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CrohnieMom

CrohnieMom

Joined
Sep 3, 2015
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7
My 15 year old daughter was diagnosed in March with Crohn's. She is much better now than when first diagnosed, but we are still struggling to learn what normal is.

The second half of last school year when she was really sick, she was placed on hospital homebound and did classes from home. Now they say she is under control and she was excited to start 10th grade last week where she actually goes to school and sees her friends. The excitement didn't last long, because as of today she has only been able to attend 3 full days out of the last 2 weeks.

On the first day back, they mistakenly put her back in 9th grade and gave her regular classes rather than her AP classes, which in addition to the nervousness of going back to school after being sick caused her to have her first panic attack at school. We have since got her schedule straightened out.

I have brought letters from her doctor and they are on file with her guidance counselor and the school nurse and she also has a copy in her backpack, stating that she must be able to go to the bathroom anytime she feels necessary along with a few other requirements. Her teacher's are all aware of her condition and seem helpful. But we didn't expect her to miss this much in just the first 2 weeks.

Her specialists are an hour away so when she has an appointment, she misses a whole day. That accounts for 2 missing days so far and she has an MRE and another doctor appointment next week she will miss school for. She developed mouth sores again for the first time since being on treatment and her stomach gave her problems for a couple of days then she felt better went back for one day and now she has the back-to-school-crud-bug, a nasty head cold, because her immune system is shot from the 6mp. She almost had another panic attack last night because I think it is just too much for her to deal with. She wants so bad to have a somewhat normal high school life, but it seems like she never feels good even though they say it is under control. When I voice my concerns to the GI, he just says that "it is going to be normal that she gets mouth sores every now and then and that her stomach bothers her sometimes and that she is fatigued." Well how does she get used to this rollercoaster especially at her age? She feels so overwhelmed sometimes and just cries and cries and I don't know what to say because although I sympathize greatly I don't know what she's going through.

Anyway, now she is behind in school and I am trying to get advice on how to manage it so she doesn't fail. After losing elective credits last year, she doesn't have any room to fail a class and graduate on time no matter what the reason. Before January of this year, she had never been sick and was an active softball player which is one reason I think it is so hard for her to deal with it all. Any advice is greatly appreciated!
 
Ask for a 504, she is covered under the americans with disabilities act. We have a couple of threads on here with lots of information on it.
She shouldn't be having symptoms of crohn's (mouth sores, fatigue, etc) if the medicine is doing its job. How are her labs? ESR? CRP? Although I don't count on them as they don't reflect what is truly going on with my son. Are they a good indicator for her? What about a fecal calprotectin?
We struggled for years with lack of growth thinking things were good and under control crohn's wise but they weren't baseball, sports were somewhat of a struggle. For us Imuran (sister drug to 6MP) just wasn't strong enough. He started remicade about a year and 1/2 ago and the change has been amazing. No crohn's symptoms, growth has been off the charts, he's gone from 5'1" to 5'10". No more fatigue. He takes a zero hour class and works out everyday after school, comes home does homework and is fine.
Second opinions are great, I know many on here have had them done. Keep pushing and trust your mommy gut. Although some do continue to struggle so many more are out enjoying life and not on here for that reason.
 
If your daughter's disease is well controlled then she shouldn't be having these symptoms. My daughter is in high school, takes AP classes is on cross country, winter track and spring track. After track practice goes to two hours of swim team practice.

How does your doc define "controlled" I would definitely call on this as it doesn't sound like she is controlled to me but if she is (evidenced by blood labs, fecal testing and imaging) then perhaps you are dealing with a secondary dx of IBS or some sort of stress/anxiety related issues. Stress can wreck havoc on a body. However before I accepted that, I would want good solid proof the IBD was under control.

:ghug:
 
I don't know what a 504 is. I will have to find the threads and learn about this!

Her CRP has been elevated the last couple of months. The fecal calprotectin showed her under good control. The GI sent us back to the Rheumy because in the beginning she had a lot of joint swelling and pain (which she hasn't had problems with since finishing the Prednisone in May), the Rheumy said that everything was good from the rheumatoid and arthritis side of things. So they are not sure where the inflammation actually is. The GI has oredered another MRE next week and said that if that is ok and since she seems to be under good control, that he is not too worried about the CRP right now. She did get toxic on the 6mp a couple of weeks ago and had gotten real sick again for about a week until they stopped it for a few days and now decreased her dose, which is why I think she got the mouth sores again.

