Parents of Pre-Teens and Teens with IBD

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Loads of studies stating the effectiveness. I can't recall what percentage they all hover around and quite honestly depending on when the study was done the percentage changes but it worked here and for three yeas and running!
 
That sounds great! Exactly what I am finding...
crohnsinct said:
There is a lot of information out there on anti inflammatory diets as most diseases start because of inflammation somewhere in the body. However, I used Clean Cuisine (an 8 week anti inflammatory diet) written by Ivy and Dr. Andy Larson. They also have a website and facebook page. They are wonderful and encouraging people and take time to personally respond to questions about the diet etc. She has MS and has been able to control it in large part through diet. Her neurologist suggested this way of eating.

O's doc was adamant that diet wouldn't make a difference but now he can totally tell when she is off her diet. Nothing really bad happens but I imagine some values move a little and he calls us out on it. He does think that diet combined with meds makes for a great treatment and says that researchers are working on identifying types of Crohns and being able to customize diets for each type.

It takes a lot of patience and persistence but it is worth it when you see the payoff.
Click to expand...
 
I do not know what I am doing with this whole reply thing...there are so many threads! So I am posting a reply/update about my13 year old with Crohn's. First of all, YES, I think it makes a difference how old a kid is in how they deal with Crohn's. My son is so embarrassed by things that it definitely factors into the equation. His "role" in school, his identity, perse, is wrapped up in being an excellent student...so going to school without enough energy to be that person is off the table at this point in time. As for exhaustion and figuring out what is normal, and what is Crohn's, I can comment on that. My middle son is fit as a fiddle and here is what is going on with him: He stays up too late and then has trouble getting up in the morning. It seems to be his natural "schedule". He is totally "out of it" some days...especially in the morning when he is waking up. When he sleeps in, not being able to get up despite his alarm clock, he usually seems to have grown! But he can put in a full day, and he can do his schoolwork, and he can exercise without a problem. Maybe a complaint, but not a problem. He has been tested and he is in excellent health.
As for my 13 yr old... We started him on Remicade a week ago. He gets his next infusion this week. He just was getting sicker and sicker as we went from Fall to Winter. No blood in his stool that we saw, just fatigue, cramps, reflux, headaches, etc. We had his blood tested and his inflammation and Crohn's numbers were up. So I threw in the towel. The kid has been SO good about his diet, but either we haven't rid of the one thing that is causing the problem, or who knows what, but we decided it was time to try Remicade. This has been too much stress for one little boy, and seeing as stress make Crohn's worse, we saw that we were working against ourselves. I am quite hopeful that Remicade will be the key to his return to good health. We are continuing on the no corn, no wheat, organic, low carb diet, and other suggestions of the Blood Type Diet System...but we are going to allow in some foods, like some cheese every once in a while, if we can get him feeling well again on the Remicade.
 
I hope it works wonders for him SAHM. I have been in those shoes and can only say I'm glad I threw in the towel this last year and just a bit have been a different world. He is happy, healthy and the energy is there. Sure he stays up too late on occasion and pays for it the next day but he is not falling asleep in class. The fatigue is no more than any other teenager. Growth has been phenomenal (7" since starting remicade Jan. 2014) weight has gone from 4% to 50%.
I totally get it you get to the point where you just want them to feel better and the big meds don't seem as scary if they will give you your child back.
 
I think it has a good success rate .
On here alone I know only two kids that it didn't work for .
Otherwise nothing but happy success stories
It worked wonders for DS
We only switched to Humira after an allergic reaction( DS is allergic to lots of drugs and everything in between)
Since being on biologics SAHM DS has gained 36 lbs and grown 8.5 inches
Granted he is only 11
He is back at the 70. & 75% for things again
 
SAHM, we will likely be doing the same (going to a biologic), and I have a lot of hope that we'll finally see the same results as so many others.
 
I hope Remicade works for both of you kids (CarolinAlaska, SAHM). 2 years plus and working wonders for my Daughter.
 
Hello everyone! We've been a bit busy these last few months with a new GI for our 12 year old son. The first GI, the one who diagnosed him with Crohns just wasn't as I'm sorry to say smart or informative as the one our son has now........ Even though he is just as young or maybe be even younger then the last doctor he's more understanding, listens, remembers and yes takes our constructive impute with stride (learning as he goes). Unlike his young nurse who is still taking my calm, stern impute as hate rather then help. I can see it she'll come around. I tell her things I discover in hopes she won't tell the next parent the same and find they may not be as friendly as I.

