Diagnoses

[Biggidybates]

Hello... my son Jack, age 5, was given a diagnosis after scopes and biopsies of mild to moderate crohns colitis. We have scheduled a MRI for the small bowl to see if there are any signs of the disease.

Given Jack’s age, it is hard finding much information. I have extensively researched the internet and my heart goes out to all of the parents dealing with this. I am not sure what to expect and honestly what to do. His Gastro doc has put Jack on mild medication, Pentasa, due to mildness of the disease and his symptoms. My mother in law has Crohns and has had success with Pentasa. Our son’s only symptom has been soft stools and occasional mild abdominal pain. He had c-diff 5 months ago which we treated. This is what alerted his pediatrician and prompted us to see a specialist.

I know that no 2 people experience this disease the same. I feel so fortunate that my son is not in pain and has a healthy appetite. He has always been in the 100% for height and 90% for weight. In his last check up, after c-diff, he is still in the 100% for height, but dropped to the 87% for weight. I guess I am looking for success stories for kids Jack’s age and affirmation that everything will be okay and that my son will be able to live a somewhat normal life. Everything I am reading is tearing me up. I feel as I am going through this terrible disease myself as my heart and stomach hurt so much for what my son may face and for what other children with crohns or any disease face.

Please, please, please... tell me that things will be okay based on your success stories. I have read enough negatives and really need to hear from other parents and children diagnosed around Jack’s age that there is hope and that young children with this disease can live somewhat normal, happy and productive lives. At a very low point in my life right now. I thank you in advance for the time you took to read my post.

Chris

 

[my little penguin]

Hugs
Your child has very early onset Crohns (kids dx at age 6 or less )
Over time that kind is the most difficult to treat and severe
Kids Crohns changes over 10 years from dx

Ds was dx at age 7 si he has early onset Crohns
He is now almost 15 so 8 years

Adult Crohns is completely different than kiddie Crohns
Pentasa has not proven to be effective in kiddie Crohns since it ONLY TREATS the TOP LAYER of the intestine- Crohns affects the full thickness so it lets inflammation simmer below

That said they tried Pentasa with Ds as well
Most GI equate it to giving aspirin for a brain tumor
Not going to hurt but not going to help much either

The fact your kiddo is losing weight /not gaining means inflammation is still on going
Is he on steroids as well ???

Een is a good option for kids especially little kids

Een is exclusive enteral nutrition
Formula only no solid food for 6-9 weeks to induce remission

Ds started this at age 7 woth Peptamen Jr a semi elemental formula
After 6-8 weeks he used it as a supplement plus good
Highly recommend this while they are little and don’t know they have a choice

Ds still drinks 50% of his calories from formula (neocate jr -elemental formula)
This has allowed him to stay the same height and weight as his peers even in puberty
Other Crohns boys he knows still look about 9 even though they are 15
Because they refuse formula

The first year or two is hard till you find the right med combo
After that not too bad

Given VEO Crohns is extremely rare please get a second opinion
At one of the big three pediatric ibd centers

Boston children’s
Children of Philadelphia
Cincinnati children’s
They will have seen more than one case


Veo Crohns needs genetic testing to verify
That it’s not one of the genetic disorders that mimic Crohns in very little kids

Emory university does those tests


Big hugs
OT does and will get better

 

[crohnsinct]

Hi there and welcome to the group although I am sorry you have to be here.

First, be careful about reading too much on the internet. Usually the people who post are the o es having trouble and looking for help. The people who are doing great are off living their happy very normal lives.

I have two daughters with Crohns and it is absolutely possible to live complete normal lives with the disease. My oldest was dx'd at 12 in the ICU but once we knew she had the disease and treated it she has lived a graT life. Sure there have been ups and downs but every kid Crohns or not has things that happen...torn acl's that take them out of the game, mono, flu etc. she was a competitive swimmer and runner all the way through high school. Three season varsity athlete, honor society, in church youth group, mission trips etc. she has been in a bit of a flare that we have been chasing for three years but it hasn't stopped her from doing anything. She just finished her freshman year in college clear across the country and went to national championships for club swimming.

My younger daughter was dx'd at 11. An honor student and
Athlete at the high school. She has only had tiny blips here and there.

