# Going back to school???



## Twiggy930 (Feb 27, 2012)

Well my son had headed back to school today and is going to try to stick it out for the whole day.  He hasn't been to school for the whole day in 5 weeks!  We tried getting him back to school a few other times but he only lasted about 1 or 2 hours before he was so exhausted (and white as a ghost) that he had to come home.  I am finding it really hard to know when to encourage him to go and when to back off and let him stay home.  It seems his symptoms are much less pronounced on the weekends...  I don't think he is making this up but I don't know what to do about it all the same.  The school is fantastic and his teacher is extremely kind so I know they will do anything and everything to ease his transition back.  I guess now all I can do is keep my fingers crossed and hope that he has a good day.  Argh!!!!! This is hard!


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## Crohn's Mom (Feb 27, 2012)

It is so hard trying to figure out whether to send them or not 
I had the same dilemma with Gab in the beginning of her illness too.  I found myself continually saying things like "Oh you can do it, all you have to do is sit there ", or "just try it for a few hours" or "why are you "fine" on the weekends but not on school days".  
Don't beat yourself up.  I don't regret "pushing" her now and then because in my mind I never wanted her to give in to her disease, and I did it from my heart out of love.
You are the only one who can decide what is right for your son.
I will say though, the "fine on weekend" may not be intentional.  It could simply be that emotionally his body/mind connection knows that there is no pressure to try and get through the school day, so just not having that mental struggle of trying to go can make him feel better ~ relaxed. Hope that makes sense ?  LOL

Are you in the US ? If so then there is something called a 504 plan that the school can put into place for your son and will ensure that they will do whatever he needs to help him pass; even if that means they have to send a tutor to your home, they will. 

Best of luck and I hope he has a good day today !
:ghug::ghug:


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## imaboveitall (Feb 27, 2012)

Yep, been there and seen that. :thumbdown:

DO look into a 504, it is legally binding and the school must honor it.
I was going to get V one but she ended up on homebound. You may check that out also, it's a huge relief for us.
The teacher comes to your house 5-8 hours per week and it's like a private tutor. Though I did have to also hire a math tutor as the teacher they sent cannot do GEOMETRY. I have requested a new teacher.

Right there with you on the fatigue thing; I wish I could say I have no idea what you are talking about but...:mad2: I do.


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## Twiggy930 (Feb 27, 2012)

We are in Canada and my son goes to a private school so we don't have access to a 504 type of plan.  The school has been good about providing us with material to work on at home but it isn't the same.  I also eventually have to go back to work, I have had to take leave without pay from my job.  

So far he has made it to recess and I have not received a call yet!


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## DustyKat (Feb 27, 2012)

How did he go Twiggy? 

It is so hard when they are this early in their diagnosis. My daughter missed significant amounts of school due to her illness and at the time I encouraged her to go but with the proviso that she could come home when she felt the need. I understand that it is different with your boy though due to his age, my daughter was 14 at the time so easier to leave at home. Perhaps you could make an arrangement with the school that he had somewhere he could go, like a sick bay, and rest if need be? 

Once things are under control it will improve Twiggy and his energy levels and time at school will become normal again but it is the here and now that is the hardest ay? :hug:

Thinking of you, :heart:
Dusty. xxx


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## Twiggy930 (Feb 27, 2012)

Clearly I jinxed myself because as soon as I posted that he hadn't called guess what... he called.  I encouraged him to stick it out 1 more hour and then I went and got him.  All total he managed 3 hours.  He is now asleep on the couch.  

Dusty - I thought about trying to find a spot in the school where he could rest.  Trouble is it is a very small school and there is no sick bay.  There is a comfortable reading chair in his classroom that he is allowed to go and sit in if he needs too.  It is a hard sell to get a 10 year old to tough out the school day when they just feel gross.  

The latest blood work has come in and he is no longer anemic.  I'm glad but I thought low iron levels were causing his fatigue...  Our GI is away for the next few days but they will call us later this week so that I can talk to her about his lack of energy.  Since the blood work looks good we have been given the go ahead to ramp up the Imuran dose some more.  Hopefully that will lead us a bit farther down the path to him feeling well.  I am having trouble being patient.


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## Sascot (Feb 27, 2012)

Hi, just wanted to say I hope you manage to get the meds sorted out so your son can get back to "normal" energy levels.  I know how you feel about missing out on school.  My son was off more than he was there for about 4 weeks recently.  I think the staff feel sorry for him and sent no work home which also had me stressed.  Had a meeting with the school guidance teacher and she was great - she is going to send textbooks to keep at home and then if he's off she can email the section he is supposed to have done.
He is back at school now but really tired and has a number of appointments at the kids hospital coming up so that will be more missed.  This is a very stressful disease!