But after the Yoyo effect of deciding if our son should or should not be on Remicde to bring him to remission. We finally decided and he will be starting as soon as his pre testing comes back. I am scared, my husband (ie. who is Feels Great on here) is too..............for our son, he hasn't said much. Like most things it'll be in the car on our way there or maybe even right when we get there.

I do wish he knew other kids his age with Crohns in our area but we don't know of any. Also my son is getting infused at an infusion center in our town instead of at his GI's office 1 1/2 hours away. Which is great but they told me even though they do have kids come in they've never had one as young as he is. It's an infusion center in a bone and joint center. It might be fine though? He connects well with older people. He will have his laptop and tablet to keep him busy. Also school work!!!
 
Good luck! Hope it works wonders for him. It has been a miracle drug for us after we finally made the decision a little over a year ago.
Jack has his done in the GI office but he is in a room by himself and just has his laptop to keep him busy. It would be nice if he did his homework then but he looks at as if he has to be there doing that then he shouldn't have to do homework. He looks at it as free time.
We knew of no other kids in our area with Crohn's until he went to Camp Oasis and has met several kids who he keeps in regular contact with.
 
Good Luck! Remicade has been great for my daughter.

She has her infusions at the GI's office with up to two other kids in the room and they rarely talk to each other. They either have their noses in their books or their phones or head sets on. I think at the center you describe he will probably be spoiled. The little prince. Everyone will think he is adorable and feel bad and dote on him. Tell him to eat it up while he can!
 
Good luck! A lot of doctors want the infusions done in the hospital or an infusion center. It is not uncommon. Keep us posted!
 
We will likely be following suit. We live 2.5 hours from our GI. I was worried about the logistics. Hopefully Jaedyn can get her infusions locally and not have to miss any school.
 
Carol regardless of where the infusions are located they take at least 4 hours
Without travel so school is generally missed infusion day
 
Yes, definitely have to miss at least half a day of school, if not the whole day. My girls loved the day off! It was a chance to relax, nap and watch TV! The nurses also really spoil the kids at pediatric infusion centers/hospitals.
 
O is down to a 2 1/2 hour infusion (they get faster once they get through 6 or so and now her dose has been lowered). We get the first appointment of the day (7:30 a.m.) The center is about an hour and a half away. So I usually get her back to school for a few hours of the day.
 
Grace's first infusion was 6 hours. They were worried about her past history of allergy reaction.
Now she's finishes in 2.5 hours.
 
2.5 hours would be lovely! A's infusions take 5-6 hours (if all goes well). We use that time to watch movies, relax, and play games. She actually doesn't mind it.
 
Yep miss a 1/2 day here and it's only 15 minutes away but lunch for him starts at 11:46 and it is just easier to take him from school then and get food on the way. We like afternoons then he only misses 3 periods instead of 4.

On another note Jack had a huge project for English due today which he has not been very good about getting things done ahead of time for it. He stayed up till 1:00am last night to finish and he has had no issues today because of it. In the past the stress of the project combined with a late night would have caused issues and taken days to recover from. I'm glad he is healthy enough to be able to pull an extremely late night and not pay for it more than any other teenager. (And he got 235 out of 230 points).
 
C's infusions took about 2.5 to 3 hours and since we traveled to his GI IV lab he missed the whole day.

Way to Jack, jmrogers4 I know it has to great to see all of these changes.
 
High School Struggles: Is anyone else having them? Your kids all seem superkids with amazing stories and seem to come through everything shining like some super hero. We're having a bit more of a struggle when it comes to high school.

Jaedyn has always struggled to keep up with school. She is a bright girl and catches onto concepts quickly. Problem is: she is sick so often she has a hard time keeping up and when she gets behind she starts hating school and stops trying. She struggles mainly with two aspects of school: taking notes and writing. She is a slow writer. Getting concepts from her brain onto paper takes a long time. If you ask her the same question she'll tell you orally without any problem. I will admit, I've been lax on making her do the written stuff, because I know that it would be impossible for her to keep up with it all. Now she is finishing her freshman year and I here her saying things like, "I don't think I can do ________" because I won't be able to go to college. She thinks college will be too hard for her. I don't know how to help her. I brought her home this semester halfway through the year because she was so miserable. Granted she did pull off As and Bs last semester at her private school. However, the stress seemed to be making her crohn's worse and worse. I'm glad now that she is only doing half-time school at the private school, because she has a colonoscopy coming up, starting Remicade (probably), etc. That would definitely put her over the edge.

We went last week and took a look at the public high school. My oldest daughter wants to transfer there for more opportunities for different classes. Jaedyn is not so sure. I'm not so sure! It is so scary to make changes, especially when you don't know what it is like, and when your child's health may or may not be good... They aren't taking her homeschool class credits this semester (English and Biology) and so she'd probably have to do them over (or take remedial English - which sounds like a bad word to have on your transcript...). I'm not sure what to do. I have these options: 1. continue to do what we're doing - half-time homeschool, and half-time private school (I feel her education is lacking in the English department); 2. put her back in the private school full time (very stressful, but supportive staff); 3. try public school, and hope they work with me to find a track that fits her; 4. full-time homeschooling with an accredited program that she can do at her own pace.

Thanks for any advice or encouragement you may have!
 
Oh goodness, writing is our biggest issue as well. We have actually found that the public school has more to help him out. Jack went to a private school last year (Freshman) and struggled with his health and especially in English class even though it was essentially a repeat of his 8th grade year and covered the same curriculum. (A in 8th, C in 9th).
We struggled with where to place in Accelerated English (which was the track he was on before transferring to the private school) or Regular English. His counselor was great he suggested we try Accelerated and could always drop him down if it was a problem. The first semester was a bit of a struggle and his writing was okay if I went over it and pulled more details from him and really helped him. They have a writer's block at his school now on Mondays and Wednesdays at lunch, which is essentially seniors in the AP English class go over your papers and help you with the writing. This has been amazing for us. Current grade in English A. I think his improved health has helped as well as the fatigue isn't a huge issue anymore and I think in the past he just wanted to hurry through it and get it done it so he could rest.
While he will not be doing AP in English next year, we've figured it is just not his strongest subject and that's okay.
You of course know your child best and we found visiting the high school and counselors and even the 504 manager (who happens to have Crohn's and is on humira) just made a great fit and he is happy and thriving.
 
Other thing to suggest is dragon naturally
A software program where you just speak
The program types out what you say
The difference in writing content from spoken word to trying to type it/write by hand is amazing .

Second testing for special education
Sometimes there are things going on ( not major ) that can cause issues with writing/processing -simple aids ( not a special class ) may be all that is needed .

Good luck
 
For starters my oldest daughter had average grades. Average student. Took only one or two honors courses. English (her worst subject) she took very basic level...not even college prep. Her SAT scores were dead on average for the country which in our area would be a pathetic score (very competitive). She applied and was accepted to 12 colleges and got scholarships to all but one...her first choice and the one she is attending...go figure! She was chosen for a very competitive program. 1,100 applicants and they accepted only 100. On paper she was not a candidate for the school but she tried anyway. I think what got her in was her mission work and investigation in her chosen field (she shadowed an OT for 40 hours and had a sister who underwent OT). My point...don't worry about the transcript. Her comfort with the subject matter and her growth is what is important. Colleges look at the whole individual and really look to the essay to understand the person. She will go to college if she wants!

Jae seems very intelligent and driven but really how can anyone expect her to perform at such high levels when she is not feeling well, fatigued and mal nourished. I really think when she is healed up and able to absorb all her nutrients and they feed all her systems you will probably see a very different girl.

O is in all honors with the exception of English...her worst subject. She is also in basic level...like her sister. I worry she is taking too aggressive a schedule next year and that she needs some down time to be a kid and also in the back of my head wonder, "what if she flares".

T is a nightmare when it comes to school. She has severe dyslexia and like Jae if she experiences a set back she gives up. Everything in school is a constant struggle for her and she also feels she will never go to college. She went to a private school and then public. She likes the public school better. Larger, more diverse community of learners. She isn't so obvious anymore. Lots of services. They are also amazing with the 504 and all kinds of support for her with regard to her Crohn's.

I would echo MLP's suggestion of learning testing. There could be an issue you haven't discovered. After T was dx'd we tested her sisters and guess what...Dyslexic! Every one of them. But the older girls somehow learned a way around it so if it ain't broke don't fix it.

If you are able to identify a learning difference they have to make accomodations for that just like with IBD. Maybe oral testing for non English classes etc.

Good Luck!
 
Thanks, Ladies. Do I call and set up a meeting with her counselor they assigned us to to discuss these things?
 
I would Carol. Maybe they have options you haven't thought of. When D started high school I sat down with guidance and principal and was introduced to a class that I didn't know existed. it's like. homework helper and that teacher is my go to person to gather homework when D can't get to school, and it gives her a place to catch up on concepts she might have missed. I didn't even know it was an option. Maybe the school has an alternative you don't know of. Big hugs.
 
:shifty-t:We are doing our best to be "patient", but we are waiting anxiously for our 3rd Remicade treatment. How did you survive in the mean time? My son's first infusion, he had 1 good day after. His second, 2 weeks later, he had 5 good days. Now we are waiting the 4 weeks until the 3rd infusion! tick tock tick tock. I sure hope this works! Anyone else have this happen? How many days do you think we will get after our 3rd infusion?? Thanks for your input.
 
