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Hanksmom

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OUr son is 2.5. Hx of fevers for over 5 months now and bloodwork as well as chronic Anemia and fecals and fam hx are pointing towards ibd (crohns) (we’ve been to every specialist under the sun, so we’ve ruled out every other cause. until we get home to scope officially the drs believe there’s a good chance of ibd)looking to connnect w other parents and gain tips of how they managed/ treated etc and also good ideas especially for young kids diets etc. my son is a super picky eater. Aka no Mac n cheese I realize I’ll Be cooking from scratch and really shift our worlds. Thanks in advance :)
 
Hi. I am sorry for what your son is going through. There is a section on here called Parents of kids with ibd. I am going to tag Clash, Maya 142, my little penguin.
 
Here is the parents section
Lots of parents there
http://www.crohnsforum.com/forumdisplay.php?f=49

Tagging farmwife and pilgrim both had kiddos dx around age 3

Ds was dx at age 7 he is now 14 so we have been on the Crohns
Roller coaster for awhile

The key is getting the right meds
Which unfortunately can be different for everyone
Testing for very early onset ibd through genetics
Emory university does it
Finding out if chronic granulomas disease is ruled out

Most little kids start on een (exclusive enteral nutrition) - formula only
No solid foods for 6-8 weeks to heal the gut

Some kids can use pediasure /kids boost (polymeric formula )

Most need a semi elemental formula (proteins are broken down )
These are peptamen jr and peptide

Others need things even further broken down such as elemental formula which is pure amino acids - your body breaks down food to amino acids so this eliminates the work for the intestine
You only need a few inches of healthy intestine woth elemental formula (neocate jr or elecare jr )
That said the majority of kids need an ng tube because elemental formula tastes horrid

Little kids have an easier time though
Ds surprised us and drinks neocate jr chocolate orally Daily

Once solid food is reintroduced the inflammation comes back so meds are needed
Most use formula only instead of steriod if possible
And add maintenance meds at the same time
So once off een and on supplemental formula with food
The maintence med can take over

5-asa are not approved for monotherapy for Crohns
Some GI try them by equate them to giving aspirin for a brain tumor

Most need immunosuppressants or biologics
Immunosuppressants- doctors are trying methotrexate more now since 6-mp/imuran
Have a high risk of lymphoma

Methotrexate has been used for years in kids as young as 2 for juvenile arthritis so has s strong safety profile

Biologics the main stays are remicade and humira
Remicade can be changed as the kid grows so despite gaining weight and growing
The kiddo can get the same equivalent dose
Humira only has two doses regardless of a growing child


Ds has been on all levels of drugs
Started with the mildest but least effective
And was still sick for about a year as we worked up to remicade where he finally got relief

Hope scopes give you answers

Hugs

Tagging Maya142
Tesscom
Crohnsinct
Mehita
Jmrogers
 
Welcome but sorry you had to search us out.
We're up here in northern Michigan.

My dd was dx at 3. It took about a year to get answers to what was happening.

I second what mlp said above.
You'll get lots of advice from family and friends on what to do.
Remember there is no cure for ibd.
Diet can help but doesn't treat the disease.
This is coming from a mama that tried everything before the medicine.

Please ask any questions. We're here to help.
 
THANk thank you farmwife and my little penguin!(sort not sure if I’m tagging correctly first time on forum) It’s good just to hear from other parents after hearing from so many there’s no way he’s too young. I have soo many questions. Mostly about care and if you sought out treatments from certain hospitals etc. experiences etc and following any diets like anti inflammatory. Again no certain dx yet but it’s all adding up hoping to do imaging soon. Is the feeding een for kids not gaining ? My son is he’s just so young I don’t know if any foods bother him. Seems to have one big vomiting ep a week thx ;)
 
