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Cvc107

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Dec 15, 2015
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Hello All, my son was diagnosed at 4 with Crohns disease after 3 week long hospital stays and a major run around. We are finally in an ok place and love our GI team. He has been on prednisone to push him into remission (hes been in a constant flare up since last may with the last one being horrible). He also is on antibiotics. He is pretty aware of his Crohns and knows thats what makes his tummy hurt. Has anyone had experience with their child not going to the bathroom with Crohns? He has been through alot and pretty much wont go without miralax.

Anyway- thanks for reading our little story :)
 
What maintainance meds does he take ?
Pred is a rescue drug and can't be used long term .
Kids are automatically in the moderate to severe category for most which means immunosuppressants (6-mp /Aza/Mtx ) minimum .
Most progress to biologics within a few years . Some start out top down to keep the intestine as healthy as possible as long as possible so biologics are used first .
Some docs try 5-Asa first ( Pentasa asacol etc) but these are not recommended as a monotherapy for crohns since it only treats the top layer .

My kiddo has used miralax daily since age 6. He was dx at age 7 with crohns and is now 12.
He has constipation with his crohns and has gone through all of the types of meds
 
How old is he now?

My son was diagnosed 7 weeks ago. He also had a fistula repair at the time of diagnosis, so we had to make sure he was having regular, soft bowel movements. For a kid who has never exactly been regular, it was a challenge. We've taken out all dairy and starchy foods (grains and potatoes) and make sure he eats an apple every day and drinks plenty of water. He was also on a stool softener (colace) for the first few weeks. He's been doing really well the last two or three weeks, but it was difficult for him before that.

I hope your little one finds some relief very soon! The constant antibiotics and steroids sound hardcore for a little one.
 
Food4thought
Does your Gi know you have taken out all grains and starches as well as giving raw apples ( extra fiber can be hard on the gut and can cause issues in some kids )?
Limiting foods without formula can cause poor weight gain which is why most of they are using paleo scd etc in kids supplement with some type of formula

Tagging optimistic
 
He is only on the prednisone (slow taper) and antibiotics right now. We are supposed to start another med within the next week or so. He drinks about 2-3 pediasures a day which have helped him gain a good amount of weight. My son is 4 still only diagnosed this last January. His symptoms started when he was 3 and progressed pretty fast. For a while we got the whole he is constipated with a virus or he had some other illness but it kept coming back and each time stronger. I wasnt sure if the constipation was typical of Crohn's because most descriptions are the opposite. The GI he goes to is a part of a team out of Mt Sinai in manhattan and we met with a nutrionist who said at this time to watch for what is aggravating his belly but he isnt limited in diet, although high fiber is a no go right now. We limit his dairy because in general it causes him to be more gassy and crampy. Its been scary because everyone kept saying (when he was 3) this cant be Crohn's because he was so young (even though he had every symptom except loose poop). I guess im just looking for support and some sort of overall assurance. Im petrified because he starts kindergarten in September and its just worries me because he will always say hes ok unless the pain becomes excruciating. I was reading previous posts and fatigue and joint pain seem common, is this Crohns? Or something else brought on by Crohns? I know that every case is different but in your experiences. He complains of his legs hurting or if he is super active one day the next day he is completely shot and sore.
 
There are a number of extra intestinal manifestations(EIMs) that can come along with CD.

Some affect joints, eyes or skin.

Some EIMs flare concurrently with active inflammation of his CD other EIMs flare independently of active CD.

Here is a link to a medical article describing the EIMs that can be associated with CD

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3127025/
 
my little penguin said:
Food4thought
Does your Gi know you have taken out all grains and starches as well as giving raw apples ( extra fiber can be hard on the gut and can cause issues in some kids )?
Limiting foods without formula can cause poor weight gain which is why most of they are using paleo scd etc in kids supplement with some type of formula

Tagging optimistic
Click to expand...
Yeah, he basically said, "Do what you want. Diet doesn't matter." I've really been flailing here. The dietician in the hospital wasn't helpful either. She's the one who said to keep a food journal and just experiment because every Crohn's sufferer will respond to food differently. We have an appointment with the nutritionist in 2 weeks.