Pentasa is generally more effective in uc than Crohns but if the crohn's is confined to the colon I have heard of it being used and working. Perhaps they aren't ready to declare full on Crohns just yet but the MRE might change that if disease is found in the small bowel. My only warning would be not to get too attached to any treatment that you don't see the need to change.

It could take about a year to hit your stride but you will get there. Be gentle with yourself and family. Find a GI you trust. I would second MLP's advice of a second opinion even if just to set your mind at ease that you are on the right treatment path. The weight could be from c diff but could be inflammation. Time will tell but keep your eye on it.

 

[Jelly loves Peanut butter]

I am sorry you and your son have to go down this road. My son was diagnosed with moderate crohns at age 9, he is now11. He too started with c dif which also led us to the pediatric GI. He was started on prednisone and 6MP but now is on remicade and methotrexate; had to make the med change due to a diagnosis of juvenile spondyloarthritis last year. He is currently doing great and is symptom free, due for his next GI visit.

You will gain a lot of knowledge and support through this forum. MLP has given some great info and I’m sure other parents will be along soon.

Best wishes and prayers to you and your son.

By the way, it’s been 2 years since my son’s diagnosis and He is doing fantastic! Hang in there

 

[pdx]

Hi Chris,

I'm so sorry that you're feeling so low right now--I can't imagine anyone feeling any different after their child has just been diagnosed with a chronic disease like Crohn's. I can still remember how I felt the first 6 months, especially at the beginning when my daughter was in and out of the hospital several times.

It does get so much better as time passes. Yes, there are kids who find an effective treatment, and they and their families hardly think about Crohn's. My daughter's case isn't like that--she's had flares pretty much every year, she still hates her Remicade infusions, and every week when she takes her methotrexate, she feels tired and a little nauseated the next day. So we do think about Crohn's almost every day, and our lives are different than it would be if she didn't have it.

But... it's still a very good life. Yes, she has missed many days of school every year, but she's still a straight A student taking challenging classes that she really enjoys. Band is her passion, and her band finished high in the state band competition last year. She doesn't participate in the marching band, though, due to Crohn's. Probably the biggest compromise coming up is that she's thinking about staying in our city for college, so that we can keep helping her at her Remicade infusions. But I'm confident that she'll still get a great education.

By the way, my daughter was diagnosed at age 12, but she had been showing symptoms since she was 7. So not quite as early onset as your son's, but still early.

Hang in there! :ghug:

 

[Maya142]

My kiddo was diagnosed at 16. Her only symptoms were abdominal pain and weight loss, along with occasional constipation. We were sure we were ruling out Crohn's. It was a huge shock when her GI called, saying that the biopsies absolutely confirmed Crohn's.

She was put on Remicade and MTX immediately, because she was already on a biologic for her juvenile arthritis. Her Crohn's was treated aggressively, because we made the mistake of not treating her arthritis aggressively and she now has severe arthritis that has been debilatating and has developed a whole host of other problems.

Anyway, so she was put on Remicade and MTX. She had inflammation through her colon and in her terminal ileum and stomach. She had small ulcers through her colon and her TI was friable and bleeding when biopsied.

She was also put on Entocort to get the abdominal pain under control. It worked well for her. She tried EEN, but it was too hard for her, but it tends to be easier for younger kids. She did do supplemental EN through an NG tube (and then a surgically placed tube in her abdomen when we realized she was going to need long-term enteral nutrition) and that helped her go from dangerously underweight to a healthy weight. She even grew half an inch which surprised us because at 16, we thought she was done growing!

It took a few dose and frequency adjustments, but she did well on Remicade. 8 months after her first scopes, we redid them. Her colon looked absolutely perfect. According to her GI, it was "beautiful" and her TI looked a little red, but MUCH better. Biopsies were CLEAN through her colon and showed very mild inflammation in her TI!

From a Crohn's perspective (she has many other conditions), she has lived a pretty normal life. Once we got the weight issue under control, which did take a while (partially because she was a stubborn teenager), she has been ok. She has needed a biologic for her Crohn's - when we tried stepping down to an immunomodulator, she flared.

I would urge you to seek out a second opinion at one of the big IBD centers, just because Very Early Onset IBD can be tough to treat. And like has been said, Pentasa only treats the top layer of the intestine and Crohn's affects ALL layers. And since he is so young, he is at risk for severe disease.