She also has a dermatological condition called hidranitis suppurativa, which the Dermatologist says isn't related to Crohn's but more of a hormone problem, but I have done research and found that the American Academy of Dermatologists said that Crohn's is a related disease and that it can be cause by an overreaction of the immune system. The reason I am saying this is because there's no cure for that either only prevention and the Dermatologist said that the long term antibiotics they usually put people on are hard on the stomach especially for a person with Crohn's and recommended the alternative treatment of Humira which would treat both conditions. The GI wants to wait on changing her to Humira right now unless her Crohn's gets worse. It seems like she just has so much going on. They all recommend her losing weight (which she gained 30lbs from the 3 months of prednisone), but I don't know how to help her lose weight when she barely eats anything as it is. She could exercise more, but it's hard because she doesn't feel good.

I have thought about a second opinion, but she goes to Nemours which is supposed to be one of the best and I don't want to lose that doctor if we didn't like the new one.
 
Oh yeah, 504's are a must and work very well to support the kids and lessen their stress.

You shouldn't lose your doc by getting a second opinion. Most good docs would support that effort and welcome a second set of eyes.

I think the MRE is a great idea and hope you get some solid answers that help you get your girls back on track.

She is dealing with a lot. Have you thought of finding a psychologist who specializes in kids with chronic conditions? This might help her deal with the setbacks, stress, worry etc.
 
I would think if they decreased the dosage of 6MP that it may not be in theraputic range anymore so therefore not controlling the disease.
We went for many years on the assumption that we were keeping the biologics in "our back pocket" for when he really needed them but really he needed them all along and hindsight being 20/20 I wish we would have started a couple of years early.
Most docs are happy for 2nd opinion or file review CHOP has a fantastic pediatric GI department.
Sometimes you have to give an extra push. My son's GI says he's happy I kept pushing because he sees so many kids that he would have just assumed my kid was meant to be small but I knew we were missing something (and even if we weren't I wanted to be sure that we weren't). He comments know that "maybe he did need a biologic all along" calls him the poster child for remicade.
As for the 504 it basically lays out accommodations that allow her to be productive and definitely for my child at least reduced the stress (no tardies, anytime bathroom access, can use staff bathrooms, lenient absences, extra set of books at home if he needs them, stop the time testing, snacks, drinks throughout the day, he can still play in sports even if he has been absent that day)
I would imagine that the weight would drop once the prednisone is stopped especially if she is not eating that is what happened with my son he put weight back on with prednisone and dropped it once he stopped and didn't gain any weight for 3+ years.
Hope the MRE gives you more answers.
 
They decresed the 6MP because her level was toxic, almost twice the therapeutic level.

I will definitely be contacting the school about the 504. I think I will also be looking into a second opinion, because now that you all have mentioned it and my daughter also had been asking me about looking into another doctor for the past couple of months, my gut is telling me that maybe it's not a bad idea. We are located in Central Florida so CHOP wouldn't work for us, but there are 3 children's hospitals in Orlando so I will be looking into the other 2. I am also looking into to getting her some kind of counselling because the stress is getting to her and like I said she just had her first panic attack last week and she goes through periods of just crying. She has never had anxiety issues in the past, but I think it is just building and building. Thanks again! I'm glad your kids are feeling well and I really hope I can get my girl to that point too!
 
My daughter sees a psychologist who actually works in the IBD clinic and specializes in kids with chronic illnesses. She really really did not want to see a psychologist and we had many fights about it. Finally her GI insisted that she go and luckily M listens to her. It has made all the difference in the world - in fact M now says "why didn't you make me go sooner, Mom?!" :ybatty:

It took us a while to find the right kind of psychologist - she had previously seen two others who just weren't the right fit. It also took her a while to open up and for it to really help.

It does seem like your daughter's disease could be under better control, but while you're waiting for that to happen, a psychologist could help her deal with the stresses of school.

