Can I just be sad for a moment?

[GirlwiththeCurl]

I think the diagnoses are starting to sink in. My daughter is so cheerful and she is taking everything about as well as I could hope for, but I am starting to just feel really sad. She is about to start first grade, and she was the littlest one in her class last year and has not grown a lot and I am starting to wonder when in the world she will grow, especially since she is on prednisone.

I am also worried about school because self-control has never been her strong suit, and since starting the prednisone her impulse control had gone from improving to non-existent. Also, about one night out of five she has trouble sleeping, and will wake up in the night and be unable to sleep. She woke up at 1:30 once and never went back to sleep. She has had a couple of nights when she was up for over three hours. This is hard on all of us. Anyway, I can just see school being a debacle. I asked the doc about a 504, but she was reluctant to write anything up, because L is asymptomatic as far as her PSC and AIH go (she's still having diarrhea though... Sigh).

Thanks for listening to my whine.

 

[Mollydolly]

I was in school with crohns young, get the 504 plan in motion now it will help in case of absences due to flares and also with extra bathroom privliages with no argument. Some people understand crohns some don't and it really helped me in school with my 504 plan as it went with me through my whole schooling and crohns issues including tutors and stuff when I was out sick.

 

[Maya142]

She should be allowed a 504 even if she doesn't currently have symptoms from the diseases right now. She's having issues with the treatment (pred, for example) and so she needs accomodations. I'm sure someone who has more advice and is better versed in the ADA rules will chime in shortly. CCFA has a good template that lists some of the possible accomodations.

It does take quite a while to come to terms with this. I didn't fully believe it for almost a year. The first few months are the hardest. Hang in there.

 

[Mr chicken]

Big hugs
You only need a letter with the dx from the doc
Not an actual written 504 plan
The school and you can come up with what works for your dd

Pred makes it hard to sleep ( Ds has been on it since April )
Also focus etc...
Did they say how long till she weans ???
Below a certain dose Ds got a lot better sleep wise

Grieving is hard with every new dx we all go through it
School will be ok
Your on top of it
Just keep talking to them
Ask to speak to the Gi social worker they can help with the letter and the school of need be

Ds was dx in second grade but was sick all of 1st grade
I can say now in 6 th grade things are ok and have been for a long time .
It will be ok but your going to have a lot of talks to educate them over and over

 

[GirlwiththeCurl]

L has started weaning, but it is slow, about a 3 mg drop every three weeks. The doctor said they don't want her on it more than six months, but it will be dependant on her liver enzymes staying low and the azathioprine being effective, both for the AIH and IBD. She is currently taking 15 mg, and she just had blood work to check her liver enzymes so hopefully she will get to decrease again soon.

 

[Mr chicken]

That's good once they get at or below 10 mg
Things get dramatically better side effect wise
So only a few more weeks
Ds is decreasing by 1 mg every two weeks
Takes forever but less side effects that way and easier on his system

 

[kimmidwife]

I am with you there on the being sad. I am feeling that way the past few days as well. It is very hard both for us and our kids and adjusting to a new norm. Sending you gentle hugs!

 

[Jonncadensmom]

I also want to just be sad for a moment! I am extremely layed back and don't get worked up easily. I'm always telling my son to not freak out until he sees me freaking out! Well, I'm almost to that point! But I know I have to keep it together for his sake. I allowed myself a few minutes to cry over the loss of my "normal" healthy child, and am now going to be focusing on being the best darn Crohn's mom I can be!

 

[araceli]

:ghug:

 

[Daytripper]

Hi! I work at a school and if your child was at my school and you came to me about your child's issues I would 100% look out for them- I would ensure that all staff knew about the condition and the side effects that can occur as well as creating a bathroom pass for your child so that they can leave whenever they want to without permission. What I'm trying to say is find a great teacher at the school and buddy up with them so they are always a point of contact for you and you know you always have somebody looking out for your child and you know your child always has a point of contact at school if anything is wrong. A lot of the time everything is about the legality of things, but if you find a teacher with a heart then they will stick by you and your daughter no matter what without the need for anything else. Good luck with everything, it's important to let your child chill out and re cooperate, but don't forget to give yourself some chill time too xoxoxo

 

[CarolinAlaska]

I totally get being sad. I was really thrown for a loop after my daughter's diagnosis, and I cried a lot for months... I would encourage the 504. If she is having issues from her treatment, and it sounds like she is, the 504 could be helpful. Hugs.

 

[Mehita]

Can I be a little sad too?

I don't mean to be Debbie Downer, but after several years of remission, it's kind of hitting me that this stupid disease never goes away. Ever. Just when you get some time to breathe, boom. I think it's hitting DS too which is even harder to watch.

Still learning to dance in the rain here.

 

[pdx]

So sorry that things are so rough right now. :ghug: