5yo Son Diagnosed 1/20/21

Yes, we are working on the 504. He's only in nursery school, so not sure how any of this is gonna work. Right now, he would be fine, but I know we have to prepare for the days when he has issues.
 
Preschool (pre -kindergarten) ?
Or kindergarten?
Most kindergarten class rooms have a restroom in the class just in case for regular students
But some enforce rules more than others
My kiddo started to get sick in first grade and was dx at the beginning of second grade
We found it’s better to put everything in the 504 in the beginning
Middle school and high school -the schools push back more
So much easier to put things in place before you need them
Especially absence policies were the worst
 
What does he hate about the Zofran?

He tends to lose his appetite a bit for a day or say after the methotrexate, and would really like to see if it is possible to stop it before school starts. In the pre pandemic world, I may not be as worried. We are due for a checkup and Remicade next Weds.
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You may be able to reduce MTX. That's something you could ask about. But they may not want to just yet since he hasn't been on Remicade or MTX very long (I know 6 months seems long, but it really isn't!). In terms of appetite, is it because he's nauseous? Or is he just not hungry? You may have to experiment with different foods to figure out what works best. My older daughter, for example, tends to eat pretty bland food the day after MTX - things like pasta, toast, scrambled eggs etc. She gets a bit nauseous the day after MTX and over the years has figured out what works for her. She does find Zofran helps her with nausea - she usually takes it before she eats once or twice the day after MTX. Increasing folic acid can also help with side effects.
 
Maya142 said:
What does he hate about the Zofran?


You may be able to reduce MTX. That's something you could ask about. But they may not want to just yet since he hasn't been on Remicade or MTX very long (I know 6 months seems long, but it really isn't!). In terms of appetite, is it because he's nauseous? Or is he just not hungry? You may have to experiment with different foods to figure out what works best. My older daughter, for example, tends to eat pretty bland food the day after MTX - things like pasta, toast, scrambled eggs etc. She gets a bit nauseous the day after MTX and over the years has figured out what works for her. She does find Zofran helps her with nausea - she usually takes it before she eats once or twice the day after MTX. Increasing folic acid can also help with side effects.
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He hates the taste of the Zofran. He is a picky eater, and I go above and beyond. Was eating eggs, now has no interest. Peeled Honeycrisp apple slices are his favorite. Also likes will eat oatmeal. Was doing shakes for a while, got sick of them. Got into Macrobars recently, which is a good addition. It's just we get on a roll, then it seems to stop for a day or so after the methotrexate.
 
Ask Gi
There are many different shakes out there
Even ones with less than optimal ingredients are good for growth /weight gain in kids
Calories are calories
We have Ds a pass in super nutrition
Pediasure
Kids boost
Neocate splash
Resource breeze
Some Gi approve carnation instant breakfast or slim fast /special k
Nothing in them is diet
So if they are not replacing meals
Too much oatmeal causes Ds issues as do too much fiber foods (apples /carrots etc ..)
So it may be a build up to speak irritating things
Ds gets nausea with mtx but does not take zofran
He said it’s not worth it
So he doesn’t take Zofran

easy to digest things
Rice
Potatoes
Plain chicken
Baked fries
Low fiber bread

veggies are puréed in homemade soaps
Simple leeks potatoes salt and veggie stock
Abd add in
He is five
That alone makes kids picky ;)
 
Ya, we may attempt MTX without zofran this week. He only got sick one time, and that was the first day he got it, and it was during a Remicade infusion which was a few hours later.
 
I was going to ask how long he was on Mtx before you added the Zofran. The reason being both my girls got really nauseous on Zofran. I swore it was like the Zofran made them worse than just plain Mtx but thought I was likely crazy. Sure enough, Zofran apparently has an artificial sweetener in it (I forget but maybe aspartame) and my girls and it turns out I as well do not have enough of a certain enzyme to break down phenylalanine properly and the aspartame makes us very sick. We don't actually have PKU but close enough that when we stopped the Zofran it was so much easier for my girls.
 
You can get Zofran as a pill - not the kind that dissolves. My daughter was actually given that first. To be honest, both my daughters have preferred the kind that disintegrates (though I asked my daughter and she says it's a little bitter but doesn't bother her at all) - they find it works better. But if he hates it and still needs it, I'd try the regular pill. You can teach little kids to swallow pills by practicing with m&ms and mini m&ms.
But lots of kids can handle MTX without Zofran - you could try that too.
 
My daughter also doesn't like the taste of zofran. (I didn't realize that you can get it as a pill, Maya.) We just put it in a gelatin capsule and she swallows it that way. It doesn't work as fast as when you let it dissolve under your tongue, so we give it a couple hours before the shot.
 
I'm in a bit of a bad spiral. L is doing good, 1 poo a day, no symptoms, great energy. We continue on Remicade monthly and Methotrexate weekly, and I continue to google and read to soothe my fears. It feel like this is all too good to be true, and the meds will get us some how. I made the mistake of actually reading the detailed Remicade side effects, and also was reading this study. Was really the first time I saw a negative outcome possibility with methotrexate dual therapy. and I know its a JIA study, and they most likely had higher dosing.

I just get in this really bad way that the worst possible scenario will happen to us. I cried in therapy a lot yesterday, just hate all of this.

Development of neoplasms in pediatric patients with rheumatic disease exposed to anti-tumor necrosis factor therapies: a single Centre retrospective study | Pediatric Rheumatology | Full Text (biomedcentral.com)
 
Oh no! Stop reading! Try to enjoy the good days and get your energy back. There will likely be a few bad days, meds sometimes fail and you will need your energy to get through those days.

Honestly, I have been on this forum for 10 years now and have never ever seen any serious outcomes from Remicade. It is the oldest and most studied biologic. When you translate the risks to real numbers they are so so small. We even had a member with a daughter who had cancer and later developed IBD and the docs still put her on Remicade or maybe another biologic...I forget.

Don't read studies that we don't have the medical expertise to interpret. If the studies scare you, show it to your physician and ask them to explain what it means to you. That study was single center and retrospective study. Those kids were on other meds also. They can't prove cause.

I am so glad you are still seeing your therapist. This is important because honestly the biggest risk with this disease that I have seen is mental health so seeing someone to help you process all this info and what is happening is great.
 
Second
Stopping reading
You didn’t read about infant Tylenol or amoxicillin when you kiddo needed those
And yes they too can have scary outcomes
Putting your child in a car to drive to the store
Yep more scary what if outcomes

bad things can happen
But quality of life is there now
Today
He is doing so well today
That is all we can hope for
For today to be great
And when your 5 that’s just playing with your LEGO’s or cars ,building forts and exploring the backyard
Your there to make today great
Enjoy them
Meds are working
Talk to your therapist and STOP READING studies
Leave that job to the docs
If you need to change meds then read
Otherwise you do the parent thing
And Gi does theirs
Enjoy life
 
I mourn the simplicity, and the illusion of safety that proceeded all of this, including COVID. I struggle with the lifelong aspect of being medicated. My dad dying as I was sitting the hospital watching L get a blood transfusion, when 2 weeks prior we were playing football in the yard..it just continues to drop my jaw on a daily basis.

I was as happy as I have ever been last year. L is like my live in best friend, and getting to introduce him to stuff I love is the greatest thing I have ever experienced. It feels like that is all in question now. I have to somehow find a way to get past that, and I am failing. In front of him I am good.