Jack did not make the full 8 weeks after the 3rd infusion we ended up on a 6 week schedule for several infusions and had to adjust dosage at nearly each one, just couldn't get to that 8 week mark. We have finally ended up on the high end of dosage (standard is 5-10ml/kg) at 10ml/kg every 8 weeks and so far so good. So I think it takes tweaking of time/dosage until you find what works.
Hope he makes it until the next infusion without too many issues and soon can make the whole 8 weeks with no problems
 
Same here. LOTS of tweaking. In the end it took us about 6 months to experience any sort of remission. Tweaking aside, it does take a while for the drug to work. Is he on anything else to handle the inflammation while you wait for Remicade to take over?
 
It took a while for us - two infusions before she saw any improvement at all and 4 before she was actually better. Even after that it took a while to get the dose/frequency right.
Hang in there!
 
He is on Lialda. He was also on Imuran, but the doc took him off of it...it was messing with his liver. I know that a year from now, this will seem like nothing, but right now, it's like waiting for paint to dry, or a pot to boil.
 
It took DS all three infusions plus a week or two
He never made it the full 8 weeks
He only had infusions every 6.5 weeks at a higher dose
 
My son is also experiencing insomnia....His clock is definitely off, - for example, if he falls asleep at midnight, he sleeps til noon...but sometimes he finds himself up until 5 a.m. Anyone else's kids experience this?
 
Both of my teens have sleep issues. Our recent 30 day Whole30 challenge resolved this in both girls. I think it may be related to nutrition. Calm is an organic product that helped before the diet.
 
My son had a sleep study done last year. Even though he often flips his nights and days around, he's totally normal and the cause is screen time. The doctor said every once in a while he takes a bunch of teens camping for a week and they're all on good schedules when the week is over.

His cure: Light exposure during the day and none at night.
 
Samh I would have the talk to the doc about combo therapy. When my kid was on Remicade she too didn't get it to last more than 3 weeks and our doc added Methotrexate. She was already on Prednisone too. When Remicade was stopped for her Methotrexate was the bridge as she waited to get onto Humira. She is now on Imuran & Simponi as combo therapy. Sometimes 1 drug just isn't enough. Studies have shown great results for combo therapy especially with Remicade.
 
SupportiveMom is right - some kids really do need a combo of meds!
My daughter also always had to be on a combination of drugs: first Humira and MTX, Remicade and MTX, Remicade and Imuran and now Simponi and Imuran. Remicade by itself didn't help her at all. Adding MTX to it made all the difference in the world.

We also have sleep issues but they are due to joint pain. My daughter's pain management doctor recommended an app that does guided imagery and relaxation. It's called iSleepeasy. It really helps my daughter relax when she's lying awake at night and she often falls asleep listening to it.
 
Any of you catch your kids with marijuana? D decided to smoke her 1st. She said she read it helps people with Crohns and the pain. Have to say it made the issue tougher to argue. Anyone deal with this? How would you or did you deal with it?
 
My older daughter also tried marijuana. She was 18 at the time and in a lot of pain. Since she was 18, my husband and I made it very clear we disapproved and weren't going to help her if she got in some sort of trouble because of it. We also told her if she continued smoking she had to inform all her doctors since she was now an adult.

Luckily she didn't like the feeling of being high and also didn't feel like it helped much with pain, so she only smoked a couple times.

I have heard adults say on the forums that marijuana has really helped them though and have one friend with IBD who gets medical marijuana. It was a very difficult issue for us to handle because on the one hand it's illegal but on the other what if it really helps?
 
Here the laws are much more lax about it for adults, but certainly not for kids. I don't have an issue with marijuana specifically but I do for a kid, especially who hasn't stopped growing. Getting in trouble with the law is not much of a threat here for it.

To me it was a big cry for help. She just wants to not be in pain. Of course she reads too much on the net and knows adults use it for pain management. Makes sense she would want to try it too. Punishment is still being laid out, but being sent to her room isn't a punishment for her, that is where she has been most days cause she can barely get out of bed. I didn't try alcohol until I was 16, and she seems to be starting early. I think this disease has made her grow up way too fast but her naivity hasn't caught up.
 
Does she see a pain management doctor? They can be very helpful - one of my biggest regrets is not getting my girls to one earlier. There are some non-medication options that might really help - we've had a lot of success with a TENS unit.

My daughter also now sees a psychologist - that helped a LOT. It took a while to find one that dealt with kids/young adults with chronic illnesses, but it was so worth it. S is now in college and still sees her.
 