CCFA has a 504 template that might be helpful: http://www.ccfa.org/resources/template-section-504-plan.html

Hang in there:ghug:
 
Welcome to the forum, but sorry you are going through such a hard time right now. I hope that MRE will shed some light on your daughter's situation and whatever changes in treatment are needed work quickly. There's no shame in a 2nd opinion, and certainly no shame in seeing a psych. I've only ever had one panic attack (when my son was in the ER being dx'd with CD), but it is a scary experience. I hope you get some answers soon!
 
Crohniemom,
It definitely sounds like you need a second opinion. CHOP is often willing to do a chart review without you actually going there. We are also in Florida. We traveled to CHOP for a second opinion.
 
So here is an update. My daughter's MRE showed inflammation had decreased in her stomach and the GI did another fecal calprotectin which was good also. She was still feeling nauseous and having stomach pain, so he gave her an anti-depressant to use for pain called Amitriptyline and Bentyl. The Amitriptyline didn't help much with the stomach pain, but did stop her panic attacks. The Bentyl seems to help the best, but knocks her out for a couple of hours. She is also now seeing a psychologist that specializes in kids with chronic illness.

She was excited because once they put her on these meds, she made it a whole week to school.... and then after a that full week she came home with knee pain and sure enough her knee, calf and ankle were swollen again. Her rheumatologist had left for another state so we are currently waiting for a referral to a new one. In the meantime her GI put her back on prednisone for a month and went ahead and changed her to Humira. She got her 1st injections last week. She has now missed almost a month of school. The leg swelling and pain comes and goes, from intense to manageable. She was starting to feel manageable and went to school for 1 day this week and came home to her leg, knee-down looking like a balloon again.

We have had a hard time getting the teachers to send her work to do from home, only 3 out 7 sent work. The guidance counselor has been amazing. We have a 504 plan meeting scheduled on Nov. 4th. I have printed out the template from CCFA, but was wondering if anyone had any suggestions that they consider a must have.
 
I agree - if she has been diagnosed with arthritis, definitely put that on the 504. If she hasn't yet, your GI can call it Crohn's related joint pain and put similar accommodations on her forms. Once you see the rheumatologist, then you can change it to JIA/JSpA, depending on what's she's diagnosed with.

Both my girls have arthritis and were diagnosed in middle school/high school. Some of their accommodations were:
Breaks in exams and classes to get up and walk around (they get stiff after sitting for a long time)
Use of computer in classes and for exams (for hand/wrist arthritis)
Exemption/modified gym class if necessary
Study hall in the morning, so that if they were stiff and had to miss the first period, they didn't miss much (this happened a lot!!)
Excused absences for medical stuff (appointments, infusions, bad days)
Use of an elevator in school if they need it
Extensions on assignments if necessary

(Did I miss anything for arthritis- paging Clash and my little penguin)

The arthritis foundation website may have a good template that could help.

Additionally, you will need to get separate accommodations for standardized testing like the SAT and AP's. That needs to be done well in advance of the test - at least 6 weeks I believe. Your daughter's guidance counselor should be able to help her with that.

So glad your daughter is doing better while seeing a psychologist. It made a HUGE difference for my daughter but it does take time to see progress.

Hope Humira works like a miracle for her!
 
1. Student will have free access to bathroom as needed, without penalty. This may include using the restroom between classes and not being penalized with a tardy.

2. Student will be allowed frequent snacks/nutritional supplements throughout the day as needed.

3. Extended time to turn in assignments, as negotiated between teacher, parent and student.

4. Shortened assignments as appropriate~determined by each teacher. (for example his math teacher might have him do first 3-5 problems instead of 30 just enough to show understanding of concept).

5. Stop the clock testing.

These have been a big one for us, we also have an attendance letter from his GI basically stating the Crohn's is a recurrent disease that can hit without warning and to excuse his absences. Being in high school they generally need a doctor's note to excuse absences.
 
My son spent a lot of time on independent study through a flex school so a 504 wasn't as important. He did have one at the military prep school he was at when dxed. It followed the CCFA template and since we didn't have a joint dx at the time it didn't include much for that.

He just recently set his accommodations up at college and I tagged along. It was hard because you are excluded from the interview and I'm so used to taking control and laying it all out for him. He did great though and came up with some joint things that I had never thought of.