He won't drink Pediasure, Ensure, or Boost because he says they really upset his stomach (and he gets bad gas after). He was living on those pre-diagnosis, but I wonder if they contributed to his hospitalization because they make him feel so bad. He'll eat tons of meat and cooked veggies and stews no problem. Still gaining weight so far, but don't think I haven't worried a lot about it.
 
Welcome to the forum, sorry you had a need for it. I am mostly a lurker here but had to stop in and say hi! I'm a former Westchester County resident and we used to go to Mt. Sinai as well (Dr. Pittman). I don't have much in the way of advice as thankfully my son is asymptotic. In any event, if you are interested in any dietary changes, there is a great IBD nutritionist in Pelham that has devoted himself to helping IBD children. PM me if you need more info. Not to say that it is the end all be all, with him being so young I'd imagine diet alone won't be enough.
 
MamaHenn said:
Welcome to the forum, sorry you had a need for it. I am mostly a lurker here but had to stop in and say hi! I'm a former Westchester County resident and we used to go to Mt. Sinai as well (Dr. Pittman). I don't have much in the way of advice as thankfully my son is asymptotic. In any event, if you are interested in any dietary changes, there is a great IBD nutritionist in Pelham that has devoted himself to helping IBD children. PM me if you need more info. Not to say that it is the end all be all, with him being so young I'd imagine diet alone won't be enough.
Click to expand...


We know Pittman! I believe she works with Dr. Benkov out of the IBD center in Mt. Sinai. Glad your son is asymptotic. Thank you for popping in and saying hi, its been hard because so many well meaning people just don't get it.
 
Our daughter was diagnosed at 3 with Crohn's and was considered constipated.

She rarely complains of pain. I think this is because she learned to tolerate the pain at such an early age. Maybe she never knew "normal".

There are a lot of kids here who are in some ways asymptomatic.

I just wanted to say hi. But also to address your concern about Kindergarten because we went through this same worry in the past year. Most important thing is to get a med regime that works. It took trying a few things for us and we finally landed on a biologic that works for her. She was then able to start school and do everything the other children do. She loves it. Normal is amazing. She starts late once a week because of her injection. She brings her formula to drink for snack. But everyone is used to it and it doesn't matter. I was surprised by how ok it all was and is.

First I hope you find treatment that works.
 
Pilgrim said:
Our daughter was diagnosed at 3 with Crohn's and was considered constipated.



She rarely complains of pain. I think this is because she learned to tolerate the pain at such an early age. Maybe she never knew "normal".



There are a lot of kids here who are in some ways asymptomatic.



I just wanted to say hi. But also to address your concern about Kindergarten because we went through this same worry in the past year. Most important thing is to get a med regime that works. It took trying a few things for us and we finally landed on a biologic that works for her. She was then able to start school and do everything the other children do. She loves it. Normal is amazing. She starts late once a week because of her injection. She brings her formula to drink for snack. But everyone is used to it and it doesn't matter. I was surprised by how ok it all was and is.



First I hope you find treatment that works.
Click to expand...


Thank you for sharing your daughters story with me. I never thought of it like that, the fact that hes only known this as normal. Hoping to be off predisone next week to get on a treatment plan,
 
You're welcome. I'm so glad you're here because it will be good to hear the progress of another young one. Your story sounds similar to ours which is hard to find in such an individual disease.

Our H also can have good days where she uses a lot of energy but the next day will be wiped out. Are you dealing with any anemia or vitamin/mineral deficiencies? Supplements as prescribed by GI have helped but some of that is the disease.
She used to complain of "crickely crackly feet" and "my feet hurt" then point to her knees and ankles. Crohn's has associated joint pain and sometimes arthritis. I remember thinking I'd have to push her in a stroller forever but she has more stamina now. Just to say it can get better.
 
