New to forum parent of 3 year old with IDB

[Dashdad]

Hello, I have been looking at the forum for the last few months and decided it was time to share my son's story and trials dealing with IBD. My son was diagnosed last April with UC or Crohns at the age of two. The past year has been a real challenge getting him to remission. We are still not there and he is currently flaring after his 4 infusion of Remicade. In addition to the Remicade, he is taking a slew of other meds including, Methotrexate, Sulfisalizine, FE, Budesonide, Xantac, Periactin, Probiotic, and Folate. We have pushed up the next infusion by a week, hoping it will help. After the second infusion at the fourth week he flared again, and that has happened after the next two. We are on the fifth.

My family is up in arms and worried beyond worried. Of course he refuses to eat and complains of pain, has a fever, and is so pale and tired.

Any response would be great, really looking for similar stories and hope that we will find a situation of comfort and health.

He is a super boy and so tough. Actually looks forward to bloodwork for the stickers and has such a great attitude (not when flaring, but you know)

Thank you Forum!

 

[Maya142]

Hi and welcome (but sorry you have to be here)!

A couple things --

What dose of Remicade is he on? Sometimes kids need a higher dose as well as frequent infusions. As he gets better, you can spread infusions out. We needed to go from the standard 5 mg/kg to 7.5 mg/kg to 10 mg/kg before my daughter's Crohn's was under control.

Have you considered EEN or steroids to get the flare under control? EEN would not be too bad with a kiddo that age. I'll tag some parents whose kids have done it:

my little penguin
crohnsinct
Pilgrim
Farmwife
Clash
pdx

Really hope you can get him feeling better soon.

 

[Dashdad]

Thank you Maya! My son's last infusion was the 10mg/km. It worked for a few weeks then back to bad. I am currently looking at EEN, sorta unsure about it. Seems like more pain. Glad to be here rather than in the wind and worry alone.

 

[ronroush7]

Sorry for your son is going through. Sending support

 

[my little penguin]

Strongly recommend EEN as an adjunct therapy .
It doesn't need to be peptamen or peptide ( both semi elemental )
It can be bright beginnings ( soy drink ) ,pediasure or kids boost .
There are elemental formulas ( neocate Jr ( my kiddo drinks this one ), elecare Jr. and eo28 splash- these are juice box style drinks )

The formula helps reduce inflammation but at the same time gets nutrition that is easier for the digestive track to absorb and requires less work so the body can rest on that front .

Crohns kids have trouble keeping on weight and growing
Formula evens the playing field so they can grow like their peers.
Ds is 12 and was dx at age 7.
Due to formula he above average height for age.
Some of his friends who have crohns ( and are 6-8 months older ) use the similar meds ( remicade/Mtx) are 20 lbs lighter and 6-8 inches shorter - their healthy siblings are very tall so definitely the lack of wanting to eat .

Yes the first week or two is a pain
But the the kids are used to it and life goes on.

We supplemented ds with formula plus food for 4 years and he has done full EEN three times now .

 

[Dashdad]

Thank you lil penguin. My son is allergic to soy eggs and nuts. Has D had to do the feeding tube? My GI mentioned it but warned it can be tough to get them to drink it. I'm up for it though since my son is small and short. At least he's funny!!

 

[my little penguin]

Ds drinks his all orally
He did cry at age 7 and had use pinch his nose so he wouldn't taste the peptamen Jr
Did the same thing in May when the Gi switched him to elemental ( neocate Jr ).
Found the flavor he likes ( chocolate ) and things went much better .
Ds is allergic to tree nuts sesame and fish so I understand .

Kids boost by nestle
https://www.nestlehealthscience.us/brands/boost-kid-essentials/boost-kid-essentials-1-0


Lists soy in the ingredients but only soy oil and lecithin .
I know when ds was allergic to soy - lecthin and oil were not an issue but I know that it depends on the kiddo and allergist .

Eo28 splash some kids like better due to juice box alone.
Neocate Jr choc and Elecare Jr vanilla are the sweetest elementals

Peptamen Jr I believe doesn't have soy ( but check with you allergist and read the label )

Did the do genetic testing?
Very early onset Ibd is in a class all by itself
Extremely hard to treat
Most are from an immunodefeciency

Emory university does testing on it

Your Gi should be able to get you samples to try of formula
Ours we shocked ds would drink it orally
And still drinking it 5 years later

If your Gi won't give you a sample
Nutrica ( neocate and eo28 splash samples )
Abbott nutrition - elecare samples
Nestle nutrition ( peptamen Jr samples and kids boost )
Kids boost you can get at the grocery store
Everything else is online