He has permission for heat\ice packs in class. He wrists become more aggravated when writing as opposed to typing so his laptop is allowed in all classes (you'd think this was the norm anyway but one class he's in this semester doesnt allow them). He also specified 3 people for peer notes for if an absence occurs. Originally he chose 1 but that guy had accommodations for heart problems so although they do help each other out he chose two more that have no accomadations. There were more but I will have to get him to refresh my memory.
 
Thank you everyone for the suggestions! Clash, I bet it was hard not being the one to take charge because we are so used to doing it for them, but I'm glad he did a great job on his own!

She does not have an arthritis diagnosis yet, but she always had joint problems more than GI problems. Her rheumatologist left the state along with his wife in the same department leaving only 1 rheumatologist at the hospital she uses for all her specialists. This has been a nightmare because we have been given the run around trying to get her an appointment. She is now scheduled for early December, mind you she has been basically bed bound since Oct. 1st. Her GI put her on prednisone trying to help, but he is not a rheumatologist. I tried calling her pediatrician for a referral to a new rheumatologist, but again it will be 1 - 2 months to get her in. It's SO frustrating. I took her to the ER a couple of weeks ago and all they did was give her a prescription for pain pills, that are almost gone and she is still in pain. I hope the Humira works and soon!

BTW, how do you add the lists of meds I see under people's posts?
 
For pain - can you get her to a pain management doctor? They might have some suggestions. We use a lot of heat (heating pads, electric and microwaveable), ice and a Tens unit (which a pain management doctor can get for you). Swimming helps (and if she can't swim, even just being in the water helps my girls).

A pain management doctor would also be able to prescribe pain meds, if they are necessary. Typically kids are given Tramadol first and it's to be used as infrequently as possible.

Voltaren gel - Voltaren is an NSAID and typically NSAIDs aren't allowed with IBD, though they work very well for arthritis. My younger daughter's arthritis is bad enough that she is allowed to take an NSAID even though she has IBD (it took a lot of trial and error to find one that worked for her joints and didn't bother her stomach too much). You can check with your GI if your daughter can take an NSAID, even if it's only for a few days.

Otherwise, if you use Voltaren gel, much less is absorbed systemically and it won't affect her gut really, but it still will help the joints. We use it on my daughter's knee, heels and elbows. Occasionally on her back.

If she does have arthritis, hopefully the Humira will help soon. I know how hard it is to see pediatric rheumatologists - we've also had to wait months for a new patient appt. Hang in there!
 
Everyone has given great advice but one point to add, if your daughters high school will let her participate in the grad activities without all the credits I would worry too much about graduating "on time". It's not the end of the world to take an extra semester of online or distance learning classes is she really needs to cut back on school. I know with university I was worried about the same thing but putting it into perspective will 6 months make a huge difference, likely not.

Again double check your options. You may be able to get a 504 with reduced course load as an accommodation then do an extra semester of either distance learning, homeschooling or online classes. If she can't make it through (which hopefully treatment will help) it may be an option.
 
We were able to get in with the rheumataologist at our current practice today and she did say that my daughter has Crohn's related arthritis. She also has chronic regional pain syndrome, from her knee hurting for so long she hasn't used it much which has caused swelling in her leg and it to change color slightly. She will need to go to physical therapy and the Humira is supposed to take care of it. But now I know to add the arthritis to the 504 plan.

Is it just me or do the docs sometimes make you feel like your crazy? I know they have hundreds of patients and see this stuff all the time, but I think sometimes they forget we only have 1 patient and most of this stuff is completely new to us. When we see our kids in pain, we just want to "fix" them. Just a thought.
 
Your poor kiddo :(. I hate that these kids have to deal with so many problems.

My daughter has a pain amplification syndrome which is very similar to chronic regional pain syndrome. She's actually just going to do a pediatric pain rehab program to get the pain under control. There's going be a lot of PT, OT, aqua therapy etc.

I hope PT will help your daughter. Humira should help the arthritis - I know it worked like magic for both my girls. Some kids feel better immediately, and others, like both my daughters, take a few months.

Ice, heat (we got these for my daughters: http://www.warmbuddy.com), a Tens unit might all help while you're waiting. Thermacare wraps can help with knee and back pain. A knee brace may also help.

If she continues to be in a lot of pain, I'd ask for a referral to pain management.

Arthritis Foundation 504 template: http://www.kidsgetarthritistoo.org/...-effective-plan/sample-504-accommodations.php

Good luck!
 

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