Pilgrim said:
You're welcome. I'm so glad you're here because it will be good to hear the progress of another young one. Your story sounds similar to ours which is hard to find in such an individual disease.



Our H also can have good days where she uses a lot of energy but the next day will be wiped out. Are you dealing with any anemia or vitamin/mineral deficiencies? Supplements as prescribed by GI have helped but some of that is the disease.

She used to complain of "crickely crackly feet" and "my feet hurt" then point to her knees and ankles. Crohn's has associated joint pain and sometimes arthritis. I remember thinking I'd have to push her in a stroller forever but she has more stamina now. Just to say it can get better.
Click to expand...


Yes it has been rare to come across anyone with a child as young as he is. He has anemia and some vitamin deficiencies. The pediasure has helped a little with that. His biggest complaint is his knees hurting. He says they hurt all the time. He will play and run around to a point and then usually needs to be carried. These kids are such troopers. Its hard being so young I have to pay attention to everything he says but not dwell on it - you know? It would drive me nuts in the hospital they would ask him what hurts and he would just point to his belly button and they would keep prying for a more specific answer, I Mean he was 3, his stomach is his belly button. Ha. Not too sure where you are located but hope you have some beautiful weather :) its gorgeous outside here today.
 
We're in Canada. There are 15 cm of fresh snow and still falling. The kids were rolling around like puppies. So I won't complain!
 
Hi welcome to the forum! Sorry you had to find us but glad you did.
Our daughter also saw Dr. Benkov for a short time. We went to him for a second opinion. Wish we lived closer and could see him full time!
 
I'm sorry your son has been so sick, but glad he is finding someone who will take his symptoms seriously. I highly recommend seeing a pediatric rheumatologist to help sort out his joint issues.
 
Hi and a late welcome.
I have a young one also.
She was dx at 3 with ibd and 4 with arthritis. Her arthritis starred in her knees btw.
Has he seen a rheumatologist? If he's trending towards joint issues you want to jump on it fast!
Grace also trends towards constipation. She did 3 years of miralax (3 cap fulls).
Once she started Remicade she went back to normal.

I know it's a lot to take in.
My Grace is starting a 6 week hospital stay next week ( we had to push back a week because if the flu). If you have any questions ask away. I'll check in when I can.

Hugs
 
Farmwife said:
Hi and a late welcome.

I have a young one also.

She was dx at 3 with ibd and 4 with arthritis. Her arthritis starred in her knees btw.

Has he seen a rheumatologist? If he's trending towards joint issues you want to jump on it fast!

Grace also trends towards constipation. She did 3 years of miralax (3 cap fulls).

Once she started Remicade she went back to normal.



I know it's a lot to take in.

My Grace is starting a 6 week hospital stay next week ( we had to push back a week because if the flu). If you have any questions ask away. I'll check in when I can.



Hugs
Click to expand...


Wishing Grace a speedy recovery! Is Remicade intense for someone so young? Going to check out some pediatric rheums now. Waiting for Benkov to give me a call to discuss and see if he has any recommendations.
 
If you are going to NYC then HSS is great. My daughters both saw a pediatric rheumatologist there for a while (but the one we saw moved). However, we have seen two of the three ped. rheumatologists who are still there and liked them both.

Both my girls were diagnosed with JIA - specifically juvenile spondyloarthritis, the kind that is associated with Crohn's. One daughter started with arthritis in her knees, the other knees and ankles. Now both of them have many joints involved.

We have also been to Mount Sinai (just for a second opinion) but saw a different doctor. It was great though! I don't think they have pediatric rheumatologists, but I'm not sure. Morgan Stanley Children's Hospital and NYU Langone also definitely have pediatric rheumatology depts.

