My amazing son with the crohn

[JacksonsMom]

Hi all,
My son was just diagnosised with crohns disease last month, February 2016, he was 6, but just had his 7th birthday!
We have a great team at Seattle Childrens, I am so grateful for them!
Jackson is on a formula based diet, drinking 6 or more pedisure a day, and only eating a max of 350 calories a day from food on a scd meal plan, plus everything organic, meat has to be grass fed organic.
The second week on this diet I could definitely tell a difference, but then he got a stiff neck and everything went downhill. He's back to being super pale, pain in his stomach, legs, so irratable, doesn't want to stick to the diet, and no energy.
Hes taking pentasa, but I have a feeling he needs something more. I want him to feel better so badly, I wish I knew what to do, I wish I could take this disease on myself, instead of him.
We just started on this crazy road, and I'm stressed, and trying not to let him see this at the same time.
We go to an appointment this next Thursday and I have my list of items to bring up. This is day 9 of a stiff neck, we've already spent a day at children's tying to figure out that's about, and we still have no idea.
How do mom's deal with this, being a mom is hard enough then add a chronic disease to your child, I'm still trying to wrap mind around this. I feel like I need to home school, quit my job, focus everything on getting my son heathly.
Trying my best to stay postitve, but having my son tell me today that he just can't handle this anymore, talking about the pain, has me in tears and feeling helpless.
I made an appointment to talk to a great chulildrens couselor, I just hope and pray that he will start to feel better soon.

 

[ronroush7]

Welcome. I am sorry that you and your son are going through this. We have a section called Parents of Kids with IBD. You might want to post there also.

 

[my little penguin]

Here is the parents section
http://www.crohnsforum.com/forumdisplay.php?f=49

Pentasa is not approved as a monotherapy for crohns
Most Gi equate it to giving aspirin to a brain tumor patient
Not going to help too much but not going to hurt either

Ds was dx at age 7 and is now 12
He has tried all the meds and finally got relief after a year of trying different meds on biologics


Tagging
Clash
Tesscom
Maya142
Mehita
Crohnsinct
Farmwife
Pilgrim

 

[Clash]

My son was older but I do remember that horrible helplessness that I felt over him being in such pain before dx.

He was put on remicade straight away and his symptoms were gone after the first infusion.

He's a bit of a hard case though as although he is asymptomatic(has no symptoms) he continues to have chronic inflammation.

He's had a small bowel resection and now is on a new biologic and humira we are hoping for the best.

He leads an active life with job and full time college student so I am thankful that he is not experiencing symptoms and I am hopeful his insides will soon match up with his outside!

 

[crohnsinct]

With 6 cans of formula a day at an estimate of 250 calories each and 350 calories of food, your son is at 80/20 formula to food. For some kids the 80/20 can get them to remission however a majority of kids do have to do 100% exclusive enteral nutrition with water and maybe a piece of gum a day being the only allowed additions, regardless of the diet. My younger daughter tried a variation of the SCD (IBD-AID) after one of her EEN periods and with stronger meds and it was not enough to keep her in remission.

It is also possible that the formula just isn't the right one for your son. There are many varieties and maybe he just needs one that is more broken down.

Pentasa is the lowest level drug for Crohn's and is typically not very affective especially in moderate to severe Crohn's and since your son was dx'd as a child he is automatically placed in the moderate to severe category.

However, my immediate concern would be inducing remission either with steroids and EEN and from my sig you can tell we are EEN fans in our house. I would ask the doc what changes could be made to the formula plan to get him into a good remission and then discuss the appropriate maintenance meds with the doc.

Most of the higher level meds: immunomodulators (mid level) and biologics (top tier) are going to need time to build to therapeutic levels so the sooner you address med concerns the better as at the end of the EEN period you would like to have the maintenance drug be at therapeutic level and able to take over and keep the tract healed.

It is a lot to process all at once. Be gentle with yourself. It takes a while to get used to everything but trust me in a year or so you will be calling the doc asking if you should run this or that test as if you are a GI yourself! Plus once the kids get healed and are off living their lives it gets a lot easier. First year is the hardest. takes time to figure out what will work for your kid. We are still trying to figure out my younger one 14 months post dx.

 

[Maya142]

Hi and welcome but sorry you have to be here!

Like others have said, some kids are able to induce remission with Exclusive Enteral Nutrition. Typically that is 100% formula but some IBD centers will allow kids to eat a little (like your son) and then they are on 80-90% formula. The other option is steroids, which have lots of side effects, but typically work very well. My daughter required Entocort to get the disease under control, but lots of kids need Prednisone.

In terms of medications, our GI also says Pentasa is not very effective for Crohn's, since it only works on the top layer of the gut. Usually kids are put on immunomodulators like 6MP or Methotrexate or biologics like Remicade or Humura (or a combination of both!). My daughter was put on Remicade and Methotrexate when she was diagnosed and 8 months later, her scopes were MUCH better.

Many pediatric GIs are now using biologics early in the course of the disease to get it under control quickly and hopefully prevent the need for surgery. IBD in kids tends to be more aggressive, so most pediatric GIs treat it aggressively.

It does sound like his current medications/diet are not working well at all for him. I'm glad you have an appointment soon.

Once you get the disease under control, most kids are able to go back to living quite normal lives! Yes, they have to take meds and some get shots or have infusions every so often, but they are still regular kids who go to school, do extracurriculars, play and fight with their siblings, do their homework etc.

The first year is the hardest. The best advice I got was that it's a marathon, not a sprint. It takes time to find the right medication combination for your child.

My daughter also sees a psychologist who is used to working with kids with chronic illnesses. She is a huge help.

Hang in there. It takes time. And it will get better!

 

[Ms Scarlett]

I have crohns. My daughter was diagnosed at 8. She is now 15 doing well. Humira has helped her. She started remicade at 10 wenr to humira at 11. It is very hard being a parent of a child with crohns especially when you know how they feel. My thoughts are with you and your son.

 

[my little penguin]

Check with your hr dept
Most if you worked more than a year will qualify for FMLA
This comes in handy for tests and scopes and kiddo feels horrid etc....
A good bit of paperwork but not too bad
Really helps if you work full time