And I definitely try to have self awareness regarding other daily life risks that we ignore, its just this this one isnt one everyone else has to deal with..it just pisses me off.
 
It does take time to adjust. You are grieving - grieving the life you expected your son to have. That's normal. It will take you time to process everything. But live in the present! Your son is doing well! He's happy! He's 5 and he probably loves everything you introduce him too. Crohn's won't take that away. You'll still introduce him to every video game or sport or hobby you want to. Plenty of kids with IBD live fairly normal lives. There are going to be periods of time when you don't even have think about Crohn's - just an infusion every 4 weeks.

But it does take time to adjust to a "new normal." That doesn't mean it's a "bad normal" - it's just different. Your son will still grow up to be a wonderful kid. He will have some additional challenges to deal with but from what I've seen, being on these forums for 8 years or so, is that most kids are more resilient, determined and compassionate because they have dealt with Crohn's. Of course we all wish they didn't have to deal with this, but what you'll see as your child gets older is that all his peers will have something or the other to deal with that is difficult. And right now, he's doing WELL. Focus on that.

The chances of cancer are tiny. My daughters both have arthritis so I have spent a LOT of time in the rheumatology world. Most pediatric rheumatologists say that the cancer risk comes from uncontrolled inflammation and having an immune system that does not function properly - not the anti-TNFs. We have been told that the absolute best thing we could do for our kids is to keep them on biologics - it prevents disease progression and unchecked inflammation which is much more likely to lead to cancer than the meds.

From that study, what I see is that the kids who got cancer were on MANY different medications. Azathioprine has a higher cancer risk than MTX or anti-TNFs. I think that is also true of Cyclosporine, Tacro, Cyclophosphamide and Thalidomide. Those are all strong immunosuppressants that are riskier than Remicade and MTX. So honestly, I wouldn't worry based on that study - there are so many variables. Just enjoy your son!!
 
I really understand what you are saying and just wanted to post to say thinking of you and to stay hopeful. In my case it was me that was suddenly very sick with Crohn’s when my son was a baby so I just disappeared out of his life for 3 weeks when he was not even a year old, fighting for my life in hospital while he was suddenly not getting breastfed any more and wondering what on earth happened to Mummy. I was pretty traumatised after and full of sadness for the life I had lost where I was fit and healthy and capable and fearful for what might happen next both in terms of me not being able to do things and whether I have passed it on to him. What has helped has been trying to focus on the here and now, so for example right now I have found a way of making turmeric latte that actually tastes nice and I am soon off to comfy bed in my house, not a hospital, and my little boy is asleep and is warm and dry and cuddling his favourite dinosaur. So life is okay. And we will deal with tomorrow tomorrow.
I remember one night when I was a few weeks back from hospital and able to pick my baby up again (I had had major abdominal surgery that had got infected, fun times) and I was putting him to bed and just so sad that I couldn’t breastfeed anymore and for all that had happened and I just got a sense of, hang on a minute, you could be in the ground now, and instead you are rocking your baby to sleep and husband is downstairs watching telly and you get to go and sit with him. And I sort of felt so lucky and grateful and happy even though obviously I still have this disease to deal with. I suppose what I am trying to say is that it helps to try and focus on what you still have, what you still can do, and sometimes or even often you actually have everything you need.
I think I am rambling so sorry if so. I was just very moved by what you are going through and wanted to say the trauma will fade and there will be a new normal and there will be a lot of good in it. A lot. Take care x
 
"And I sort of felt so lucky and grateful and happy even though obviously I still have this disease to deal with"

So true @Delta_hippo ! Thanks for sharing your story. So powerful.

O and I feel the same way. When others are so sad for her having to resort to tube feeds we are just so thankful that there is another option for her to try that can help her get better! We are just concentrating on the good in the situation.
 
Delta_hippo said:
I really understand what you are saying and just wanted to post to say thinking of you and to stay hopeful. In my case it was me that was suddenly very sick with Crohn’s when my son was a baby so I just disappeared out of his life for 3 weeks when he was not even a year old, fighting for my life in hospital while he was suddenly not getting breastfed any more and wondering what on earth happened to Mummy. I was pretty traumatised after and full of sadness for the life I had lost where I was fit and healthy and capable and fearful for what might happen next both in terms of me not being able to do things and whether I have passed it on to him. What has helped has been trying to focus on the here and now, so for example right now I have found a way of making turmeric latte that actually tastes nice and I am soon off to comfy bed in my house, not a hospital, and my little boy is asleep and is warm and dry and cuddling his favourite dinosaur. So life is okay. And we will deal with tomorrow tomorrow.
I remember one night when I was a few weeks back from hospital and able to pick my baby up again (I had had major abdominal surgery that had got infected, fun times) and I was putting him to bed and just so sad that I couldn’t breastfeed anymore and for all that had happened and I just got a sense of, hang on a minute, you could be in the ground now, and instead you are rocking your baby to sleep and husband is downstairs watching telly and you get to go and sit with him. And I sort of felt so lucky and grateful and happy even though obviously I still have this disease to deal with. I suppose what I am trying to say is that it helps to try and focus on what you still have, what you still can do, and sometimes or even often you actually have everything you need.
I think I am rambling so sorry if so. I was just very moved by what you are going through and wanted to say the trauma will fade and there will be a new normal and there will be a lot of good in it. A lot. Take care x
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Thank You for this, I definitely relate to what you are saying. I think the toughest part for me is we didnt really have much of a warning. It was like a switch flipped and we went from normal to insane. I know I dont have a choice, but I struggle and hate the idea that my mindset now needs to turn to worry about tomorrow tomorrow with a 5 year old. I like the illusion of safety, I'd like to go back to that, but once the cat is out of the bag. Maybe with time, but right now I am a ball of worry.
 
Please talk to your therapist about worrying about tomorrow’s tomorrow
Kids never come with any guarantees for safety
That is why you baby proof a house and hope it’s enough .
You only have today
That’s it
Your kiddo is under control today
Happy today
Enjoy today

what if’s don’t ever help
Looking back doesn’t

case in point
My kiddo
Severe pollen allergies at 3 weeks old
No playing in the grass etc…
Allergy shots started at 4
Life threatening food allergies in preschool
Epi pen
World or bubble ended
Crohns age 7 -more bubble bursting
Add in another food /drug etc allergies
A little sprinkle of juvenile arthritis at 10
And an ultra rare disease at 11 (I think for dx but he had it a while )
Now almost 18 -heading to college soon
Tons of friends
Did competive swimming from age 6 stopped at middle school (high school requires practice at 5 am daily )
Accomplished baker /cook -thank you food allergies -can make homemade ice cream bread bagels etc … from scratch
Very accomplished musician (played piano since age 6 and cello age 9)- un official PT for hands with arthritis -sneaky ;)

again not all bad things come from having a disease
life happens
Your kids enjoy life regardless and if your lucky you catch that glimpse /twinkle as they master each skill and enjoy their today

talk to your therapist more
 
my little penguin said:
Right most do way better on shots than pills
My kid just didn’t get that memo
As far as which steriod that depends on disease location
If the small bowel is involved they use pred
If it’s all colon then Uceris

you may think he doesn’t have other issues
Since as parents seeing them day in day out we tend to miss minor stuff
When Ds was finally feeling good on remicade
And I look back on pics I wonder how I didn’t see all of it ..
Good news is your team is on top of it
You will find the right combo even if it’s not the ideal one
You will get your child back
And hospital stays
Tests
Scopes abd pokes will be a thing of the past
It may takes months
But you will get there
Focus on today abd the improvements
Ccfa has coloring books for him to understand things more

https://www.crohnscolitisfoundation.org/sites/default/files/legacy/assets/pdfs/ibd-me-ac.pdf

www.goodreads.com

Toilet Paper Flowers

Julia, who suffers from Crohn's disease, explains living with this chronic and sometimes debilitating illness to her new friend. Because ...
www.goodreads.com

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What Does Super Jonny Do When Mom Gets Sick? (CROHN'S disease version).