But a GOOD, FULL life is very possible with Crohn's. We have many kids here who once they got onto the right meds, thrived, grew up and went to college. They played sports and played instruments in the band. Check out the Success Stories thread. It will give you peace of mind.

My daughter is in college and her Crohn's has not hampered her. Her arthritis has, because it is severe, but because her Crohn's was treated early and aggressively, it has stayed mild and that has been a huge blessing.

My advice would be to remember that the first year, when you are adjusting to your "new normal" will be hard. And to seek out the help of a child psychologist if you think your child needs one. Blood draws and IVs are hard on kids. There is no shame in that. Coping with a chronic illness is HARD and your child may need a little help - mine did and says it was the best thing we ever did for her.

And research as much as you can - there is lots of info here. And lots of moms willing to answer any question you have.

Good luck and hang in there. It WILL get better.

 

[Biggidybates]

I thank everyone for your replies. We will be seeking out 2nd opinion at either Cincinnati or Philly. Just don’t know when they will be able to fit us in. We live be in Tampa, so we will have to coordinate accordingly. Our son’s health is our #1 priority so we will do whatever it takes to make sure he is healthy and happy.

 

[crohnsinct]

If you haven't chosen yet, CHOA (Children's Hospital of Atlanta) has a well respected and established pediatric IBD program and is closer to you. Might be worth a visit there...Emory is close to there also so two birds with one stone.

 

[Maya142]

We have had a good experience at Philly. If you PM me (private message) then I can give you names of GIs.

I think my little penguin has seen some GIs at Cincinnati for a second opinion. She may be able to tell you more about Cincinnati.

 

[Biggidybates]

Again. Thank you everyone for your care and support. After much research and discussion with family, we will be seeking a second opinion from CHOP. I have already been in touch with them and the plan is to head up there in September. I am already feeling much better knowing top professionals in the area of VEO will be looking and caring after my son’s journey.

Maya... once I figure out how to do a PM on here I will contact you. Thanks!

 

[Maya142]

Biggidybates, I will contact you . Don't worry about it!

 

[Biggidybates]

Maya... I think something came through from you but I accidentally cancelled it???

 

[Maya142]

If you look under private messages - top right corner of your screen, you can go back and read what I sent you. If you have a new private message, that will pop up on your screen and you can choose to see it then or later.

It takes a little while to get the hang of it. I find navigating the forum much easier on my computer than on my phone or tablet (but my daughters say that's because I'm "old" ).

 

[SoccerMom47]

I love that the long time posters in this forum jumped in to support you! Sorry you are here. We were in that hellish roller coaster initial dx period just shortly before you. My son is older, 16, but if it helps, he has been treated with remicade since the end of May and gained 20 lbs in that short time frame. He feels better and his blood work has returned to normal. I know we aren't a long term success story (yet!) but I do remember researching and desperately seeking positive stories just a few short months ago.

 

[Maya142]

SoccerMom47, it is so nice to hear even new success stories! If you feel like sharing your son's story, or asking questions or for support, feel free to make a new thread on the Parents' Forum. It's the best way to share a story - otherwise they get kind of lost in other, older threads. We will all jump to in support you too! There are a number of parents I can think of with teenagers or young adults, some boys and some girls. My girls loved (and still love) soccer, so you're not alone on that front either!

I hope your kiddo is enjoying the World Cup!!!

 

[SoccerMom47]

Thanks Maya142! In truth I haven't needed to - this site is like an encyclopedia! I have literally scoured through all the stories. As a result - I took my son to a good second opinion hospital (Boston) and we made the very difficult decision to start Remicade - but I was given strength and courage through all the stories. So you all have been helpful already, and I am so thankful. I am struggling now though with a sibling issue, so I think I will start a thread.

 

[SoccerMom47]

And yes - we are all enjoying the world cup!!

 

[mjacobs]

My 15 years old got diagnosed with Crohn’s Disease recently. Being undiagnosed for so many years has made Crohn’s hard to treat. For her, the symptoms are weight loss, fatigue, red or itchy eyes, and inflamed or bumpy skin.Seeing her I now know these symptoms cause fatigue I have been reading about her symptoms and complications on reddit, everydayhealth and this helps me solve all my doubts regarding her health. I am looking at advice from parents who have some special guidelines or diets that can help ease her flare.