Need suggestions, having an emotional time!

[hollym]

Hi everyone, my 11year old was diagnosed with Crohns 4/14. She started with Prednisone and Azathioprine 75mg. She was tapered off Prednisone now is just on Azathioprine. She is still not in remission but improving slowly. Recently she is complaining of joint pain in one elbow. Has anyone else experience this with their child.

Also, she has no appetite. Finding it hard to get the calories she needs in a day.

Also, she is having a hard time making it through a day of school. I'm thinking of going to half days until she is in remission. How do other parents deal with school & crohns? I have already gotten her a 504 plan but she just started 6th grade and not making it through a full day without feeling tired, or sick.

Please help me with ideas. I've shed more tears in the past few months. I need support!

Thanks,

Holly

 

[Karen in Phoenix]

Hi, Holly. My heart goes out to you and your daughter. One of the things I've found helpful are high calorie protein shakes. You can put just about anything in them that she tolerates. I use spirutein protein powder, a banana, some honey and 1 to 1 1/2 cups almond or rice milk.

 

[my little penguin]

Few things it takes a while to get in remission.
We let DS go to school but could rest in the nurses office as long as he needed ( nap an hour or two multiple times a day) this let him be in school at least for a few hours at least.

Any Ibd kiddo with joint pain should have a Rheumo on board .
Arthralgia and arthritis are common in kids with Ibd.
Gi knows the gut and rheumos know the joints from an Ibd standpoint.

As far as weight
A lot of kids need extra calories when they have Ibd to keep up growth and weight.
You can use EEN ( formula only no food ) which is as effective as pred with no side effects.
Afterwards some kids switch to en ( formula plus food) this gets the weight up.
DS drank orally peptamen jr with no food for 9 weeks while he was waiting for 6-mp to work .
Afterwards he switched to peptamen jr plus food .
He still drinks 2-3 shakes a day.
This in addition to the right med helped him grow.

Your GI can write a script and you can order it through your DME.

 

[SupportiveMom]

My daughter first had symptoms in grade 6, then missed the first months of grade 7. It was hard for her to be without her friends even when feeling so horrible.

I spoke to her teachers & principal about accommodations and something that helped was not going out for lunch recess and taking a nap. On days she felt well enough to get to school but not well enough to make it through the day she was allowed to take a nap/rest. If she doesn't want to miss out and go home this may be an alternative.

Joint pain for D was mostly around her Remicade and was evwrywhere. She gets it in her knees mostly now off &on. Tylenol &ice packs help.

 

[ChicagoMom]

I don't have any good advice but just wanted to offer my support. My 11-year-old daughter was diagnosed recently too and I know how hard this is. I lay awake at night worried about school and wonder how she will remember her 6th grade year. I hope it will not be memories of meds, doctors, etc. Anyway, I just wanted to say that I hope you can get the advice and help you and your daughter need. Good luck!

 

[Maya142]

A rheumatologist is a great idea! My daughter has arthritis and IBD too, it's more common than most people think. Heat and ice (whichever she prefers) can help joint pain. You can try a brace and see if that helps, it might.

Can she go to the nurse to nap? My daughter has done that in the past. We also do half days if she's feeling awful. It's not ideal but it is what it is unfortunately

My daughter drinks Peptamen Jr for calories and supplemental nutrition. It's not the best tasting, but she did get used to it. In the beginning we bribed her and now she's so used to drinking 2 a day, that she (mostly) does it without me bothering her to do it.

Unfortunately, there is a lot of waiting involved while her doctors try and get her into remission. Hang in there:ghug:

 

[Jmrogers4]

My son did not gain weight on azathioprine until we added supplemental EN. MLP is right aza does take a while to become theraputic and reach remission on hopefully she is on the uphill slope now and will feel even better by the time school starts.
We did the rest in nurses' office when needed and just took it day by day.

 

[Sascot]

Just wanted to add some well wishes. No extra advice than the suggestions above. Have they checked the Aza is at therapeutic levels? Enteral nutrition is a great way to help heal and get the extra calories. If she doesn't feel hungry maybe you could run a pump overnight through an NG tube like a lot of kids on here.

 

[jamesmom]

hollym and Chicagomom - I don't have any great insight, but I just wanted to say I also have a newly diagnosed 11 year old and I share your concerns about school and life in general. It seems like all we do is wait and worry! Wait for scheduled appointments, wait for test results, wait for medicines to work, and worry, worry, worry...

I am so glad I stumbled upon this forum. I have found it to be so helpful to read the experiences of other parents. I hope you do too.

 

[Jenn]

Welcome and sorry to hear of your daughter. It can take 3-6 months for Aza to work effectively and it is SO so hard to wait. The lack of appetite and fatigue is indicative of disease activity. As is the joint pain, my son would have pains off and on too. Be sure to talk with her GI about this. Perhaps a 2nd round of prednisone would be helpful as you wait, or maybe she needs a higher dose, or different medication. Hang in there!