Not sure

[Hope345]

As a mother of a teen trying to "deal" with all of this, I am not sure of anything right now.

we are still in transition to using the mesalamine enemas, but she continues to have bathroom issues, so returns to her cortifoam... slowly improving.

She shuts completely down when there is any mention of doing home school. She feels as if it is pointless right now. She is very strong willed and is just trying to figure out everything.

Much of her day is spent in bed..

My heart goes out to her and I dont think pushing school right now is the answer, but not sure how to bring her emotionally around.

any advice?

 

[DustyKat]

{HUGS} to you both. :ghug:

I know I am not telling you anything when I say this is so hard.

I had major issues with Sarah at one point and it surely was an anxious and heartbreaking time. I didn’t know what to do, my main focus was trying to keep what little lines of communication were open stayed that way. I feared that if I pushed her too hard she would cease to tell me the things that were the most important. For me the only thing I could find to deal with it was for her to go to counselling. I felt that it was imperative that she have someone that was independent of her family and friends and would not judge anything she may say. Sarah said it never helped but I saw a difference in her and I can’t help but think it had a profound impact on her when she decided to do psychology at university.

As time went on she found others on Facebook with Crohns that she could talk to in an open, honest and non judgemental way.

I so hope you find the answers you need hun and your lass is soon able to get on top of things, bless her. :heart:

Dusty. xxx

 

[greypup]

We haven't/don't push either when our parenting intuition says not to. Sometimes it's such a fine line between pushing, encouraging and lingering. I also believe, like Dusty, that an outside expert opinion can help determine what's best and help our kiddos help themselves.

We are fortunate to have found an outstanding psychologist and, coincidentally, M wants to study psychology in college too.

Hang in there!

 

[Maya142]

We have also found that seeing a psychologist (one that deals with kids with chronic illnesses) has helped a LOT. My daughter was very against seeing one (she is very quiet and does not like talking) but it really has made all the difference.
Thinking of you!

 

[Jenn]

She may feel better reaching out to other teens like her. There's a teen site here: http://www.ucandcrohns.org/

 

[willsmom]

I know - it is hard.

We tried but my son wouldn't open up to a psychologist.

For us, it is a constant adjustment - one day my son is open to talking, one day not so much - especially about school and/or CD. We are trying to respect that as much as we can.

When he is open we try to make a plan together which is about what he wants to achieve, and what he must do to get there, and the consequences/adjustments to make if he can't, and we try to add lots of praises for the hard work he's doing or done.

Lucky for us, he has good goals for himself, and wants to realize those. But sometimes it is not always possible due to illness, and at times, I think he just gets tired of all this crap and how it gets in his way then he needs a break - physically and mentally - and we try to give him one as best we can, while trying to maintain and support his goals.

It is like spinning plates. But he is finding his way, and it is really, really, hard.

Hugs to you and your daughter Hope.

 

[Hope345]

thanks so much from all of you.
This especially hit hard when I found out all of my daughters were all talking together and worried that I wasnt pushing her to do school. I am trying to not get defensive because they really do love her. Without being the one doing the direct caregiving they really do not know what she is going through. She keeps so much in and then it does come tumbling out. She hates that I tell her with each treatment that she is going to get better, so I have stopped doing that. I do believe she will...and we will keep trying until she does.

I love the idea of her talking with someone who deals with kids with chronic illnesses. I will also give her the site mentioned above. I love this site and it will be most helpful to her as she gets older. talking with others her age will be so good for her, they just dont open up very much at this age.

We have made an appointment for her to see a chiropractor/allergy specialist on Monday, and an herbalist next month. This is the direction we want to go with her and we are hoping it is the answer.

I have also had to be very careful to keep our communication open. She shuts down, and I feel we are the only one in her corner right now.

I do believe she has the physical strength to do on line school but she is not there emotionally yet. At this age you have to help them want to do it. I pray that it will happen soon.......... I feel like I am going to pull all of my hair out!!!!!!!!!!!!!!!

hugs to all of you and your children too...

 

[DustyKat]

(((HUGS))) to you mum. :heart:

I hope you don’t mind if I just ramble a bit here and throw some thoughts around. :ybiggrin:

I well remember having a falling out with our GP about Sarah and her need to talk. I was no fool and realised it was it was needed but the GP sat there during one consult going on and on and on about it. It was after Sarah ‘lost it’ with him and stormed out slamming the door behind her. He then turned to me and started. I told him there was no way I was going to force her and risk shutting down what lines of communication were still open. He still didn’t get it so I ended telling him he was too bloody black and white and to F*** off! :eek2: At that point I stormed out too! :lol: I bet he was glad!

I don’t know how the education system works there and what your options are but is she able to complete her schooling at home? Is that what you both want? Does she need to socialise or is she happy in her own company?
If the education system doesn’t have strict age guidelines to completion of school years would it be an option to take the rest of the school year off and start afresh next year? Do you think taking the pressure off just now but having clear guidelines further down the track might help?

What sort of a student is she? Is she a high achiever? Is the fear of underachieving holding her back?
Matt had a blended high school/university pathway when he was diagnosed. He was in his last year of school and had 2 subjects to complete plus his uni maths units. He enrolled in three units at uni in the first semester but ended dropping two of them. It broke my heart that he had to make that decision. He knew he could pass but not to his satisfaction so felt it was better not to attempt them at all.

I don’t know, maybe building some friendship networks with other IBD kids and seeing a psychologist/counsellor along with the other appointments you have set up is the best outcome at this point in time. I know it is cliche to say it but 6 months or a year out of school is but a drop in the ocean compared to the rest of her life, provided it won’t affect her adversely if the social aspect of things is important to her.