The psychologist is ok, but I don't think she found one to mesh with yet. We are on our 2nd one. I'm not sure she will stick. If she had one she meshed with I think it would help. She now has a few IBD friends she talks with, one in her 20s & finishing university and has a jpouch that I think has done the most good for her. I don't think she would tell her therapist she tried pot. If she did I doubt she would get in depth enough about it.

TENS sounds interesting. I will have to look it up. I will ask about a pain management therapist. I have been just focusing on when they can manage her crohns and find her the rights medication. I am trying to get her to tell the doc what the problems are but she isn't being as clear as she should.
 
We live in a state where it is legal for anyone over the age of 21. When my son was diagnosed at 16, he also read about the benefits.

Now, for legal reasons I will not speak anymore about my son, but I will say that it helps my stomach pain and my appetite and I believe it is a very safe drug.
 
Lenny what about growth? As an adult I completely understand and wouldn't argue benefits. Hypothetically would you worry about that with it for kid? Maybe I should take this to the marijuana subform?
 
I wish doctors had been more open about discussing this with us but at the time even medical marijuana wasn't legal in our state.
 
SupportiveMom said:
Lenny what about growth? As an adult I completely understand and wouldn't argue benefits. Hypothetically would you worry about that with it for kid? Maybe I should take this to the marijuana subform?
Click to expand...

Hypothetically speaking, a 16 year old who has little interest in food isn't going to grow as he should.

My son put on 45 lbs since September and is now 6 ft tall. He lost 15 lbs in a recent flare, but has gained back 6 lbs this month.

My son's diagnosis was a complete game changer and I'd do pretty much anything to make him feel better.

I've always liked the moto; everything in moderation. :)
 
When you look at the side effects of the meds they are already on and pain meds, pot looks like nothing in comparison. That being said I still can't justify letting her do it. My gut just says this is my line, I can't have you do it at 14. Maybe in 4 years I can let it go.

I hear you on the weight gain. Prednisone makes D gain weight normally too, but not this time so far.
 
Hi everyone. My heart goes out to all of you wonderful parents and amazing teens. As if being a teen isn't difficult enough, lets add IBD! My son R was diagnosed with Crohn's Colitis two years ago. I knew something was wrong even sooner but doctors told me everything was fine. Parents always trust your intuition...no one knows your child better than you. He is taking maximum dose of Remicade every four weeks, Methotrexate 15 mg every week and Uceris 9mg every day. I am looking to get more involved with a holistic approach and maybe food sensitivity testing which my gastro (whom I actually love) has told me is a waste of money. Any one else from NJ?
 
Welcome Rose. How old is your son?

My daughter did food sensitivity testing. We found the tests confirmed what we already knew in elimination diets. Our insurance covered it, but I know most don't. Worth checking just in case. The test ran us about $200.
 
Thank you for responding so quickly. My son just turned 17. He eats so few foods and I am so worried about him losing any more weight. My son was a solid 180 lbs, 5'10. Now he is struggling to maintain 158. I would like to avoid trial and error, if I can. I am also considering adding Turmeric.
 
Hi Rose. I am new here but wanted to say Hello. we are trying to figure things out for my son. He seems to be on the better side of Crohn's than a lot of the other kids here (Knocking wood and bracing myself!) Although, these stories ARE very familiar up to a point. The reason I chimed in is b/c you mentioned Tumeric. Go to a good health/vitamin shop and ask about it. It is supposed to be incredible for many reasons: digestion, joint pain, even depression once taken for awhile. If my son would swallow the pill I would definately add it to his repertoire. Good Luck
 
SupportiveMom said:
When you look at the side effects of the meds they are already on and pain meds, pot looks like nothing in comparison. That being said I still can't justify letting her do it. My gut just says this is my line, I can't have you do it at 14. Maybe in 4 years I can let it go.

I hear you on the weight gain. Prednisone makes D gain weight normally too, but not this time so far.
Click to expand...

14 is young, but there are strains that don't cause any high, but do offer pain relief. There are some very young kids using medical marijuana.

I have what's called essential tremor in my left hand. So far, it only shakes when I drink from a glass, so I switched to using my right hand.
Well, everytime I use marijuana, the tremor completely disappears and I can use my left hand to drink, no problem. Apparently, people with really bad cases can get medical marijuana just because they have essential tremor.
 
About once a week, my son has a harder time in the bathroom and it was on one of those days that I got him to give me the sample for the FCP. He's convinced that is going to show more inflamation because of that, but I told him that is not how the tests work. Am I correct? Or, does the fact that you had a more difficult time pooping mean you have more inflamation. It doesn't vary much from day to day, does it?
 
