvenille diabetes, maybe this wouldnt be an issue? Why is anything with the lower unit so taboo?

 

[lynx]

Welcome to the Forum! Glad to have you here....

Why is anything with the lower unit so taboo?

In my opinion its because people are, in general, unable to understand that that is part of the body too...its an image thing...and coupled with the fact that some people are raised by insane people who tell them things like sex is dirty, or you should "NEVER talk about such things" whatever those things may be...usually having to do with reproductive organs or our way of elimination of waste.
a lot of this garbage is made by meshing false information and myth with strong religious belief and, in a nut shell, it is perpetuated through the generations. So this neighbor probably had a parent or relative that told her as a little girl that those things should not be talked about. STUPID, RIGHT?

Humans are weird...

 

[Kathryn]

It sounds like you have one strong daughter and that she has a strong and supportive mother, you! There are lots of parents of kids with CD on this forum and even a special place for them to share information and support with each other, I'm sure it will help.

I'm sorry your daughter has CD, but I'm glad you found this forum.

As for your neighbor who thinks you should say nothing, I wouldn't worry about it and say whatever you feel is necessary or whatever you are comfortable with sharing. If she doesn't like it, she doesn't have to listen and I'm sure if she approaches you about it again you can tell her as much in a polite manner. Talking about this disease, or any disease, shouldn't be taboo. I get the whole "we have some hellaciously embarrassing symptoms going on" sometimes but advocacy and education should never be withheld!

-Kathryn

 

[Dexky]

Welcome Starfish!! My 11 yr old son was dxed last Dec. Did the lady mean you shouldn't have discussed it with your daughter or shouldn't talk about it at all?? Unfortunately, it seems people's unwillingness to discuss such matters has kept crohns under the radar!! I'm guilty!! Until EJ's dx, I had never heard of crohns!!

I'm sorry your little girl is going through so much, but you've come to a great place for friends and commiseration. Good luck to you both!!

 

[DougUte]

Starfish.... I can't beleive some people! What your neighbor is saying is Don't talk about it because it makes ME uncomfortable! Gee.

 

[DustyKat]

Hi Starfish and :welcome:

I'm sorry you had to find yourself here but having said that this is a fab place for support and info plus there are many parents and carers hanging out here.

My daughter was not diagnosed until she was on the operating table but it was actually the same issue your daughter is having with her right kidney that brought things to a head for Roo. After Roo's resection an ultrasound at 3 months post op showed the kidney to be functioning normally again. Roo had her surgery 4 years ago and has been in remission since then, so I hope more than anything it is the same for your daughter.

How is the principal now? Far more accommodating and compassionate I hope! As far as the neighbour is concerned, well she just sux. I had a similar situation happen to me, I wasn't confronted as such but more that pussy footing around approach and I must admit, if I need to be, I can be very blunt so I just said "Welcome to reality, if you don't like it then that's your problem, not mine". I then walked away because I refuse to engage people like that. Some people have said to me, well she probably didn't understand, well I don't buy that. I think I'm perceptive enough to know the difference between lack of knowledge and downright rudeness.

Please stay around and keep us posted on how you are both doing. If you have any questions don't hesitate to ask and we will do our best to answer. Just remember, nothing is too much information and there is no such thing as a dumb question! Good luck and welcome aboard!

Take care, :hug:
Dusty

 

[kate.flx]

Hi : )

That's really great your daughter is being proactive in raising funds, and she has been through a lot and does sound very strong! I couldn't imagine having to go through this at an even younger age. I think you will find the people on this forum to be helpful to you though, I have only been on a week and everyone is very nice : ) we're all just trying to get through each day and need to help each other when stuff happens.

By the way I think your neighbor may have just been trying to suggest your daughter might get embarrassed. Kids truly are cruel these days, especially the younger ones who don't understand things yet. But good for you for letting her make the decisions on who she wants to tell. My mom ran home and called everyone. Then they called everyone. And I've received many cards from unknown family members lol!

 

[tannersmom]

Hello Starfish 7!!! I have an 11 yr old son with Crohn's disease. Tanner was diagnosed with Crohns at the age of 7 and thru the years we have tried it all. Now he is facing surgery in December to remove his colon. And on top of that I think he is really stressed about it and causing his flare to worsen, he has missed 2 days of school due to stomach pain(really bad), not eating and vomiting.
As for people you will hear lots of STUPID things from people who have No clue what those who suffer with Crohns and UC go thru. It needs to be discussed and our children should not feel uncomfortable because other peoples ignorance makes them uncomfortable. I have had people early on tell me I should just have surgery to remove the diseased part! I so wanted to yell and say well why don't you take your child right now and let them start removing body parts! People!!!
Hang in there, sounds like you have an amazing girl.

 

[Starfish7]

Hello everyone, Happy Thanksgiving!! Thank you for letting me have a safe place to air it out.. I feel relief after seeing the doctor and I told my daughter what is going to occur, in a very gentle way and she seems to be handling it well. She is in middle school now, This year I presented the 504 letter ( from the GI doctor) to the school nurse before school began, as I didnt want to have attendance problems and difficulties like I did the previous year. It has helped as ,The Remicade infusions and procedures were only available during school hours. The doctors are thinking to put her on 6mp post procedure. I sure hope it puts it in remission.
" The best way out is always through" ~ Robert Frost

 

[susanfrances]

It's great that you are being so proactive... there is nothing like being summoned to the principals office when your child has been out sick and you are worried sick! We likewise did a 504 plan and our school nurse is great. There are also intermittent homebound services that waive the longer abscence period before services begin. After two days of being out, we can pick up assignments and those days count as if she were present at school.
Keep us posted!

 

[Max's Mom]

Starfish,we need people like you that will speak out about crohn's . I don't think that the average shmo out there knows anything about it. I do believe in raising money for a cure for cancer, we all know somebody who is suffering from it. But we also need a cure for crohn's . I talk to anybody that will listen about it. I have a 10-year-old with crohn's and I will do anyhting and everything to help him have a pain-free and wonderful life.Keep fighting!

 

[Craigsmum]

Hello Starfish I hope you are OK? I have had CD for 20 years. For the first 10 I didn't know what it was, too ashamed to ask for help. When it was diagnosed I kept it to myself, the word "disease" I didn't want people to think they could catch it. For years I put pressure on me and that made it worse. One day, and I cannot remember when, I decided I was going to take the lid off and tell it like it is!! I say thank you to everybody who has the courage to speak up whoever you are, how old or young, experienced or a "starter" in this journey. Thank you for sharing and in doing so helping all of us. I wish you and your daughter well and you just tell it like it is xx

 

[AZMOM]

Hi Starfish! I think I saw you on the CCFA forum in the past. I'm glad you are here. This place is the best! I just stumbled upon it a couple of months ago. In terms of what I thought forums were supposed to be, this is it!!

Everyone on here is awesome. And the Parents of Kids with IBD part is great too. Lots of knowledgeable caring people.

Your daughter is lucky to have you as a Mom. Don't stop doing what you are doing!

Hugs,