Both my girls are much older but have been on most of the biologics. Remicade is actually much easier than Humira for most kids - just an IV every 6-8 weeks usually (can be given as often as every 4 weeks). Humira is a painful shot given every 1-2 weeks, so most kids have a harder time with that. The Remicade infusions are actually not so bad - my girls enjoyed the time off school! They liked to relax and watch TV and take a nap. And the nurses fuss over the kids.

Good luck!
 
I looked into Maya's HSS rheumies and was very impressed with them. However, we needed a physician referral and our GI referred within our children's hospital. We have only met with our rheumy once but like her very much and she is Maya approved so far which in my book is gold. She is in Hartford off I84 so depending on how far up in Westchester you are.....PM me if you want her name...you will need a physician referral but hat shouldn't be hard.
 
Welcome to the forum from another former Westchester County resident!! Sorry your kiddo was diagnosed so young, but it may be a blessing in disguise. I was diagnosed at 7, a loooong time ago lol.......my doctor was out of Mr. Kisco, pretty good doctor at the time but boy have treatments come a long way since then.
 
One thing to note since your child was so young at dx
They should be checking for genetics for very early onset Ibd
There are specific treatments and diseases that mimic crohns in those dx under the age of 10
Emory university does some of the genetic testing
 
I can also PM you names if you need them. We have seen a ped. rheumatologist at Morgan Stanley and the two at HSS.
 
Thank you all for all your support and insight! Yes we had started the genetic testing before he was officially dx because I have an autoimmune disease (sarcoidosis). I stopped further testing bc at the time his dr treated him like a lab rat and wasnt treating him at all. She would prescribe antacids and thats it. The worst dr. Ugh! Anyway...Hartford is a ways up there - but we always appreciate referrals and would do the drive to be with a dr we are confident in. We had such a horrible experience with drs in the area because everyone was afraid to treat and thought i was a nut for insisting something more was at play other than the bs constipated song they were singing. We are still on this super slow taper of prednisone and about another month of antibiotics. We love the services at the IBD center through Benkov at Sinai. Going into the city is tough but well worth it. Jacob (my son) has put on a good 6lbs and just looks healthier. Hoping we can stay on this feel good train for a while. Hes had to go through and try to understand more than most adults can handle. I really cant express enough gratitude to you all for reaching out and sharing information and support. Really makes the world of difference to me [emoji4]❤️
 
so glad you have a doc you trust. That is half the battle. I have an eye on mount Sinai should we ever want to seek another opinion.

Even further than hartford BUT number one in country (says resident expert maya) is Boston. Childrens. They are actually up there in many specialties. You may find that you only have to go to your Rheumy 3 or 4 times a year so maybe the trip isn't too bad. But with hss so much closer and being so good I might start there.
 
Yes - if we weren't 5 hours from Boston, we'd go there! CHOP is also great. But HSS is good too - they now have a pediatric floor so much more kid-friendly. When we went, ped. rheumatology was with adult rheumatology and not great for kids.

We really did like the rheumatologists there though, better than the ones at Morgan Stanley.
 
I have to be monitored by an adult rhuemy and go once a yr, unless in a flare up then i go every week.

Spoke to GI, he felt the maintenance drug (which the name I cant remember right now - sorry newborn baby brain) he was planning on starting Jacob on would help treat joint pains but supports whatever decision I make on the rhuemy. His pediatrician initially really pushed the issue but then let up once we got the official diagnosis and heard my rant about not taking him to another dr so they can draw 8493030 bloods. At that time my then 3yr old had been hospitalized twice totaling 15 days, had 2 endo/colonoscopies, about 4 xrays, 2 ct scans with contrast, ultrasounds of everything, and countless viles of blood taken. He was under the care of - cardiology, infectious disease, gi, and immunologist. So i just felt like it was alot. Plus i was a huge 7 months pregnant. Up until Sinai, it was hard to find someone who remembers his age and thought of him as a child first. Sorry again for my rant nature, ive kept alot of my feelings bottled in because its just easier to cope that way. Im also very anxious about returning to work full time and being away from him. Everytime i thought we were ok, we would end up in a hospital.