No the difficulty of the bm nor the consistency etc will affect the fecal calprotectin results. Calprotectin is shed from the lining of the intestine and it is either there or not and the number references how much was there. There is a good degree of variability in results from one day to the next or from one movement to the next. Further there really isn't that much evidence to suggest a higher result means worse inflammation as it is pretty individual along with everything else with this disease. From what our doc tells us they are really just looking for inflammation or not and they do look at the numbers but more from a trend standpoint.
 
I'm sorry, I'm confused. Are you saying that my son is correct? That results can vary a lot from one day to the next?
 
Consistency of stool is not a measurement of inflammation. You can have diarrhea or constipation and have inflammation. The only way you can know there is for sure inflammation is blood without having the tests needed. The absence of blood doesn't mean there is no inflammation though... Basically your poop consistency is not a measuring tool for inflammation.
 
lenny said:
I'm sorry, I'm confused. Are you saying that my son is correct? That results can vary a lot from one day to the next?
Click to expand...

Kinda sorta. How's that for definitive? There are studies that show a pretty wide swing BUT results do not usually swing widely from a nice normal no inflammation reading if say 20 to an inflammation number of 300. FC is not an exact science. The docs are typically just looking abnormal or normal and making decisions from there. Also looking for trends.

The theory behind the fluctuating numbers has to do with how much cal protection was brought out with each bm. So maybe (emphasis on maybe) first bm of the day will have a higher reading than one taken say an hour later . But this is all theory and if you are inflamed it typically will show.
 
My son's GI wants his FCP to be under 180. If the test can vary 100's of points in a single day, how can it be worth anything?

My son only goes once a day.
 
Our doc says, if you are inflamed it will be raised. Very rarely will a normal FC reading be a person who is terribly inflamed. It can happen just not likely and in that case our doc will also look to blood labs and symptoms.

Also, my theory is, if you are only going once per day not likely there will be much variability.

Bottom line is no test is 100% accurate and perfect all of the time for all of the people. They are all just tools and we do our best.
 
I knew the FCP was just a tool, but I thought it was a more informative one. If inflamation #s can vary a lot on a given day, I don't see them as being a useful tool for how my son's GI is trying to use them: Making sure my son stays at or below 180.

If my son's #s were 180 in the morning and 380 that evening, what are they? My son's treatment would differ, based on the specimen that was tested, as one would be acceptable to his GI and the other would not.
 
Yeah, I hear you Lenny. I thought the same with t's test but that is why we do them fairly regularly. At beginning every four weeks. So doc can see trend or repetitively nice low numbers. If every test out there fc is still my favorite.
 
FC fan here as well. Did one at a time of remission and it was 90. Did a couple while flaring (based on other symptoms knew he was flaring but labs were normal) and one was 395 and a couple of weeks later was 450ish so whether it was time of day we took sample or there was indeed more inflammation on that day in the long run it was decided there was inflammation and that was all that mattered.
 
They called with my son's FCP results: "Normal"
They did not tell me a specific number.

That's just with cycling from food to Peptamen. No drugs. But, he's only been on food since 3/15, so very new.
 
Last edited:
That's great Lenny! we got the same with T but she was 100% EEN. WE haven't done a repeat since adding in food. That will be in a couple of weeks. When do they want you to repeat the test again?
 
Glad to hear it, Lenny! Did your son go to any kind of special diet after the Peptamen?
 
No special diet. Mostly organic*.
This is what he had yesterday: 4 Peptamen 1.5 Vanilla, a large salad*, 3 scrambled eggs*, hummus* & crackers*, a bowl of fresh strawberries*.
 
Hi all!
I need some advice. My daughter was offered a summer job at a sleep away camp. The same camy she went to for many summers. According to her last MRE a few wells ago her disease is much improved from the steroids But she is still having terrible pain. She wants to take this job but we are both worried about whether she will be able to do it with all the pain she is having. On the one hand I really want her to do this I think it would help boost her self confidence a lot and show her that she should not let the crohn's control her life on the other hand what if she takes the job and then can't do it and they are counting on her. Once camp starts it is hard for them to replace staff.
The camp does know about her illness and they are very supportive. In fact they constructed a job for her that would not be to stressful.
What do you think?
 
DO IT!
They all know about her health and made a job that was tailored for her....take it.
I think all us parents hope that our kids could work for people like that.

The worry will be there no matter what she does with her summer.
You've done such a good job as a mother that I'm sure she'll be just fine if something pops up.

HUGS
 
I would let her decide - does she think she can handle it in pain?

It's great that the camp understands and is so accommodating. One of the considerations might be - is she far away from home? If something happens, is there a good hospital nearby?