Diets even anti inflammatory Do NOT fix kids woth crohns
Adults are different so some adults get away with diet alone
Een (formula only - no solid food for 6-8 weeks)
Is used in kids to heal the gut
But once solid is reintroduced then the inflammation comes back
So it is used while you start maintainence meds (methotrexate or biologics )
So the meds have time to build up
Methotrexate Takes 8-12 weeks to start working
Remicade takes 6 weeks to start working
Humira takes 3-5 months to start working
So een calms the gut down while you wait

If you continue with some formula in addition to food
After the 6-8 weeks of een
And have a maintence med started
Then you tend to see weight gain

Ds drinks 50% of his calories from neocate jr
Plus solid food
In addition to his biologics (Stelara ) and methotrexate
As meds

This lets him keep a healthy weight and grow well


He used to vomit once a week or so at dx
We started een -peptamen jr only
No solid foods for 9 weeks
He stopped vomiting
We started food again afterwards with a small amount of peptamen jr
He still vomited despite being on 6-mp meds
Switched to just methotrexate same thing
Until we added steriods
Every time we stopped steriods he would vomit again
Switched to remicade and stopped steriods
Vomiting finally stopped for good
Took a year of trying meds


You will need an upper endoscopy as well as a full colonoscopy plus MRE to know what is going on
Diet changes are not recommended prior to the colonoscopy since there are other gut diseases that may be temporarily “fixed” and you need to know what is really going on
 
Thank you so much ! So so newto all of this. And although I have some knowledge from a family member He is an adult. Have you been happy with your child’s care? I’m curious about different hospitals and drs I’ve heard so many times my son is too young. But we have no other Answrs yet they ordered upper and lower today plus mre. Think small intestine bc of symptoms and workups (his inflammatory markets haven’t been elevated.. other symptoms consistent). But hard to know. Thank you so much for the advice !!


QUOTE=my little penguin;997118]Diets even anti inflammatory Do NOT fix kids woth crohns
Adults are different so some adults get away with diet alone
Een (formula only - no solid food for 6-8 weeks)
Is used in kids to heal the gut
But once solid is reintroduced then the inflammation comes back
So it is used while you start maintainence meds (methotrexate or biologics )
So the meds have time to build up
Methotrexate Takes 8-12 weeks to start working
Remicade takes 6 weeks to start working
Humira takes 3-5 months to start working
So een calms the gut down while you wait

If you continue with some formula in addition to food
After the 6-8 weeks of een
And have a maintence med started
Then you tend to see weight gain

Ds drinks 50% of his calories from neocate jr
Plus solid food
In addition to his biologics (Stelara ) and methotrexate
As meds

This lets him keep a healthy weight and grow well


He used to vomit once a week or so at dx
We started een -peptamen jr only
No solid foods for 9 weeks
He stopped vomiting
We started food again afterwards with a small amount of peptamen jr
He still vomited despite being on 6-mp meds
Switched to just methotrexate same thing
Until we added steriods
Every time we stopped steriods he would vomit again
Switched to remicade and stopped steriods
Vomiting finally stopped for good
Took a year of trying meds


You will need an upper endoscopy as well as a full colonoscopy plus MRE to know what is going on
Diet changes are not recommended prior to the colonoscopy since there are other gut diseases that may be temporarily “fixed” and you need to know what is really going on[/QUOTE]
 
I go to Devos in Grand Rapids.
We love it there.
But like you we heard a lot of excuses on why it can't be this or that.
C.s. Motts is a good hospital.
We've also been to Mayo Clinic.

My Grace never showed anything in her blood. Labs mostly normal, no diarrhea but constipation instead.
Scopes with biopsies were the only thing to show the issue.

It's ok to get a second opinion.
Her first gi and I didn't hit it off well because he didn't believe me. I never fully trusted him. However, others had great success with him. I've learned to move on and not worry about hurting someones feelings.

Its my kid and I have to do what is best.
 