Buy What Does Super Jonny Do When Mom Gets Sick?: An Empowering Tale Paperback Book By: Simone Colwill from as low as $10.05.
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I’m reading through posts and have a question. You said
“If the small bowel is involved they use pred
If it’s all colon then Uceris”
What if both areas are affected? For example, what if most of the inflammation is in the cecum and throughout the colon, and a little in the small bowel?
 
Prednisone and Uceris are different types of steroids.

Prednisone is fully absorbed systemically and goes everywhere. Therefore, you have a higher chance of experiencing the side effects such as moon face, acne, mood swings, hunger headaches, trouble sleeping etc. You don’t always get those, neither of my daughters did but it does also affect bone density, liver etc.

When your disease is further down in the TI or colon you have the option of budesonide. This is a steroid with a delayed release coating so much less is absorbed systemically and it releases where it is needed for a more topical delivery. Enticort releases higher up in the TI/left side of colon and Uceris releases further down. Same drug just different coatings. GI’s will use this for isolated disease or when a patient has been on prednisone too muchI

So if you have disease higher than the TI prednisone would usually be the steroid of choice but it will also work everywhere. When my daughter takes prednisone it treats her TI, colon and rectum as well as her awful psoriasis and eye inflammation.
 
crohnsinct said:
Prednisone and Uceris are different types of steroids.

Prednisone is fully absorbed systemically and goes everywhere. Therefore, you have a higher chance of experiencing the side effects such as moon face, acne, mood swings, hunger headaches, trouble sleeping etc. You don’t always get those, neither of my daughters did but it does also affect bone density, liver etc.

When your disease is further down in the TI or colon you have the option of budesonide. This is a steroid with a delayed release coating so much less is absorbed systemically and it releases where it is needed for a more topical delivery. Enticort releases higher up in the TI/left side of colon and Uceris releases further down. Same drug just different coatings. GI’s will use this for isolated disease or when a patient has been on prednisone too muchI

So if you have disease higher than the TI prednisone would usually be the steroid of choice but it will also work everywhere. When my daughter takes prednisone it treats her TI, colon and rectum as well as her awful psoriasis and eye inflammation.
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Thank you. So I’m trying to figure out the anatomy of the intestines to see if the cecum is considered high or low. I believe my son’s worst spot is in the cecum, but then he’s patchy through the majority of the colon. I recall our GI also mentioning the small bowel and that there’s a little thickening of the walls there. But I’m not sure what part of the small bowel. I’m trying to avoid all the Prednisone side effects because my son did get bad acne and a moon face. I have a feeling she’s going to want him back on Prednisone since he’s still flaring. Would it make sense for me to push Budesonide (Uceris) to try and avoid the side effects? Obviously, I want whatever is going to work, but the less side effects the better.
 
If you want to avoid steriod side effects- formula only no food -ensure /boost for 6 to 8 weeks
That heals the gut and reduces inflammation similar to steriods
But no side effects
 
my little penguin said:
If you want to avoid steriod side effects- formula only no food -ensure /boost for 6 to 8 weeks
That heals the gut and reduces inflammation similar to steriods
But no side effects
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I wish we could go down that path, but just can’t at this time. So would Prednisone or Budesonide (Uceris) be better for inflammation, especially in the cecum and colonic, with some in small intestine?
 
Which drug is better is really for the doc to decide since they know the history /pathologist report etc…
We have only used oral pred for steroids .
Other than the occasional Uceris rectal foam which is just for the rectum (nothing else )

every steriod use has been different in terms of side effects .
 
The cecum is at the very beginning of the colon so theoretically entocort would reach it. Whether or not it will work is another issue.
The thing is there are a lot of factors to consider before you could decide on which drug to use and your physician is really going to be the expert there. Things like
- how long has inflammation been going on
- how severe is inflammation
- extra intestinal manifistations
- child’s age and growth history
- maintenance drugs, length of time, levels
- previous steroid use
And so on.
FWIW - our first choice is always EEN. In studies it is proven to induce remission just as well as steroids but with the added benefit of mucosal healing and complete nutrition. When my daughter is inpatient it almost always means immediate use of IV prednisolone with a very long taper on oral prednisone. If it is just a little blip or lingering inflammation we just can’t get rid of and she has been on steroids too long then we go to budesonide.

The key is to go with what has the best shot at working and to not let the inflammation set up housekeeping.
 
I wish we could go down that path, but just can’t at this time. So would Prednisone or Budesonide (Uceris) be better for inflammation, especially in the cecum and colonic, with some in small intestine?
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Can I ask why not EEN? Because MANY of us have had resistant teens but we may be able to help and come up with solutions if you tell us why EEN is off the table. It is very hard - there's no denying that - but there are ways to make it easier. And honestly, Prednisone is hard too. You deal with all sorts of side effects - mood swings, insomnia, acne, hunger, weight gain, the puffy "moon face" etc. That can be equally hard for a teen.

As for which steroid to use...well, typically if there is both small and large bowel involvement, then Prednisone is used. If the inflammation in concentrated in the TI and cecum, then Entocort (which is Budesonide) is a possibility.

My daughter has used Entocort many times, and her inflammation is worst in the TI and cecum, although she did have inflammation in every part of her colon from her rectum to her cecum at diagnosis. But in the past few years, scopes have shown it's mostly just her TI and cecum, so if we can, we use Entocort. Sometimes that's just not possible because she has severe arthritis and so we need a systemic steroid. But if it's just her IBD, we can often use Entocort.

If the inflammation is in the colon only, then you can use Uceris, but that won't cover his small bowel at all.

Of course, it also depends on the severity of the inflammation - typically if it's significant inflammation, then Prednisone is used. If it's milder, then you can often get away with Budesonide.
 
Maya142 said:
Can I ask why not EEN? Because MANY of us have had resistant teens but we may be able to help and come up with solutions if you tell us why EEN is off the table. It is very hard - there's no denying that - but there are ways to make it easier. And honestly, Prednisone is hard too. You deal with all sorts of side effects - mood swings, insomnia, acne, hunger, weight gain, the puffy "moon face" etc. That can be equally hard for a teen.

As for which steroid to use...well, typically if there is both small and large bowel involvement, then Prednisone is used. If the inflammation in concentrated in the TI and cecum, then Entocort (which is Budesonide) is a possibility.

My daughter has used Entocort many times, and her inflammation is worst in the TI and cecum, although she did have inflammation in every part of her colon from her rectum to her cecum at diagnosis. But in the past few years, scopes have shown it's mostly just her TI and cecum, so if we can, we use Entocort. Sometimes that's just not possible because she has severe arthritis and so we need a systemic steroid. But if it's just her IBD, we can often use Entocort.

If the inflammation is in the colon only, then you can use Uceris, but that won't cover his small bowel at all.