So yea im a bit all over today.

Maya - CHOP is childrens hospital? (Sorry if question seems silly)
 
Yes, the Children's Hospital of Philadelphia.

HSS is not a pediatric hospital, but they do have a pediatric rheumatology and pediatric orthopedics dept. I can't remember if we needed a referral to go there, but we ended up seeing an orthopedist first for BOTH my girls (despite the fact that my husband has arthritis - Ankylosing Spondylitis...we were naively hoping it was a simple sports injury!).

Boston Children's is also wonderful but of course, quite a drive.

I messaged you the names of the doctors we saw at HSS - the message should be in your inbox.
 
You poor thing. As if all this weren't enough to deal with on it's own add in pregnancy and postpartum on top and recipe for disaster. Rant away. We have all been there and understand.

Joint issues could be IBD related. Fix the Ibd and you fix the joints. This happened with my older daughter. So it would be totally understandable to wait and see if once the ibd was totally controlled what happens with the joints. If they are still bothering him then it could run independently and you may need to do things differently.

Mlp says all the time "it is a marathon not a race". So true. With my younger daughter dx'd 1/15 she is still not in remission and has mysterious joint issues that so far no one wants to claim as their area.

Hang in there!

Was the drug methotrexate?
 
Just wanted to send my support. You've got a lot going on right now, and I hope that things get easier for your family soon. I hope that your son's treatment works well and quickly for him.
 
Hi! So sorry you're going through this. We actually have a lot in common (some of it unfortunately =(( )

I am also at Mt Sinai with my 3 y/o son and live in Riverdale BX. In his case, symptoms started at 2.5 (classic- I was not at all surprised when the GI confirmed it) and he was dx a month after turning 3. Our first GI was at Morgan Stan Children's hospital but she recommended I see Dubinsky @ Mt Sinai. I switched bc of the IBD center. I am extremely happy with everyone there. My son also has PSC and we think autoimmune hepatitis but not confirmed.

Right when my son was doing the worst, my daughter was born and we kept blaming his behavior and everything on the new sibling. He stayed a night after his first scopes and i had to leave my 2 month old who refused a bottle the whole time! Fast forward a year and we just started Entyvio last Monday. We have tried a bunch of stuff and he has been on prednisone much more than I like to think about but gained 7 lbs since last summer. Methotrexate was working but he had a bad reaction to it. Pentasa, canasa, sulfasalazine did nothing. We decided to pass on 6-MP but we might have to go on it for the hepatitis.

Anyway, I would love to talk anytime. I feel very emotional reading your posts because I can relate so much.
 
Sending some support your way too, RexMom. So sorry that both of you have children diagnosed so young.
 
Hi food4thought

I'm late responding to my Little pony's tag bc I had some log in issues.

My son is on scd which does limit a lot of foods. However, he keeps a good diary for our quarterly visits with the nutritionist. Every time we see her she runs percentages and makes adjustments based on what he needs to grow and get nutrients he needs. She even adjusts the minimum number of formula he needs. Are you working with a dietitian who knows IBD?
 
Optimistic said:
Hi food4thought

I'm late responding to my Little pony's tag bc I had some log in issues.

My son is on scd which does limit a lot of foods. However, he keeps a good diary for our quarterly visits with the nutritionist. Every time we see her she runs percentages and makes adjustments based on what he needs to grow and get nutrients he needs. She even adjusts the minimum number of formula he needs. Are you working with a dietitian who knows IBD?
Click to expand...

We were working with a nutritionist before diagnosis, and we have an appointment with her next Wednesday. My fingers are crossed that she's worked with IBD before, because I really liked her when she was helping us when we thought it was just a failure to thrive issue. Thanks for getting back to the tag. I do appreciate the support.

And sorry to the rest of you for the thread hijack. I'm so sorry to hear that things are so hard for such little ones. :(
 

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