THANk you! Sorry you have had to go through his as well. It’s especially frustrating when you hear the excuses. Did you initially have Grace seen at Mott? I have so many questions sorry . They agreed to test today and said testing is done 2 separate days (was this your case?) one day MrE and one day scope? So glad you’ve found a dr you really like. I think that’s what I’m really hoping to find
 
Ds is being tested again
As a check up on his disease
We have his scopes schedule on a Wednesday and MRE on the next day Thursday

In the past we have done the MRE and few days later the scope

So the order doesn’t matter
You can’t do both the same day
 
Hi and welcome! You have been given great advice, so all I will add is that at our children's hospital, if a family wants to try diet instead of medications, the child would have to be monitored very carefully and if there was no improvement in 4-6 weeks, then a medication would be added.

Generally, doing diet only is not recommended for MOST kids. For kids with mild disease, it sometimes works. But for most kids, a medication or a combination of medications are needed.

The exception to that is EEN (100% formula). That does work well but only while the child is on formula and no food. Once food is added, the inflammation returns. So it is often used in addition to a maintenance med - EEN induces remission and the maintenance med maintains it.

IBD in kids tends to be more aggressive and Very Early Onset IBD (VEO IBD) is even more aggressive and difficult to treat. Often biologics like Remicade and Humira are used to control the inflammation. The goal is to prevent complications from inflammation like abscesses, fistulae, strictures etc.

My daughter was much older when she was diagnosed - 16 - but was put on Remicade and MTX immediately. It took 3-4 infusions before she felt better and after 8 months, her scopes looked MUCH better. All the ulcers in her colon had healed and the inflammation in her TI was much better. It was an amazing improvement.

As for hospitals, it doesn't hurt to get a second opinion. Some hospitals will do a record review so you don't actually have to go to the hospital physically. The top 3 pediatric IBD centers are at Boston Children's, The Children's Hospital of Philadelphia and Cincinnati Children's.
 
Thank you so much Maya142! This is great advice and I am open to meds if he needs of course. I would really like to take our son to a top Hosp my concern is travel if when a flare presents. Do you live near your hospital or did you take to one of these top 3 to start? And I’m so glad to hear of your daughters success. Just out of curiosity were her symptoms really severe to begin ? I might be premature in join g this group as we just had scope and Mre finally ordered yesterday.. thanks again
 
OK MORE questions sorry ! They just called today to schedule scopes. And said 2 days before liquid only diet and day before cLear liquid only !! How on earth do you do this w a 2 year old ?!? He will not drink Gatorade or juice pediasure boost (we’ve tried it all) etc has to have milk to sleep so basically hey want him t fast day before?? Is this standard or imdid you have any diff experiences (maybe I’m being too high maintenance but I think it’s awfully difficult for a young kid thanks
 
We've never been to Motts but my sister with her two kids have.
It is a highly rated hospital.
Cincinnati is one of the best pediatric ibd centers in the country. If you want a second opinion that's a good one.
I think Boston is also. Maya142 I think knows a few more.
 
So is common to fast day before
Your cleaning out the intestine
Nothing you can’t see through so no milk of orange juice etc....
Most give you a list of what is allowed
Popsicles (no blue green purple le or red)
Kool aid (makes a clear version ) in a powder can of cherry and lemonade so he can drink and have icee to chew
Pedialtye clear (they have apple flavored juice boxes )
Clear fat free broth are allowed by some

Most have you mix a large amount of Gatorade/pedialtye woth miralax
The day of clean out
The plus laxative
Every GI office is different
They have an under 7 or under 4 clean out sheet with instructions

The child will literally be going to the bathroom all day and will not want to eat
Clean out day is worse than the scope
Some kids vomit due to the liquids

Typically they allow a light breakfast at 8 am
Of toast dry with a scrambled egg
Then nothing afterwards

Most parents do low residue a few days before
In his case all liquid

Bum cream or diaper cream is a must
We use calmoseptine found behind the pharmacy counter
Flushable wipes

