Parents of young teens

[Hope345]

I just found this forum today and have already met some very caring parents. Thank-you to the people who took the time to make such a helpful forum and all the caring people willing to share their story and help others going through hard times. My 13 year old daughter was diagnosed with Crohns in late January of this year. She was extremely anemic because she had been misdiagnosed for 6 months. It has been hard to believe such a beautiful happy girl could have this disease. She had a mod/severe case and was put on Prednisone right away. She had all the side effects of Prednisone and there were no other options to get the Crohns under control quickly. The symptoms of Crohns came back and she had to be put on another 6 weeks of Prednisone, along with mercaptopurine, antibiotic and asacol. She is currently getting her 5th treatment of Remicade tomorrow. Her Crohns is mild now, with some bleeding and discomfort. We are so anxious it will soon go into remission. We also removed lactose and milk fat from her diet which we believe has helped too.
She has missed half of her 7th grade year at school. She has missed some of her 8th grade year but we are hoping she will be feeling well soon. She does have some good days and bad days. With Remicade, the new concern is having a low immune system. I would appreciate any comments on how your child has handled middle school and a low immune system.
thank-you:rosette2:

 

[kimmidwife]

Hi Julie,
Welcome to the forum. My daughter is now 15 she was diagnosed four days before her 11th birthday. Middle school was rough. She missed a lot of days. The school knew her situation and worked with us. Thanks to them she was able to graduate on time. We had a psychologist who is an expert in crohns meet with them. She explained to them that when a child is ill and missing a lot of school the most important thing to do when catching her up is to give her the meat and not the potatoes. Meaning provide her with the important information and avoid the extra busywork. Caitlyn's teachers were great and really listened to that advice. They also tried not to overwhelm her with homework again making sure she got the important things down.

 

[crohnsinct]

Just sent you a war and peace pm response but managed to delete it before sending. I am just getting back from O's swim practice and have hubby and younger daughter tugging at me. I will recompose in the a.m. but looking foward to exchanging info!

 

[Jmrogers4]

Welcome to the forum. It is a great place for information and support. My son is 13 as well. He was diagnosed at 10. Does she have a 504 plan in place? This has helped when he is not feeling well and gives the teachers a "heads up". We have done the same thing as kimmidwife when he has missed a lot he only has to do the "work" and not all the little busy work. He also has some leeway on late assignments as you probably have experienced the tiredness of anemia and it was just frustrating for him some nights where he was just so tired to get his homework done.
We are not too far from you over here in Idaho. It amazes me where everybody is located from on this forum.

 

[Jmrogers4]

kimmidwife,
I have a question someone asked me that maybe you might know since your daughter was on endecort. She is asking if you can be on endecort and LDN at the same time. She thinks she finally found a GI willing to prescribe LDN but is afraid to stop the endecort. Thanks

 

[dannysmom]

Hi and welcome. My son is not diagnosed definitively with Crohn's but became ill around the same age as your daughter. He missed all of his middle school due to fatigue. The school did provide home instruction which was great. In our district, if you are out more than 2 weeks you can have tutors come to the home. The grades that count for college typically start in 9th grade (unless you are in 8th taking advanced classes) - so that eases pressure somewhat. My son also has a 504 plan in place now. Hopefully your daughter will continue to improve and not need to miss much more school.

 

[emma turner]

Hi there,
I'm 18 years old and happy to say i'm not a mother yet but as i was reading your story it has brought back so many memories and i wanted to share with you.
I was diagnosed with mild crohns disease in year 6 and from there it got worse.. i stayed in school until it came to year 10 and i missed half a year. I know it may seem helpless because as my mum tells me.. all she wants to do is be able to take the pain away for me, or 'trade places'... but thats the thing... you can't.
Seeing how worried my mum has been for me, the nights she used to get up with me and sit out side of the toilet while i was crying in pain, i can understand that you must be feeling about the same. I just wanted to say that even though you can't stop the pain... being there for your daughter or son, even being on this chat forum to ask questions and get a better understanding on what can help them is pretty incredible. Mum's honestly do more than they think they do and i couldn't have done it without mine... heck, i still can't!

I hope this lifts your spirits a little more.

 

[Tink572]

HI!
My son is 14 and also in 8th grade. He was diagnosed when he was in 3rd grade. He's been on Remicade for about a year now. He missed quite a bit of school last year due to Crohn's. Turns out he was working on a stricture that was giving him problems and had surgery 2 months ago. He's been diong really good since then and is still on Remicade every 8 weeks. He's only missed school for doctor appointments this year--no illnesses.

So far his immunity has not been an issue. He hasn't had any other illnesses since being on Remicade. (Just because I said that, he's going to come home sick today!!)

Welcome to the forum! You've found a great place!

 

[imaboveitall]

HI Julie, :heart:
I am a Julie also.

Old Violet was dx at age 10.

Last year (8th grade) she missed FIVE MONTHS, from Nov-May. She had a homebound teacher sent by the school district and a math tutor hired by me.
This year she is on pred and doing GREAT thank God. :soledance:

She missed field trips, camp, sleepovers, parties and dances. I won't pretend that isn't painful. I get nauseous with the pain when I think of her permanently altered life, and have PTSD from the period around dx when she was near death. As a mother this is the WORST, the worst. Watching them miss out, suffer, have to deal with things a child should not even be aware of...there is no sugarcoating to it. It SUCKS.


That aside, drugs CAN control it to the point where many (not all) kids lead near-normal lives.
I'd urge you to investigate Enteral Nutrition, Violet has used it since dx and was med-free and SYMPTOM FREE for the first three years on that treatment alone.
She still uses it as maintenance and shall until her growth is done at age 16.
Delayed development secondary to undernutrition is rampant in this patient population; EN circumvents this.

With love,
the other Julie :heart:

 

[DustyKat]

Hi Julie and :welcome:

Looks like I have tagged quite a few that answered here into your other post re: missing school! :lol:

I am so sorry to hear about your daughter, bless her...:hug:...I hope the Remicade continues to work well for her and she is soon into remission.

Both of my children have Crohn's and we were fortunate that the school was fully on board with us so time missed never became problematic. I know you have different systems there but the thing I found the most helpful was clear and concise communication. I kept them fully informed of what was happening and also what I expected and didn't expect, in a negative way, from them.
My two aren't on Remicade but they are both on Imuran. Neither experienced any issues with their lowered immunity whilst at school and now that they are both at university, and exposed to a much larger student population, they have continued to show no adverse effects.

Good luck hun and welcome aboard!

Dusty. xxx