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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.
 

my little penguin

Moderator
Staff member
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
 

Maya142

Moderator
Staff member
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.
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.
 
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.
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.
 

my little penguin

Moderator
Staff member
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.
 

crohnsinct

Well-known member
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.
 

Maya142

Moderator
Staff member
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)
 

crohnsinct

Well-known member
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.
 

my little penguin

Moderator
Staff member
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.
 

Maya142

Moderator
Staff member
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
 

crohnsinct

Well-known member
"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.
 
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

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.
 

my little penguin

Moderator
Staff member
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
 
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