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## DustyKat (Feb 27, 2012)

Just out of curiosty are they basing his anaemia on haemoglobin only? 

Has he had levels done for B12, Iron stores, Folate and Vitamin D? Sorry if I have asked this elsewhere. 

Also have a look are the following article in the wiki about anaemia of chronic disease:

http://www.crohnsforum.com/wiki/Anemia-of-Chronic-Disease

Lord I hope he finds some relief soon Twiggy, bless him...:hug:

Dusty. :heart:


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## Twiggy930 (Feb 28, 2012)

I am not sure what they are basing the his anaemia on.  I was of course on my cell phone in the middle of the school parking lot when they called with the results.  Next time I talk to them I am going to get them to send me a copy of the results.  Annoyingly the lab that does the test will email you a copy of the results but NOT for anyone under 19!  I am also going to request that his B12 and D levels be checked if they have not been already.  I have done a quick scan of the article on anaemia and chronic disease but I am going to look at it again later today.  Thanks for you help!

My son woke up today and felt terrible.  I got him to eat breakfast and get ready for school in the hopes that the "terrible" feeling would pass but it didn't.  He fell asleep late morning and is still asleep.


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## DustyKat (Feb 28, 2012)

It is so heartbreaking to see them like that...:hug:...I remember all too well, this time last year, when I would arrive home from work every afternoon to find Matt asleep on the lounge.  

:hang:  Mum, you are doing a fab job! 
Dusty. xxxxxxxx


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## kimmidwife (Feb 29, 2012)

Hi Twiggy,
Just wanted to say we are there with you with the whole school thing. It is so hard to know whether to push them or not. I agree with the others you are doing a great job. It is not easy.


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## Mallory's Mum (Mar 5, 2012)

We've been battling the school issue since about 3 weeks before her diagnosis.  It really is hard to know how hard to push as I hate her to miss school.  Sometimes I see the benefit of home schooling her until she gets a bit more on her feet but she really loves her friends and teachers.  You hate to take them out of that environment.

Mallory seems to be much more vibrant at times on the weekend but she often is dragging.  Sometimes I attribute the more herself time is that she is relaxed, less stressed, and able to lay around more at home.  Hopefully this week will be better for them both.  Is your son in 4th or 5th grade?  Mallory is in 3rd.


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## Twiggy930 (Mar 5, 2012)

Well as the new week begins the school issue is not any better.  It is 9am and he is on the couch asleep!  He had a terrible day on Sunday so I wasn't surprised to find him unable to go to school today.  He often seems perkier on the weekends when he can just laze about and play video games, I guess that makes sense.  

He is now fighting prednisone induced insomnia big time!  Seems like such an unfair side effect when he needs his sleep so badly!  Would welcome any tips on how to deal with the insomnia that anyone might have.

Mallory's Mum - My son is in grade 5.  He too likes school and definitely misses being with his friends.  We have a 2 week spring break coming up so at least we won't have to face the school decision every morning for a while.


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## Mallory's Mum (Mar 5, 2012)

Yeah...I typed too soon.  Mallory called to be picked up around 1245.  I don't fight with her on the issue as she tried as long as she could.  I know she is not exaggerating the pain as I catch her sleeping with a pillow under her butt etc that she wouldn't just do.  

We've got a week spring break coming up and sadly I would love to be going somewhere but that's just not an option.  We are hoping for Disney at the beginning of the summer if she's up for it.

We are battling the insomnia as well.  She takes about 1-2 hours to go to bed and then gets up at the crack of dawn.  It's nuts and we would love to hear suggestions on this as well.


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## Crohn's Mom (Mar 5, 2012)

Twiggy and Mallory, sometimes (depending on dosing rx, etc.) it's possible to just give all the prednisone early in the day.  I'm not sure of his/her dosage, timing , etc, but maybe this is a possibility and could help with the insomnia a bit ? 

I hope both of them feel better quickly ! Poor things, they really do deserve it 
:hug:


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## DustyKat (Mar 6, 2012)

@Twiggy and Mallory's Mum

I think the best you can do is to trust your gut. You know your children better than anyone, what is normal for them and what isn't, what is in character and what is out of character. I have certainly faced this same question and although my son was older I ended up giving him a gentle nudge on the days I thought he could handle it, always with the option to head home if need be. On the days he was obviously wiped out I didn't see the point in him going because what would he retain anyway. 

I do have a thread that you might like to read through as it has responses from members, speaking from their experience as children, that were in the situation our children are: 

http://www.crohnsforum.com/showthread.php?t=14702

Okay, just gotta ask Mallory's Mum. You are in the US but you don't use the spelling Mom, are you not originally from the there?  

Dusty. xxx


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