Of course, it also depends on the severity of the inflammation - typically if it's significant inflammation, then Prednisone is used. If it's milder, then you can often get away with Budesonide.
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Very helpful, thank you. The reason we’re not doing EEN at this moment is because as much as I hate to admit it, my husband, my son, and I feel it would be too emotionally hard. He’s got a lot of anxiety and is on medication for it. He’s always been very introverted and he’s recently starting to get out more and socialize. Part of him socializing is going out with friends to eat, etc. We’re just not all on the same page with EEN. I would want to push him to do it, but my husband and son are on a bit of a different page. We all need to be on the same page for it to work. I would love to explore at some point, maybe my son needs more time to consider it…
So that’s why I need alternatives at this time.

Right now, he’s on Humira (just increased frequency to every 10 days) and he’s on his last 4 weeks of Uceris Foam treatment. What’s strange is that some days are better than others. He started thinking the uceris was working because his frequency went down from 5-6 to 3-4 BMs last week. But he had days this week where the frequency went back up to 5. So he’s been going back and forth with frequency/urgency. We’ve always thought he has a little IBS and he’s very anxious. Could some of the frequency/urgency be due to IBS/anxiety? It’s hard to know if it’s all IBD flare or a touch of IBS/anxiety going on…
 
Most definitely some of the frequency/urgency could be IBS. It is not uncommon for our IBD kids to have an IBS overlay and it makes it extremely hard to suss out whether or not they are truly flaring or if it is an IBS reaction. The usual IBD markers help with that...blood labs and especially fecal calprotectin.

However, it is also not unusual to have some good and bad days with IBD as well but his anxiety will cloud the issue for awhile.

My daughter was dx'd with IBS at some point but when she is bleeding and her calpro is high we know it is definitely an IBD flare.
 
EEN is absolutely emotionally hard. Don't feel bad saying that. My daughter was unable to do it at 16 - got very depressed. She did it last year (she's now in her early 20s) but that was because she has a motility disorder and literally could not tolerate any food by mouth - she was just unable to digest it. She did EEN for 16 weeks and it was VERY hard for her. And this is a kid who has had 11 surgeries and has been hospitalized 2-3 times per years for the last 7 years.

Is your son seeing a psychologist to help with the anxiety and with dealing with a chronic illness? My daughter was extremely against seeing one, but luckily her GI absolutely insisted and it made a world of difference. She has struggled with anxiety too.

As for Humira, if you've just increased the frequency, I'd give it more time. It's possible the foam has helped somewhat but not enough. It's also entirely possible that he has IBS and anxiety causes diarrhea or more frequent stools or stomach pain. My daughter has both IBD and IBS - it's not uncommon. And anxiety definitely causes diarrhea for her and it can sometimes be difficult to figure out if it's IBS or IBD causing the diarrhea. But doing a Fecal Calprotectin test often gives us some good, objective info to go on and sometimes symptoms can help her differentiate (i.e., if there's blood, it's IBD. If your child is not a bleeder, then it gets more complex).
Of course, it can also be a mix of both IBS and IBD simultaneously...I think it's @crohnsinct who always says "It's clear as mud" ;)!!
 
crohnsinct said:
Most definitely some of the frequency/urgency could be IBS. It is not uncommon for our IBD kids to have an IBS overlay and it makes it extremely hard to suss out whether or not they are truly flaring or if it is an IBS reaction. The usual IBD markers help with that...blood labs and especially fecal calprotectin.

However, it is also not unusual to have some good and bad days with IBD as well but his anxiety will cloud the issue for awhile.

My daughter was dx'd with IBS at some point but when she is bleeding and her calpro is high we know it is definitely an IBD flare.
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At some point in the near future, our GI said she will do a fecal calpro so that will be good to see what that number is. He does have intermittent bleeding so that tells me there’s still some flare going on, even though he said that’s gotten a tad better. But even bleeding he said comes and goes with some days better than others. It’s all so confusing and all I do is obsess about this. Thanks for your reply!
 
Maya142 said:
EEN is absolutely emotionally hard. Don't feel bad saying that. My daughter was unable to do it at 16 - got very depressed. She did it last year (she's now in her early 20s) but that was because she has a motility disorder and literally could not tolerate any food by mouth - she was just unable to digest it. She did EEN for 16 weeks and it was VERY hard for her. And this is a kid who has had 11 surgeries and has been hospitalized 2-3 times per years for the last 7 years.

Is your son seeing a psychologist to help with the anxiety and with dealing with a chronic illness? My daughter was extremely against seeing one, but luckily her GI absolutely insisted and it made a world of difference. She has struggled with anxiety too.

As for Humira, if you've just increased the frequency, I'd give it more time. It's possible the foam has helped somewhat but not enough. It's also entirely possible that he has IBS and anxiety causes diarrhea or more frequent stools or stomach pain. My daughter has both IBD and IBS - it's not uncommon. And anxiety definitely causes diarrhea for her and it can sometimes be difficult to figure out if it's IBS or IBD causing the diarrhea. But doing a Fecal Calprotectin test often gives us some good, objective info to go on and sometimes symptoms can help her differentiate (i.e., if there's blood, it's IBD. If your child is not a bleeder, then it gets more complex).
Of course, it can also be a mix of both IBS and IBD simultaneously...I think it's @crohnsinct who always says "It's clear as mud" ;)!!
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So true! Thank you for the info.
Yes, he started out with his only symptom being bleeding. That was how he got diagnosed. It’s gotten some better, but still bleeds intermittently.
He’s been going to a Pyschologist for about 5 years now off and on. He was just diagnosed this past July so I’m going to start making those appointments again since I know that would be good for him with this new diagnosis. Hearing your and others’ experiences is so helpful.
 
Hi All,

Anyone have experience with enlarged lymph nodes on the left side and back of the neck? We have a pediatrician appt at 3:30 today to take a look. He's had them for at least 2.5 weeks, no other symptoms. Had his 2nd covid shot on 12/1, Remicade infusion on 12/20. That is the only med he is on. Bloodwork looked good on 12/20, Sed rate slightly elevated from <1 to 4, C-reactive protein was <0.5, WBC 8.4, Hemoglobin 13. One normal poo a day or less, consistent weight.

They arent huge, probably bean size, but its definitely noticeable. One on the left side of his neck, and one more towards the upper back part of his neck. GI team said they were not concerned, but its difficult for me to sit with this. I didnt notice it until after his appt on 12/20, so when he had his checkup I guess they didnt notice either, which surprised me.

His calpro at the end of Sept was <16.
 
So most lymph nodes are the size of beans or grapes every once in a while .
If you are checking them often that alone irritates them and can cause them to enlarge a tiny bit

Infectious disease doc can rule out a ton of stuff

Ds had an enlarged lymph node on his jaw line
But his appeared over night the size of a large golf ball on his neck

A month of watching and bloodwork for numerous things he did not have

They finally did multiple ultrasounds later a CT scan
Useless needle biopsy (avoid that one they never get enough cells )
And finally they removed it

In the end it was simply granulomas from his Crohn’s disease nothing more
They tried to grow all sorts of things in the tissue for months
Nothing
No infection
No cancer
No nothing
Just simply crohns

Other lymph nodes around it were bean size and went away on their own

So moral of the story
Most of the time they go away after a month
And even when they don’t -it’s probably crohns
 
Persistently enlarged lymph nodes are a fairly common covid shot reaction. They should get better over the course of 6-8 months.
 