Your GI can write a script which means the formula can be covered by insurance under the durable medical equipment clause as infusion therapy supplies ( even though it can be consumed orally )

 

[my little penguin]

http://m.abbottnutrition.com/brands/products/elecare-jr

https://www.neocate.com/shop/c-9-neocate-junior.aspx

https://www.neocate.com/shop/p-24-e028-splash.aspx

http://www.nestlenutritionstore.com/products/Pediatric-Nutrition/PEPTAMEN-JUNIOR.html#.V2XOPMj3anM

Peptamen Jr has soy oil /lecthin

The others are amino acid based so no intact proteins so safe for kids with food allergies

 

[Dashdad]

Thank you so much MYP. Will start this next week. My son has an infusion on Friday. Hopefully we can get this rolling on Monday. Poor little dude is not eating and movements galore. I'm so pleased with my first day on the forum. We are not alone. I'll be sure to update. I'm glad your little one is thriving!!

 

[Maya142]

My daughter has a feeding tube. If you have to go that route, it's not so bad. She started out drinking 2 shakes a day (Peptamen Jr) but couldn't drink enough to gain weight. We started out with an NG tube which she inserted every night and pulled out in the morning, so no one at school had to know! We did her feeds overnight.

With a little kid, he'd probably just keep the NG tube in all the time.

I was shocked at how good she got at inserting the tube. The first night was rough -- her throat and nose bothered her and she was very uncomfortable, but the second night was better, and after that, it was easy.

It sounds very intimidating, but having the tube was surprisingly easy. It's a good option if your child refuses to drink.

She still gets supplemental EN through her feeding tube, to keep her weight up. Now she has a more permanent tube placed in the stomach, that was placed surgically.

Good luck!

 

[pdx]

So sorry to hear about all that's going on with your son. My daughter took a long time to respond to Remicade, but she's doing well on it now. I agree with all the suggestions about EEN above. My daughter was very malnourished when she was diagnosed, and EEN really helped jumpstart her recovery--it gave her body the nutrition it needed to start healing. She could not drink formula and so used an NG-tube for several months. She kept it in all the time and really didn't notice it much after the first few days of discomfort. Once we figured out a formula that worked for her, tube feeding took away most of her symptoms and gave her back her energy.

I hope that your son starts feeling better soon!

 

[CarolinAlaska]

EEN is a great option and works well after you find the right formula.

Has your son been tested lately for c-difficile in his stool? Multiple visits to hospital can expose him especially as a little child. Then the infection looks like IBD isn't going into remission, but can get better after antibiotics. Sometimes the docs overlook the common stuff...

 

[RexMom]

So sorry to hear about your son. My son is 4 and we have yet to figure out what works for him. He is currently on Entyvio.

Sulfasalazine was terrible for my son. Methotrexate worked but he had a bad reaction. With all the drugs your son is on, how does the Dr know one of them is not making him worse?

 

[Gmama]

So sorry your son is going through all of this. My son was older than yours at dx and it took lots of time and LOTS of trying different meds before things started to come together for him. As a parent we all sympathize with you and the frustration of seeing your son struggling. This is such a crazy disease and it's different for everyone. Keep coming here with questions, and remember you are the biggest advocate for your son...we have all been there. The parents here are awesome and the biggest support system I had through my son's awful situation. Keep us posted:ysmile:

 

[Farmwife]

Hi and sorry for the late welcome.:heart:
My girl was dx at three. She's seven now but still has issues and not in remission yet.
You've been given great advice and
if there's anything I can help with please ask away.

As to the feeding tube possibility....
it's been the best thing for my Grace.
She had an AMT button surgically placed by her belly button.
I can't tell you how many times it's kept her out of the hospital.
At her last doctor visit I was told Grace was now in the 50th percentile for weight.
So in 2 years she went from 9% to 50% in weight.
Not to bad, hey.:dance:

 

[polly13]

Hi there, so sorry to hear your little boy is suffereing. My little girl Lucy was diagnosed at 2 with Crohn's, she too started remicade at 3, however it didnt work after the first few infusions, so that was stopped and she was put on Humira and Methotrexate which put her into remission for 3.5 years (out of remission now but thats another story and another post!) There are options for the docs in relation to the drugs, hey can play with the dosage and frequency, they can add EEN as already suggested, or maybe 6 mp or methotrexate or change to Humira. Looking back on our time when we were going through what you are going through now, I think there is an element of trial and error and what works for one child wont necessarily work for another. I understand what you are going through and will be thinking of you as it is a very difficult time.