Unfortunately, my daughter has had to give up several jobs/opportunities (including being a camp counselor!) because of just being too unwell or in too much pain. It's really just the worst.

I really hope she feels well enough to do it!
 
How far away is the camp? Can you get there when needed? If she wasn't relying on steroids I would say go, but still on steroids & pain I would be hesitant for a whole summer.
 
We will be about an hour and a half away from the camp. I think the closest hospital is an hour in the opposite direction from us.
My biggest worry is her being able to handle this pain. Today she didn't even want to get out of bed. I have been giving her tramadol but now she says it is not helping. Really hoping we can get in with this new pediatric pain management doctor. Waiting to hear about a referral.
 
Yeah, I guess there is a difference between then tailoring a job for her when she is doing well and her entering the job in an already sub par place. It sounds like she will go to this camp either way and it is just a matter of whether or not she wants to take the job. So sounds more like you jus don't want to leave them in a lurch should she not be able to perform the duties. How long can they wait for an answer? Can you put off the decision until her next infusion to see if the Entyvio kicks in?

If she has to pass this time, there will be other chances. Perhaps even at this camp. I think they will appreciate the honesty and your consideration of their position and if you come back next year and say, "good to go" they will really value that and have confidence in offering her another position.
 
Crohns instinct,
She will only go if she works there. She is to old to be a camper. The director said we can let him know after the next infusion but I don't know if that will help because then for a week after she feels terrible. I just don't know what to do. On the one hand I think this would be great for her. On the other I am very nervous.
 
J is taking her first job working at a camp. Fortunately they know her well because my husband works there too. I am nervous about the long hours and stress on her, nights in a cabin, etc, but I feel it is better to let her try. She worked there as a volunteer last weekend and loved it. She is not doing quite as roughly as your daughter, however. She isn't in remission, though, and I'm hoping she gets put on Remicade by then and has a big turnaround. I hope the same for your daughter too.
 
Last edited:
I was going to write, "I'd love to be part of the group." Manners at all times please! I forgot for a millisecond that this is really a group that none of us really want to join. We all wish we didn't have the connection. As for me, I am so grateful to have the support and kindness of people who get it, really, like no one else can.
 
Hi everyone! New to this. I'm not even sure if I'm posting in the right forum? I have a 13 year old daughter who was diagnosed 1year ago with crohns. She was on prednisone entocort and 6 mp. She has not grown at all and is losing weight. She also is becoming more anemic. The dr gave us 2 options. Biologics or enteral therapy. We have chosen to try enteral therapy. Any advice would be helpful! Should we have her just drink the formula or try a nasogastric tube? Any parents with success stories??
 
My son drank the formula but I will say it was kind of a pain since you have to have so many a day at the time it was 8-9 so he was basically having to drink 1 about every 2 hours and if we got off from that timing it messed the whole day up. Initially he had a huge issue with taste and it would take him nearly 2 hours to gag one down. He literally stood over the sink with a drink and a glass of water, would take a sip of the drink a big gulp of water and gag. It was exhausting! After about a week he could suck one down pretty fast so it was just timetable at that point. We would probably go NG tube if we ever have to do it again.
As far as the the not growing and biologic vs. EN therapy our experience was we did the EN therapy hoping not to go the biologics route but as soon as we added food back in inflammation came back and had to go the remicade route. For us remicade has been a miracle, he has been on it for a year and a half now, started out at 5'1" (14 1/2 y.o) he is now somewhere between 5'9"-5'10" and still growing.
Hope the EN does the trick and gets her to remission. Will she continue with the 6MP while on it?
 
Hi, jenni92475, welcome to the group.

My son [ 14 ] has done enteral therapy 3/4 times. It is a good way to allow the bowel to recover. I am in the UK and we use Modulen here, not sure if it is the same where you are? Josh has drunk the Modulen, this gives 2000 calories a day and gives all nutrients needed. It can be tough drinking it as it is a large volume over the day, but usually after a week Josh just gets on with it. Because it gives all calories they should never feel hungry. The hardest part sometimes is not physically chewing something. But it is worth keeping going.
He has also had modulen via an NG tube. This is an easier way as they don't have to drink it, but more noticeable to others due to the tube being in place. It will depend on how your daughter feels about this.