Yep! O gets them in her neck. Never anything to worry about. Lots of fluids drain through nodes and occasionally they get big but usually go away. At the beginning of Remicade we had them checked by pediatrician. Now we just watch.
 
Saw the pediatrician, he said they were enlarged maybe like a lima bean, but they were soft. Didn't have any enlarged in his armpits or groin. Doc took a photo, and said to watch it. His GI team did not seemed concerned.

He has not been sick at all, no fever, no cold, no GI issues. Covid shot on 12/1.

I know MLP has been thru the wars, so good to hear the experience. It is difficult when you are only a year in, and everything is extremely scary. I truly appreciate the feedback.
 
crohnsinct said:
Yep! O gets them in her neck. Never anything to worry about. Lots of fluids drain through nodes and occasionally they get big but usually go away. At the beginning of Remicade we had them checked by pediatrician. Now we just watch.
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Thank You...the "just watch" part I am horrible with..and that's a massive understatement. :)
 
pdx said:
Just wanted to add that calpro of <16 is excellent news!
Click to expand...

Crazy right? Its does bring a feeling of, "can we just be done with this now!"

Will most likely get scopes in the next few months, so that will really tell the story. We are thankful to be off the 9 antibiotics a day, butt foam, and weekly methotrexate shots. Everything is feels normal but my brain, the lymph nodes didnt help that :(

I do appreciate all your support immensely.
 
Heck yeah...I wanted to comment on the amazing results that he is getting with Remicade. You are now a source of encouragement for other newbies scared of Remicade. This is a success story! YAY!

FWIW - my girls think cal pro's under 50 are the stuff of legends and say they are more likely to spot a rainbow unicorn than a lab report with <50 cal pro.
 
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Unicorn here
Fecal cal <15 here for years
Except when insurance forced Ds to space out Stelara to every 6 weeks once
So it can and does happen
Glad your kiddo is there in the good spot
 
While I have everyone's ear, does it raise any flags that his Sed Rate went from <1 to 4?

CRP stayed the same <0.5

Love all you guys and girls, which we could meet under different circumstances!
 
No flags here. Normal is normal. Sed rate goes up and down for lots of reasons. Could be a twisted ankle, sniffly nose or really anything. It’s one point in time. Watch for trends.

This is why we all love cal pro. It is specific to the gut and nothing else.

FWIW O once had a ridiculously high sed rate and CRP and I was pretty perked up over it. GI didn’t bat an eye. Next month it was totally normal. No clue what raised it. She swears she wasn’t sick or hurt or anything.

Also, different docs like different tests but most GI’s I follow like CRP because it is more likely linked to what is happening that day. Sed rate takes awhile to raise and lower where as CRP is faster. Idk if that is hood or bad but it does make it a little easier to link it to things.
 
It depends on the kid which tests they watch
The Gi team learns your kids specific tests /signs over time
Crp is useless in Ds always normal
They don’t bother drawing but anymore
Sed rate will be outside of normal range (0-20) for ds if he is flaring badly
It will move above 8-9 if things are moving in the wrong direction but not true flare
Add in the sweet spot number can and does change if you change lab locations

Fecal cal can be normal and still minor flare due to small intestine issues not colon
So it’s a matter of the docs learning your kiddo
Takes time
But minor bumps 1 to 4 is not anything Gi would blink on since the number is so low
 
I wouldn't worry about a Sed rate going from 1 to 4, especially since his CRP is low and FCP is <16!!! It does help to watch trends - my daughter always has a high CRP (literally for 7 years now) except when on steroids, but her Sed rate is generally normal except when she's really flaring. Her platelets are also high so we watch those - her doctors are less worried if they're a little high vs. significantly high.

Her doctors (both her rheumatologist and GI) say that Sed rate is less accurate than CRP and actually they rarely test her Sed rate now.

Like @crohnsinct, my daughter recently had a very high CRP (130 ish) and her doctors were quite concerned but it went down over 6 days to 11 (still high since range was 0-3 but that's normal for her) and we have absolutely no idea what caused it.

My kiddo must also be a rainbow unicorn 😂 because her FCP has definitely been below 50...not recently but definitely in the past.

So very glad to hear your son is doing well. Enjoy life!!
 
Here's a good one. I am in the process of being diagnosed with Sarcoidosis.

I've had low WBC counts that would correct themselves over a few months for the past 4 years or so, no symptoms otr sickness.. After my son got the Crohns diagnosis I decided to get a checkup. Low WBC's again, around 2.7, so back to the hemotologist for the first time in 3.5 years (last time they took 7 vials of blood for tests, was in 2018). I told him L's story, and he said lets check for some autoimmune markers. My ACE came back high, 85 I believe. The sent me to a pulmonologist, who ordered a catscan.

Enlarged lymph nodes in my lung/chest, and some inflammation in my lungs. Now, they want to do a biopsy to rule out lymphoma. Then seem fairly certain its sarcoidosis. I'm pretty my floored. I work out 4 days a week, do 50-100 pullups a day, never been sick. Not that any of that really matters, but this is beyond frustrating and depressing. In the past 12 months my dad died of covid, son was diagnosed with IBD, and now best case I have sarcoidosis. If they tell I have lymphoma, I am not sure how I am going to be able to mentally absorb that.

Now I had my catscan 2 weeks after my covid booster and 3 weeks after my flu shot, so not sure if that may have contributed to the lymph node inflammation. I also told them I am under unimaginable stress. The plan is to do the biopsy and then put me on 3 months of 10mg prednisone to get the inflammation down. They say with Sarcoidosis it can burn itself out and go away on its own, but it can also impact other organs.

I really really dont want to go on steroids for 3 months...
 
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I'm so sorry to hear that @Jbungie. I have heard of lymph nodes being enlarged due to the COVID vaccine.

In terms of steroids, my daughters have been on 10 mg of Prednisone for 3-6 months many times. 10 mg is a relatively low dose and is often used for inflammatory arthritis. They didn't really have significant side effects - increase in appetite and sometimes a slightly puffy face, but nothing like the side effects you see with 40 mg Prednisone (which is what's usually given for IBD).
 
Hi All,

Had an infusion today at CHOP. 5 week span for the first time since we dropped the methotrexate in Sept. Got labs, and his albumin went from 4.6 to 2.9?? All other labs looked normal aside from Alkaline Phospahatase, which was 117.

How the heck does his albumin drop that much in 5 weeks? Zero symptoms, consistent weight, great appetite and energy, less than 1 poo a day, all normal.

I am so bummed out, I was trying not to cry on the way home. I find it hard to believe an extra week would make that much of a difference. His trough level at his last infusion was 35. All this other labs, RBC, WBC, HGB, Total Protein are all normal. His albumin hasnt been that low since last March...hasnt been below 4. Seems crazy, and of course I messaged his docs.
 
Ahhhh so let me introduce you to one of our favorite medical terms on the forum. BLIP. If everything else is good it could just be a weird little blip. It is one lab, one point in time. I wouldn't worry about it unless the GI says to worry. Did he have a CRP or Sed Rate done? Calpro?

It is quite a drop over 5 weeks so it would certainly perk me up but I think at most the GI might say retest in two weeks.

Please try not to panic. I know easier said than done.
 