Once the clean out starts they really don’t want to eat
Be sure to have a GI number to call after the office closes if you have difficulty with the clean out
Little kids don’t have anything by mouth after midnight the day of the scope
But their scopes are typically first
Older kids have to wait till almost the end of the work day
Around 2-3 pm
Definitely tricky at best
Stock up on clear fluids now

Water doesn’t count
They need calories. And electrolytes
Because it is the worst diarrhea they ever had
 
THANKS !! So Ineresting that his says reg diet day before and noon clear and clean out ... seems so much mkre reasonable
 
Thank you so much Maya142! This is great advice and I am open to meds if he needs of course. I would really like to take our son to a top Hosp my concern is travel if when a flare presents. Do you live near your hospital or did you take to one of these top 3 to start? And I’m so glad to hear of your daughters success. Just out of curiosity were her symptoms really severe to begin ? I might be premature in join g this group as we just had scope and Mre finally ordered yesterday.. thanks again
Click to expand...

We live close enough that we went to one of the top 3 hospitals. We initially went to one closer to home but switched pretty quickly.

My daughter symptoms when she was diagnosed weren't too bad - abdominal pain, weight loss and constipation. We honestly thought we were doing the scopes to rule out Crohn's. We had NO idea that they'd come back showing ulcers and that biopsies would confirm Crohn's.
 
ThaNks and I’m sorry to hear It turned out like this for you guys, hoping your daughter is feeling well .. I’m still hoping we can rule out but I’m not holding my breath and this point which is why I’m trying to gather resources and have an idea of what I’m doing . We live near a great hospital but I do notice a big difference in the top 3 vs ours, especially in care of young kids.
 
Very early onset ibd is extremely rare my hw too big three have seen more cases
Verse the local ones may have one case in their career
It is also extremely difficult to treat

We have gotten more than one second opinion at the big three
Just so we were sure and our local doc was sure
 
Sorry I missed this tag. You have been given great advice. I just want to add that if you don't live a commutable distance to a major IBD center it helps if your hospital is a part of the Improve Care Now Network. This is a network of hospitals that share experience and knowledge to improve the care delivered at all hospitals for IBD kids.

About Diet. True it usually does not control disease although there is MUCH research being done in this field so hopefully some day we will learn something. We have only had one member here who has a son who has disease controlled with diet alone paging Optimistic but I think he was much older at dx.

We have had great results using the anti inflammatory diet along with Remicade. Whenever my daughter goes off the diet her biomarkers change and our GI asks about her diet. I personally think diet is important to protect their other organs and systems given the drugs that we often have to give them.
 
Thank you very much for your advice and reply. We live in an bc arbor however I’m not sure Mott is considered a major ibd center for Kids this age or not. we scope this wed so will have more answrs. Did anyone have a sort of “unclassic” Case just long history of fevers. Some abnormal bloodwork and anemia without the bloody stools and weight loss ?
 
One of my daughters just had a little constipation and some stomach pain. Perfectly normal blood labs and growth. This went on for years. Finally her weight gain and growth stalled and that is when we investigated and found Crohn's.
 
It took us a year to find the therapy that would work for her but yes she is doing great!

My other daughter who had a very classic and dramatic start to the disease took about 6 months to sort out a therapy that would work. She did very well for 5 years and only now is having a flare of sorts that we are trying to treat and figure out. Even with this flare she is living a very full and productive life. Off at college clear across the country, getting great grades and a member of the university club swim team and going to nationals.

The beginning is the scariest part. It gets a lot better and you get better at handling it.
 
OH that’s THATS sobgreat to hear a big congrats to her! I agree the beginning is frightening. I wonder if super common in siblings and can they test on them prior to symptoms or just have to wait. My kids are twins, but fraternal so I’m assuming a similar likelihood of another sibling having? I’m so sorry you’ve had to go through this x2
 
No it is not super common for siblings to have the disease although there is a genetic component to the disease. Our GI explained that a regular person walking around has a 1% chance of getting IBD and if you have a sibling with the disease your chances go up to 5%. So a bit of an increase but chances are still low overall. The hospital we used had 700 IBD patients and our family was one of only three with multiples.

