My Daughter newly diagnosed

[deblaforet]

My daughter has been recently diagnosed with Crohns diesease. She has been on prednizone and recently been given Azathioprine. But she has been having flare ups ever couple of weeks. Her weight has been going up and down. She was hospitalized once this month. She complains of severe back pain that makes it hard for her to go to school. She is only 17 and I feel over whelmed with everything I have read. Just would like some advice if someone can help us.:sign0085:

 

[SarahBear]

Hi, welcome to the forum!

I'm sorry to hear what your daughter has been going through.

How long has she been taking the Prednisone and azathioprine? Is the pain in her upper or lower back? What symptoms does she have when she flares?

If you don't mind me asking, how often does she miss school? Are her grades suffering because of her absences?

 

[deblaforet]

She has been taking prednizone for three months and the azathioprine for only a month. She complains the pain is in her lower back. As for school well there has been 55 days and she has missed 30 but her grades are good and she keeps up with all her homework. This is her grade 12 year and wants to enjoy all its suppose to be but her being sick has really gotten her down. Any suggestions??

 

[CrohnsChicago]

Welcome Deblaforet...so sorry your daughter is experiencing such discomfort, but I'm sure there are folks here who could definitely relate and maybe offer you some helpful advice.

Where exactly is her back pain located? Does it travel/radiate around the back?
Can she describe how the pain feels?
Did the pain start before or after the azathioprine?

I have read somewhere that back pain can be a side effect of aza and is worth mentioning to her doctor just to be on the safe side of things...
http://www.webmd.com/drugs/drug-13771-Azathioprine+Oral.aspx?drugid=13771&drugname=Azathioprine+Oral

 

[SarahBear]

Azathioprine can sometimes take up to a few months to start working - so hopefully, it'll kick in soon and she'll feel better.

I'm afraid I don't know much about how to increase her attendance. It's great that she's keeping up with all of her school work! You might want to have a look around the Parents of Kids with IBD section. Someone there has probably been in a similar situation and can give you some ideas.

 

[Gazza]

Hi, prednisolone can make the bones weak the back pain possibley could be related to that. Get your daughter to her GP and ask for a DEXA Scan which basically checks your bones. Sending my thoughts your daughters way

 

[Gazza]

Could home tutoring be a option?

 

[CrohnsChicago]

Yes, prednisone can also cause pain for some, it usually helped most of my pain though...however once I came off of it it gave me joint pain in my knees for a few weeks. I think it was a withdrawal symptom because I never experienced it before taking pred for the first time.

I remember when I had to leave school for a month after a hip surgery when I was young, my mom was able to make arrangements with the school to send over someone to home school/tutor me once or twice a week so that I was keeping up with my classmates and would be up to date when I returned to school.

Maybe speak with the school nurse or her HS counselor to see what can be done?

 

[Farmwife]

Hi and welcome.
So sorry to hear about all the problems for her.
Please feel free to stop by the Parents Forum.
Wonderful advice and support from Parents going through the same hardships you are.

 

[deblaforet]

Thank you everyone all your support is helping. Her GP isnt really helping, she says she has never heard of Crohns and back pain being linked. I have to wait till we see the specialist again.

 

[Jmrogers4]

Welcome to the forum sorry about your daughter, yes definitely check out the parents forum.
Is she on a 504 for school this can help with missed days, make up homework plan.
My son was on aza for 3 years and it does take a while for it to kick in. Not sure about the back pain. Hope she is feeling better soon and can take full advantage of her senior year

 

[LittleChloe]

Hey there my 16 year old daughter was diagnosed a year ago. It takes a while to settle into a routine of what works but it does get better. Chloe takes Ldn and is doing well on it. There's an Ldn sub forum on here if you want to know more. Best wishes

 

[my little penguin]

Welcome ..
My son was dx a year ago at age 7.
He has back and other large joint pain.
Kids sometimes have a lot of extra intestinal manifestations( eim)
A Rheumotologist can help with that side of things.
My son sees both a Rheumo and a Gi .
Are they checking her tmpt and ast and alt levels every week to two weeks??

 

[DustyKat]

Hi deblaforet and :welcome:

I'm so sorry to hear about your daughter...:hug:

As my little penguin has said, there are many EIM's of Crohn's and one of those are arthritic pain that can affect the large joints of the body as well as the smaller joints. One of the causes of lower back pain with Crohn's is sacroiliitis and inflammation of the sacroiliac joint. The sacroiliac joint is where the spine joins the pelvis. It has been suggested that 15-20% of those with Crohn's suffer with sacroiliitis therefore it is not an uncommon link between the two, shame the GP isn't more clued up about it.

Another thing to consider if this pain only presented after the commencement medication...Prednisone can cause bone pain and for some people that pain presents in the lower back and hips.

Also as has been said, Azathioprine normally takes at least 3 months to become therapeutic so there is some way to go yet until it fully kicks in. Hopefully the combination of Pred and Aza will start to pull things back into line and your daughter will find lasting peace and relief, bless her.

When do you see the specialist again?

Do you know what your daughter's inflammatory markers (CRP/ESR) are?

Dusty. xxx

 

[afidz]

Ho and welcome!
It is so good to hear that through all this she is able to maintain her grades. I didn't starting getting sick until the end of school so I didn't have too many problems with it. Is she a member on this forum as well? There is a teens only section where she might find a lot of support fro kids that know what she is going through. Hope she starts feeling better soon so she can enjoy the rest of her senior year!

 

[Catherine]

Nothing to much add. Welcome to this great forum.

My daughter is also 17 amd was dx in january.

Do mention the back pain to her specialist.