Given everything else is good, I would also guess that his GI will want to re-test in a few weeks. I wouldn't be hugely worried but I would definitely watch it. And make sure he is eating well, which it sounds like he is.
Hang in there - labs sometimes go up and down and then normalize and sometimes we just don't know why.
 
Haha..I dont like blip..not that kind of blip! That was the last thing I thought I would be looking at. If it wasnt for that, his labs would have almost all been normal.

Only CRP was included today, which was <0.5.

His sed rate on 12/20 was 4, which was also a first. Had been <1.

Thank You for the quick response! I can already feel the nightmares tonight :(

Honestly..I dont know how you guys do it...I start to feel better, then this happens and I say who am I kidding..I feel broken.
 
Sed rate of 4 is extremely normal
Agree with others on blip
We have had blips many times
Once ast was high for liver
So Gi was actually concerned
Two weeks later ast was fine and alt went barely above normal
So at that point we stopped chasing and just went to regularly lab intervals which were all normal
Gi will let you know when you need to be concerned
 
A sed rate of 4 is VERY normal. I wouldn't worry about it going from 1 to 4. If it jumped from 1 to 20, I'd be more concerned.
Unfortunately, blips happen. That's just the way it is. When your GI is concerned, believe me, you will know. You will get a quick phone call as soon as labs are read. That's what happened when my daughter's CRP jumped 130 and her AST and ALT were like 114 and 120 ish. Her docs immediately called her and had a plan. And within 6 days, her CRP was 11 and her AST was normal and her ALT was barely elevated.
Try your best not to worry too much. Make sure you call your own therapist and take care of yourself.
 
Talked to the nurse, she said they were a bit surprised at the albumin drop as well. Said to keep an eye on his weight, and any change in bathroom habits or appetite.

It was the first time we took him to a 37 day spacing between infusions. The prior month was 29 days.

I guess I'm not experienced with the random blips yet..I dunno.

If any of you are on instagram or facebook please message me. Would be nice to be able to show and see everyone.
 
My daughter would get sick each time she had to restart Methotrexate. It would take 4-6 weeks of injections for her to sleep through the nausea, and not vomit. I guessher body had to learn to process it.
 
Maya142 said:
EEN is absolutely emotionally hard. Don't feel bad saying that. My daughter was unable to do it at 16 - got very depressed. She did it last year (she's now in her early 20s) but that was because she has a motility disorder and literally could not tolerate any food by mouth - she was just unable to digest it. She did EEN for 16 weeks and it was VERY hard for her. And this is a kid who has had 11 surgeries and has been hospitalized 2-3 times per years for the last 7 years.

Is your son seeing a psychologist to help with the anxiety and with dealing with a chronic illness? My daughter was extremely against seeing one, but luckily her GI absolutely insisted and it made a world of difference. She has struggled with anxiety too.

As for Humira, if you've just increased the frequency, I'd give it more time. It's possible the foam has helped somewhat but not enough. It's also entirely possible that he has IBS and anxiety causes diarrhea or more frequent stools or stomach pain. My daughter has both IBD and IBS - it's not uncommon. And anxiety definitely causes diarrhea for her and it can sometimes be difficult to figure out if it's IBS or IBD causing the diarrhea. But doing a Fecal Calprotectin test often gives us some good, objective info to go on and sometimes symptoms can help her differentiate (i.e., if there's blood, it's IBD. If your child is not a bleeder, then it gets more complex).
Of course, it can also be a mix of both IBS and IBD simultaneously...I think it's @crohnsinct who always says "It's clear as mud" ;)!!
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What do you mean by if there's blood, it's IBD. If your child is not a bleeder, then it gets more complex?
 
If I remember correctly we were just saying that many IBD patients also have an IBS overlay. They often present with the same symptoms so you can't always jump to thinking it is IBD flaring. It might be the IBS. But if you are seeing blood then it is definitely IBD because IBS doesn't cause bleeder. If your child doesn't bleed with flares then it gets a little harder to decipher if the increase in symptoms is IBD or IBS related.

Similar to what I was saying about your son. The lack of weight gain or weight loss could simply be a learned behavior that food causes upset and even if the Humira is working he may not be gaining because of a behavioral issue or simply an intake issue. You need to look at the labs to see if there is evidence of inflammation and if not, then pursue other causes.
 
crohnsinct said:
If I remember correctly we were just saying that many IBD patients also have an IBS overlay. They often present with the same symptoms so you can't always jump to thinking it is IBD flaring. It might be the IBS. But if you are seeing blood then it is definitely IBD because IBS doesn't cause bleeder. If your child doesn't bleed with flares then it gets a little harder to decipher if the increase in symptoms is IBD or IBS related.

Similar to what I was saying about your son. The lack of weight gain or weight loss could simply be a learned behavior that food causes upset and even if the Humira is working he may not be gaining because of a behavioral issue or simply an intake issue. You need to look at the labs to see if there is evidence of inflammation and if not, then pursue other causes.
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I didn't know there is IBD and IBS... goodness.
 
IBD = inflammatory bowel disease - causes damage and associated with EIM's.

IBS = Irritable bowel syndrome - very real and could be very debilitating and extremely hard to figure out what will help it. However, it does not cause physical damage and not associated with EIM's.

You can one or the other or both.
 
Hi All,

Quick update. Albumin at last infusion was 2.9, jumped back up to 4.2 with his labs on Friday, HGB 13.3. I'd like to credit for all those that said it may be a blip, hopefully it was!

His Zinc is low at 57.3ug/dL (60-120 range). Not as familiar with how bad that may be (I must now learn all things zinc). He takes a daily gummy that has about 6mg in it, is anyone else supplementing zinc daily? Was reading it corelates with Albumin, so was kind of surprised zinc was low, and albumin was normal.

As always I appreciate your expertise and knowledge. I still struggle daily with all of this.
 
Did Gi tell you to supplement zinc ?
or just watch and see ?
If so I would only supplement what they suggest at the level they suggest
Ds was low on potassium a few times
No need to supplement
It went away
Low on vitamin D way back when at dx (before vitamin D studies were out )
He still takes daily vitamin D and C per Gi
So it depends

glad it was just a blip
Blips happen a lot
 
Zinc deficiencies did show up for H when Albumin was low and she wasn't doing well. The GI office would advise us to supplement. Sometimes inflammation causes an inability for the small intestine to absorb nutrients from food properly. I would call and see if you need to supplement, if so it will probably be more than 6mg. We typically took a separate zinc supplement.
 
Apologies if this is a scared parent type of question.

Absolute lymphocytes with a range of 970-3960. We hover around 4,200 to 4,500, his latest being 4,350. Are these, or when do these become a cause of alarm?

Also the ranges change. For example, is Sept, the range was 1,130-5,520. So what was normal then, is flagged as high now.
 
Ranges can change. Sometimes the lab just changes the range and sometimes it changes because of age. His lymphocytes are high but not terribly high, so I’d wait till his appointment to ask the GI. If you find yourself worrying a lot, you can send a message in the portal but believe me, if your GI was worried, you’d hear ASAP.
 
The only time we have been called on differential was when the neutrophils were out of control high. I think you are fine to sit tight and like Maya said, contact the GI if it will help you rest easier.

Now that you have mastered blips just wait until you come across kid yuck….that would be the miscellaneous kid viruses that they get but that send you as a Crohn's parent wondering if there is an impending flare. At the beginning you tend to forget that even though they are Crohn's patients they are also germie little kids and get regular old kid yuck. Don't worry, we will be there for ya!
 