You could try the other forums on here Parents of Kids with IBD. You will get lots of help there also. Good luck x
 
Jmrogers4 said:
My son drank the formula but I will say it was kind of a pain since you have to have so many a day at the time it was 8-9 so he was basically having to drink 1 about every 2 hours and if we got off from that timing it messed the whole day up. Initially he had a huge issue with taste and it would take him nearly 2 hours to gag one down. He literally stood over the sink with a drink and a glass of water, would take a sip of the drink a big gulp of water and gag. It was exhausting! After about a week he could suck one down pretty fast so it was just timetable at that point. We would probably go NG tube if we ever have to do it again.
As far as the the not growing and biologic vs. EN therapy our experience was we did the EN therapy hoping not to go the biologics route but as soon as we added food back in inflammation came back and had to go the remicade route. For us remicade has been a miracle, he has been on it for a year and a half now, started out at 5'1" (14 1/2 y.o) he is now somewhere between 5'9"-5'10" and still growing.
Hope the EN does the trick and gets her to remission. Will she continue with the 6MP while on it?
Click to expand...

yes she will stay on the 6mp. I think we will have the same issues with her drinking the formula. So the ng tube will always stay in? or does she put it in only when you need to? My dr mentioned a feeding tube but it sounded like it was a port put in her stomach?
 
Many of the kiddos put the tube in at night and pull it out in the morning but it can also be left in if she doesn't have an issue with it being in all the time. There is a great video by a young girl on youtube putting in the tube.
A few different kinds of feeding tubes, NG is a feeding tube but there is also J-Tube which is port in stomach although I think most unless they are really young go for NG tube first.
 
I also posted on your other thread but both of my girls drank their formula with no real issue BUT they did Boost and Ensure and they are the most palatable ones. They do feel normal hunger when it is time for their next shake, just like regular meals and eating but the shake takes care of that.

Lots of suggestions:

Make is super cold (tastes better)
Small opening so you don't smell it as much
Use a straw because it shoots past most of the taste buds that way

Don't focus on the 6 or 8 weeks. I presented it t both of my girls as, "let's see if you could do one shake", then it was let's see if you could do a day, etc. EEN is not an all or nothing deal. You could try and if it is truly so awful she can't continue, you could always opt for the biologics. It helped my girls to know they had an escape clause anytime they wanted to call it quits. Before they knew it, they were feeling better and that was all the motivation they needed. Biologics however are an all or nothing. Once you sign up to use them, you can't willy nilly change your mind and try something else. The reason is because once you stop the body builds antibodies to them and you may not be able to go back on.
 
jenni92475 said:
yes she will stay on the 6mp. I think we will have the same issues with her drinking the formula. So the ng tube will always stay in? or does she put it in only when you need to? My dr mentioned a feeding tube but it sounded like it was a port put in her stomach?
Click to expand...

The port in the stomach is called a gtube. Theirs different types and is usually used in long term case ( but not always).
Most GI's that I've heard about start with n-g tubes and will than go to g-tubes if it's needed for a longer period of time.
My dd has a gtube placed because she was/ is so young and still have to have extra formula to thrive at her potential.
She drinks kids Boost and can do most of it by mouth but when her stomach flares she gets it thru her tube.
We are big fans of EN, she's done it for 3 years( of and on). She is also on Remicade, Mtx and sulfasalazine.
 
:ghug: I hope this photo uploaded...it is a picture of my son on a relaxing two hour bike ride with his Dad on Prince Edward Island. They took a trip together this weekend. Was he exhausted afterwards I asked? Nope. He just wanted a steak! What is working for him? Being Gluten and Dairy free, focussing on meat and veggies, and being on Remicade. He had his 4th infusion a few weeks ago. It has been a rough road, and I thought I'd never see this. He is coming into his own and this picture of him practicing riding hands free just says it all. My heart is soaring. Sending you hope and prayers for a healthy future for all of our kids!
 

Attachments

  • Adambike in PEI.jpg
    Adambike in PEI.jpg
    183.5 KB
Last night was my non crohnie kid's 16th birthday. We had a fire & cooked smores with the neighborhood kids. (20 teens!) Somewhere in this D started talking about her surgery. The kids were so cool! asking questions, wanted to see her ostomy sample bag, wanted to know about how she 'poops'. She even gave them a refresher digestive lesson. They were all so accepting I know now D has a ton of support. I was so proud she felt she could share so much and feel comfortable about it!
 

Similar threads

M
What if we could genetically test for IBD carrier status?
Replies
5
Views
2K
Scipio
Scipio
G
My teenage son has IBD
Replies
24
Views
4K
goldberry
G
M
No Symptoms - ulcer in terminal ileum
Replies
2
Views
5K
ronroush7
ronroush7
M
Not diagnosed Yet
Replies
3
Views
1K
ronroush7
ronroush7
L
Parents of kids/teens with Crohns in USA - Market Research
Replies
4
Views
10K
lila.mann
L

Latest posts

Back
Top