I hope some of that makes sense!

Dusty. xxx

 

[imaboveitall]

Violet went from being a high achieving student in honors and AP classes with high avgs, in four clubs as well, to bedridden in the past five weeks so I understand all too well.

She's now on homebound and hates it, says she cannot work without the structure of a classroom setting. She had algebra2/trig as her math this semester and had a 96 avg in that class, now she is way behind and cannot catch up as the homebound teacher cannot teach this subject. She was college focused from a little kid and now I don't see how she can go to college, she can barely walk from her room to the kitchen.

Tell your girl about Starbright World, it's like this forum but for teens with chronic illness of all kinds and lots on there with Crohn's.

If you push her she may not be mentally able to apply herself to the task; V says when sick, her brain literally is in a "fog". She finds schoolwork difficult when sick; when well, it is very easy and she never slacks. Your girl may just feel too brain-foggy to even think about lessons.

 

[SupportiveMom]

Imaboveitall is right, starbright is great... My daughter is a bit nervous starting up a conversation at times about this stuff to people on the net. She uses instagram & twitter to follow others with IBD and chats that way. I have been trying to get a kids group restarted in my area to no avail. My only hope is to get some facetime with a few kids of the parents here for Gutsy Walk in our area. Finally yesterday she reached out to Violet but is still nervous about striking up a conversation. We all create our support system and what works for us. Just keep reminding your kid of the options. It will come when she needs it. Just keep supporting her like you are.

 

[kimmidwife]

My daughter would be happy to talk with yours. If you want to send me a PM and we can make a plan. It is very hard you are absolutly right. We now homeschool because the pressure at a regular school was to much for her. I don't push her but allow her to work on her own schedule. If you want some information about homeschooling please PM me so well.

 

[LCATC945]

I'm not a parent, but I do suffer with crohn's. I know exactly what your children are going through. I'm in my junior year of college but I am considered a senior because of the number of credit hours I have completed. I was diagnosed in jr. High. Went off meds and full remission for 6 years till last year. Then I flared but luckily at the end of the spring semester. So I didn't fall that far behind and was able to complete the semester. I got my flare under control with pentasa and prednisone. My doctor weened me off prednisone and I flared again. Badly. Then I got started on imuran. Which let me improve slowly while being on the original dose of prednisone. Imuran tanked my immune system and I got a stool infection and I was hospitalized for a week. I'm off imuran now and waiting to start humira, hopefully. The stool infection inflamed the crohn's badly so all my slow progress was lost. Had a colonoscopy this week that found inflammatory polyps as well that they cut out and biopsied. Still waitin for results. If humira doesn't work I'll have to have surgery. There's a little summary of my story. And now for my thoughts on all of this.

Living with this disease is hard. Both physically and emotionally. It's not something I ever wanted to talk about or bring up or tell people. When I was in remission for so long I didn't even think about it. But in jr high it was rough as well. Missed a lot of school 6th grade but I got through it. Last year during my flare I noticed symptoms...but I ignored them. Didn't even think it was the crohn's coming back. But I kept getting worse and worse. Didn't tell my parents and being at college they didn't see. But when I finally saw them they'd noticed I'd lost weight. And that I wasn't myself. I didn't tell them because I didn't want them to worry about me, looking back it was stupid of me not to get checked out sooner. This time she I started to reflare it was different. But for me I feel like a burden. Not only to my parents but also to my girlfriend who has now known me longer with me being sick than healthy. One thing that I found that has helped me out the most. (Something that a teenager never will do and will take forever to figure out) is that talking about what's going on helps. I've found people I know have it. And it helps to talk about it with them. I know as parents you guys want to be able to take this pain away from us and bare the disease for us so that we don't have to. My mom has told me that. And frankly if it was possible for her to I would never let her do it. Because no one should have to go through this. Right now because of how much trouble with my health I've had this semester, I have to take incompletes on my classes as well as me having to drop two earlier this semester to lighten my load. I am so far behind right now but I just can't focus. The fogginess is real. All I want to do is lay in bed and that's pretty much what I have done because of pain. The best thing is for your children to be able to open up, but I know it won't happen. I know that because I bottled things up for so long that it was stressing me out and making me worse. But one of the biggest things that I struggle with is the thought of being a burden, which your children probably think too. But after I finally started to open up things got less stressful for me. When I was in the hospital I went in on a Tuesday and my parents didn't leave till Saturday. They were there every day and they were babying me. They were taking off work. And I couldn't get any rest during the day because they were there. At night I couldn't get rest because of the nurses always coming in (it is a hospital afterall) I finally Friday night told them that I needed them to go home. That they can't keep calling off of work. And they need to go home. Because it's stressing me out that they are putting their whole life on pause just because I was in the hospital...and I was an adult not their baby anymore. It was hard to tell them. And my mom understood more than my dad. I know I'll always be their child. I know they want to be here for me through all of it. But there's a balance that needs to be achieved. I needed them to be able to go on with their day to day. I needed to know that to feel better about the situation. They originally told me they'd go back Thursday and yet they kept pushing it back and back and I finally just couldn't handle it anymore.

Sorry if I rambled. I hope you guys can get something out of it.

 

[LCATC945]

One thing I forgot. College. The best colleges to go to are smaller private ones. (Some are reasonably priced like mine and give good scholarships). The reason behind that is that the faculty and staff are a lot more likely to work with your children if they end up going through a flare. Just provide documentation through the dean and keep the professors in the loop. At a small college you are seen as a person rather than a number and the professors actually care about their students. Class size is as big or smaller than typical highschool classes which works well. If I was at a big university I probably would have had to drop this whole semester rather than my professors allow me to finish my classes over the summer