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Yes, his neutrophils are 1,990, lymphocytes 4,350. Aside from when he was first diagnosed, and his neutrophils were sky high, he always has higher lymphocytes by about a 2:1 margin, which seems like the opposite of what it should be?
 
my little penguin said:
@Jbungie
Just checking in
How are things going ?
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Thank You so much, cant express how much that means!

We are doing good, he is full on himself. Remicade every 5 weeks is our only therapy right now. 70% in height 38% in weight. Scopes in the summer to get a gauge on how everything looks..its been 15 months now. He did have a urinalysis and his Ph was high..8.5. That has me concerned a bit. Not sure if its diet related or what. His pediatrician just said add some orange juice to his diet...I dunno. Not sure if anyone has experience with that.

Also When he sleeps his fingers and toes move twitch periodically, I asked his GI for a magnesium test next infusion. He sleeps fine, but I am just on constant hyper alert at any thing that doesnt look normal, which is bad for me. I hate seeing something and feeling the urge to google. it.

One poo a day is the usually, and pretty normal. I'll admit, I get stuck thinking why are we doing well when other are struggling. I have guilt about that. He is also starting 1st grade in the fall, so I fear our eating schedule is going to get disturbed.

Out of no where I got diagnosed with sarcoidosis in my lungs. I dont really have any symptoms. I am 6'3" 195lbs and very active, I do about 60 pullups a day, so my mind is kind of blown by all of this. My pulmonologist said she wants to monitor me and hold off on steroids if I am not having any symptoms, but catscan shows inflammation in my lungs and enlarged lymphs in my chest. They did a biopsy at Penn, and confirmed sarcoid. Sarcoid is a weird autoimmune, as is can resolve itself, and seemingly disappear.

I am trying to settle in. I've stopped googling and reading studies. I've stopped reading GI docs on twitter. I think about @crohnsinct often. I hate seeing anyone struggle with this. I still curs e this daily. :(

If there's a secret to not be in a constant state of waiting for the other shoe to drop, somebody please let me know :)
 
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@Jbungie you should look @crohnsinct’s thread for her daughter’s surgery. Her incredible kiddo is doing well after surgery and is adjusting to a stoma. I think I speak for all the parents when I say we are all hoping she will now get her life back, because we all know she is destined to do great things!

Enjoy that he is doing well. Don’t feel guilty - success stories give everyone so much hope. I sounds like he’s a very normal kindergartener and I’m sure first grade will go well too. I would think of him as a child first - just a child, not a child with Crohn’s. And I really would not worry about minor abnormalities in his blood work or urine tests.
 
YAY you! Stopping the googling and reading studies is a great step in letting your mind settle! I am so proud of you!

Glad your boy is still doing well. I wouldn't worry too much and just go ahead with the O.J. You are right first grade will be an adjustment re: schedule but I have full confidence you can handle it. Does he have a 504? CCFA has resources and templates to help you with that and we can help you with the odd and helpful bits that we have all included.

Sorry about the sarcoidosis dx. I really hope it settles on it's own and now YOU and making ME feel getting because I am a lazy blob and the only pulling up I do of anything is me off the couch to eat more cookies!

Please don't feel guilty about your son doing well. The good stories are necessary here! We don't want to present the picture of nothing but problems when it is actually the opposite! The vast majority do well. O is just an outlier but she is getting the treatment she needs and can still live a happy and very full life! Just took us a while to get here.
 
Maya142 said:
@Jbungie you should look @crohnsinct’s thread for her daughter’s surgery. Her incredible kiddo is doing well after surgery and is adjusting to a stoma. I think I speak for all the parents when I say we are all hoping she will now get her life back, because we all know she is destined to do great things!

Enjoy that he is doing well. Don’t feel guilty - success stories give everyone so much hope. I sounds like he’s a very normal kindergartener and I’m sure first grade will go well too. I would think of him as a child first - just a child, not a child with Crohn’s. And I really would not worry about minor abnormalities in his blood work or urine tests.
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Yes! I l read it often. The problem is, I look at it and say to myself, these people are superhumans! :)
 
You sound just like me .. I was frantically googling everything over the past year and got myself into right mess after my son's diognosis and I hope I do not fall to pieces the next time he tells me there is blood.

I've since stop the frantic googling ( people do that to regain control of a situation) and I feel better for Not googling so really try and step away from it. It's hard I know...

Glad your son is doing well!
 
So glad he is doing so well
The secret- let the docs tell you when to worry
They will if it’s actually something to worry about
Enjoy you child
The other secret
Your child will grow up and you worry less /less about crohns because teenagers (even without anything going on ) as part of growing give you others things to focus on
Then they leave the nest
Honestly been at this 11 plus years
The first one to two years is the parent adjustment phase
Then it just kinda hangs in the background
There but just not noticed
Ds only sees Gi every 6 months
bloodwork every 3 months
Scopes every 5 years
Just busy being a teen almost adult now

Enjoy 1st grade
They are so very cute at that age
School is still shiny and bright
 
Hi All,

Just wanted to give an update. Scheduled follow up scopes this Friday at CHOP, I am nervous/anxious. Waiting on a scheduled calpro test as well.

Otherwise we are doing our thing. We havent had bloodwork in over 2 months, so I am kind of dreading being sucked back into that. I'm trying to adjust.

Hope everyone is doing well!
 
Nice! Scope results should go a long way to helping you settle in. I love that you guys have gotten a break from labs and you are trying to adjust.

Good luck to both of you on Friday. Please update us when you are ready. Lots of easy clean out and clear scope vibes coming your way!
 
crohnsinct said:
Nice! Scope results should go a long way to helping you settle in. I love that you guys have gotten a break from labs and you are trying to adjust.

Good luck to both of you on Friday. Please update us when you are ready. Lots of easy clean out and clear scope vibes coming your way!
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Thank You! Our only other colonoscopy was inpatient, and he couldnt even drink liquids the morning of, so I'm hoping this will seem like a piece of cake. I just spent $140 on 7 sold out Roblox blind bags on ebay as drinking motivation :) I think we are just doing the miralax, and that is all we used last round and it worked fine.

I will definitely keep you updated. The initial scopes (18 months ago) were not pretty(all of the damage was large colon and cecum), so my mind is racing about what we are gonna see.

And never underestimate the impact you guys have on the newcomers. I am in awe of how you long termers have navigated this..truly.
 
Aw shucks! We are just paying it forward. Others were here for us.

LOL! Bribery! I LOVE it!

FYI - depending on the time of his scope, he might not be able to drink the morning of so just be prepared. But I do think it will be easier just for the mere fact he feels better and is home and last time everything was so new and scary.

Don't forget wipes and A&D ointment….even us adults use it! Oh and a change of underwear and pants for the ride there…just in case.
 
my little penguin said:
www.crohnscolitisfoundation.org

Template Section 504 Plan for Children with Inflammatory Bowel Disease

If you need help working with your child's school to develop and educational plan for your child, this 504 template letter may be helpful. The letter includes description a 504 plan and contains sample accommodations that can be implemented in school. Cut and paste sections of the letter to...
www.crohnscolitisfoundation.org www.crohnscolitisfoundation.org
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Is this document given to the school all that is needed for the 504?
 