Currently there re no tests to determine who will or will not get the disease. My girls (3) were all part of the GEM (Genetics, Environment, Microbiome) study when my first was diagnosed. The study Looks at patients and their siblings at dx. They asked us a million questions and took fecal and blood samples. They then froze the sibling samples and send follow up questionnaires every year. If a sibling is subsequently diagnosed then they pull the samples and question answers to see if there is a clue somewhere.
 
Interesting thanks ! How terrible was getting 32 oz of miralax in for scope prep? I honestly have no clue how he will take it
 
He will have pretty bad diarrhea - make sure you have diaper cream or something like that to protect his bottom. We used Desitin but Calmoseptine is another popular cream that works well.

To give you some idea of how well it cleans you out - my daughter used blue gatorade for the prep and by the end of the prep, her stools were just blue watery liquid! It was quite a shock when we saw blue stools :lol:.

He will spend a lot of time in the bathroom - TV shows or movies on an ipad were what my daughter used to pass the time.

Some kids get nauseous and vomit - that's not unusual. It is a lot of liquid for them to drink.

But the prep is definitely the worst part of the scope - once that is over, it is just a nap for the procedure. At most children's hospitals, they will even put the child to sleep before putting in an IV.

Take a change of clothes for your kiddo - he may have diarrhea on the way there or on the way back.
 
Thanks ! It’s a 2 day cleanse liquids tom and clear all day tues w scopes on wed... seems so long and a lot to ask of a 2 yo ... blue Gatorade sounds great they told me no dyes at all which seems to eliminate everything. These are super helpful tips
 
You can get clear Pedialyte - we used that for one scope. Generally they say most colors are ok, just no red or purple. Some GIs also say no blue, but everyone seems to be given slightly different instructions.

That is a lot for a 2 year old - we usually just have one day of no food, just clear liquids. That is prep day.

Some docs do make you do a longer prep where they put the child on a low residue diet for a couple days or, like your son's doctor, put them on a liquid diet for a day or two. It is meant to make the prep easier.

I'm going to tag some parents with younger kids who might have some ideas for you - to be honest, since my daughter was 16, I have no idea how to get a 2 yo to drink that much Pedialyte/Gatorade!

Tagging Pilgrim, Farmwife, my little penguin, polly13
 
THANSK THey all gave aweesme advice just seems so hard now that we get close to actually make him drink... idk why I didn’t think of pedialyte ! THANks
 
Organic Gatorade all flavors are clear
Pediltye nakes clear “apple juice “ boxes
Koolaid powder (can) makes clear cherry and lemonade which can be made into popsicles and icee etc...,
Most allow clear fat free broth
Is he getting miralax /ducolax as well?
Some just do miralax for a few days
All depends
Haven’t heard of clears for two days straight through

http://www.chop.edu/centers-program...and-diagnostic-center/colonoscopy-preparation

https://www.seattlechildrens.org/pdf/PE929.pdf

http://www.nationwidechildrens.org/colonoscopy-with-general-anesthesia---infants-and-toddlers
 
THX! I’ve never seen organic Gatorade or the juice boxes will check tomorrow. Sorry it’s one day all liquid and one day cLear with the 4 capfuls of miralax
 
That’s easier on your kiddos gut
Soup
Microwave potatoes /zucchini peeled and chopped if your child like green ) /onion powder
With vegetable broth - olive oil /salt
Cook till boiling
Then let it cool
Place in a blender till smooth

Organic Gatorade is at target ;)
And some grocery stores

Pedialtye has “popsicles “ which can be used
“Juice “ pedialtye May be powder packets placed in a water bottle
It’s been a while
My kiddo is now 14
But started scopes at 6
 

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