You fill it out - give it to the Gi office to sign
They send it back to you
And then you send it to the 504 coordinator of the school
You then have to request a meeting and they determine if he is eligible
Once the school signs it
It can be changed by either the school or you (you need to get letters from Gi for each change )
Abd typically is reviewed once a year

we used a card
When Ds got to second or third grade
He placed it on his desk with his name on it
Blue was bathroom
Yellow card was nurse
So he didn’t have to ask to leave the room
 
Yep. That’s it.

just adding that as he gets older things like sports come into play. State athletic conferences have rules about attendance and playing on certain days etc. you can get that written in also ie: playing time will not be reduced due to absenses for medical appointments.
Also parking spot near the school when he gets to driving age.
 
Honestly my kiddo always has had the ducolax plus miralax combo
Since age 7
Never had any issues in 8 or 9 scopes
Assume Gi wants ducolax plus miralax combo
So recommended to follow Gi instructions
 
Jbungie said:
Scope Prep question. Can we get away w Miralax only, or is the duralax pill kick off a necessity?
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Maybe. But the problem is if you don't get away with it and the doc's view is impeded by incomplete bowel prep, your child has suffered all the stress and discomfort of the procedure but has not gained all the expected benefit.
 
One of my daughters' pediatric GI's used Miralax only. One used Miralax only but with a two day prep. The adult GI used Mrialax/Ducolax. Lots of different ways to do it but like was said before, best to follow the instructions as written lest he not clean out fully. FWIW - poor clean out in pediatric world will sometimes get you an enema (icky for the kids) and worst case if they aren't cleaned out and the GI can't see they will vacuum the poop out (they are asleep so won't know).
 
Also keep in mind what worked for prep at dx when he was actively flaring
May not be as effective at clean out when things are moving normal speed through his gut day in and day out
Hence the different prep from your Gi

scopes during bad flares tend to get different prep
 
I would use the Dulcolax if you've been told to. It's a stimulant, so it will get his bowels moving. Otherwise it might take a very long time to start and you could end up with poor prep - which could mean an enema (hard on kids - causes a lot of cramping) or even scopes being canceled (REALLY not fun when you've fasted and prepped) or poor scopes (which might mean repeat scopes sooner).

Also, for prep, our instructions have often said to start at noon or later. We try to start earlier because otherwise my daughter is always up late at night going to the bathroom. I know other parents have done this too - the sooner you start, the sooner it's over! My daughter just had scopes a month ago and started around noon - boy, did she regret that when she was still going to the bathroom at midnight!

Flushable wipes and Desitin are a must! Also, it helps to have a tv show or something to watch on a tablet or laptop - he'll be in the bathroom a lot!

PS -my daughter's scopes were completely clean and she is on Remicade too. Hope to hear you get similar results!!
 
My son got diagnosed with crohn's last year September. We didn't know what it was initially and then were denial phase for almost 6 months before accepting the reality. Then went again to GI to start the treatment. By that time he developed fistula in the anal region and complains about heaviness in the bottom. He started having inflectra infusions of 150 mg starring on May 4th. He had 3rd dose on June 20th and next one is going to be on August 20th. Our insurance approved inflectra instead of Remicade and 5 gms per kg instead of 8 gm. He currently weighs 73 lbs. I don't see much improvement even after 3 infusions and worried that infusions are not working as expected. He is not having normal day and complains about not feeling well and heaviness in bottom area. Went to GI last week to follow-up this issue but he couldn't give satisfactory solution to this. He says it takes some time to get down his inflammation and its normal. His CRP is less than 0.5 and ESR is at 13. We are really having hard time to see his suffering and its almost one year we lost our normal day of life. We lost hope on our current GI and taking him to CHOP on coming Thursday for second opinion. Hopefully they will be able to fix his issues.
 
@sairm
Unfortunately inflammation can build very very quickly but takes what seems like forever to heal .
The three infusions he has had so far are considered induction doses
One at zero weeks, 4 weeks and six weeks
Then every 8 weeks is standard
At 5 mg/kg

however most kids need more frequent dosing for maintenance than every 8 weeks
And need help introducing remission/reducing inflammation
So I am glad you are going to be seen at chop.

sometimes they add meds to be taken while on remicade
Such as methotrexate
Or add oral steriods
Or add exclusive enteral nutrition (een formula only no solid foods )

some kids need two things listed above added
Some need all three
And remicade infusions moved up in frequency and dosing

Ds needed steriods /een and 7.5 mg/kg every 6 weeks
So it really does vary

good luck
 
my little penguin said:
@sairm
Unfortunately inflammation can build very very quickly but takes what seems like forever to heal .
The three infusions he has had so far are considered induction doses
One at zero weeks, 4 weeks and six weeks
Then every 8 weeks is standard
At 5 mg/kg

however most kids need more frequent dosing for maintenance than every 8 weeks
And need help introducing remission/reducing inflammation
So I am glad you are going to be seen at chop.

sometimes they add meds to be taken while on remicade
Such as methotrexate
Or add oral steriods
Or add exclusive enteral nutrition (een formula only no solid foods )

some kids need two things listed above added
Some need all three
And remicade infusions moved up in frequency and dosing

Ds needed steriods /een and 7.5 mg/kg every 6 weeks
So it really does vary

good luck
Click to expand...
Thank you so much your quick response. Not sure what is causing heaviness at rectal area. He is suffering with that symptom for last 8 months. Did his colonoscopy and small bowel enterography in Dec 2021 which were clean then. Still he complains on heaviness and it becomes worse by end of the day. I have gone thru this forum a lot but couldn't see this symptom from any post. Spent so much time on Google to understand this but not that successful.
 
7 caps of miralax and 2 exlax, and he only poo'd 3 times! They did an enema to clean out any possible left overs.

Doc said scopes looked good "visually normal". Biopsy review will be on Thurs. His calpro was 19. He did have an issue with the anesethia. Vomited 3 times before we got home. Seemed to rebound, then woke up Sat and vomitted 2 more times (wasnt keeping anything down), so we ended up at the ER at CHOP for 6 hours. Xray, Ultrasound, cbc all came back clean.

He was doing much better yesterday, and actually started 1/2 day camp today! Just trying to get him back on track. Has been having some wet toots, and had a loose stool, which I guess is expected after all that activity.
 
Sounds like they gave him the “little kid” clean out prep
My kiddo although was 7 at the time
Had to have the “adult” version which is basically double
14 caps (1 bottle miralax) -2 ducolax am -2ducolax pm with 64 ox of Gatorade
Never failed in 8 scopes

of course Gi would “forget” and just give us the little kid version for a while till I would nicely remind them what worked previously

as far as puking afterwards
Now you know
There are meds they can give after scopes which make vomiting less likely
We did this for my non ibd kiddo more than once
Works out so much better

glad the scopes look clean
Hope biopsies are clean as well

great news!!!

love he is doing day camp
He will be back to normal soon
Great job!!!
 
YAY clean scopes! Double yay low cal pro! Boo bad prep and recovery. Like MLP my girls always needed a lot more miralax than what was on the sheet. Sorry it was so traumatic but like MLP says,”now you know”. Hopefully you won’t have to worry about it for another year.
 
Spoke with the doctor on Friday. All biopsies were normal, histological remission. Only note on the scopes was "there some mild erythema in the gastric body."

So now I guess we hold the line. 6 weeks infusions, they said maybe push a bit further depending on his drug levels. Hoping we can bring those down a bit.
 

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