New to Crohns question

[SarahL]

Hello, my 10 year old was just diagnosed with Crohns in the lowest part of his system Monday, after scoping, and we are waiting on insurance to approve Remicade. He's on a steroid right now in the meantime. It's taken a while to get this diagnosis, but he's had the diarrhea, an an anal abscess that has turned into a small fistula, as well as a lot of weight loss and lack of anergy.

I have a question I can't seem to find answer to, and was hoping some of you experienced parents would know?

Before we had the diagnosis, I noticed though he was small, he always had a tummy. Almost overnight, that tummy that had been gone for 3-4 months (because he wasn't eating much) has returned. His diet isn't the best, we are trying, but he also has a lot of food allergies and food suspicion, so we are working on baby steps here. Does the stomach bloat depend on the food that's eaten or the inflammation level or both? This steroid has him eating for the first time in months, today is day 5 of it, so it's possible his stomach is like woah...3 meals a day again?! But, he's also 10, and last summer a little kid told him he looked pregnant, and he was mortified and in tears. I want to be able to explain this to him in a way he understands and can also start to learn why his body does things and what he does or doesn't have control over.

 

[my little penguin]

Glad you found us
Sorry to hear the dx but at least you have answers
Steriods can cause kids to eat a lot which is good
But can also cause moon face and water retention .
Did he have a MRE as well as scopes ?
If not I would chat with the Gi and explain the stomach -could be nothing or a lot of things
Especially since it wasn’t there for 3 months during the dx process .

remicade is a miracle drug imo
Ds started it at 8
He was dx at 7 after many years of Gi stuff
He also has food allergies
He is 19 now and on the right combo of meds
Imaging is pretty standard once a crohns dx is made to determine the extent of everything at dx

just let him know it does get better
Things will improve abd this is just a small part of him

strongly recommend starting him on supplemental nutrition (kids boost ,pediasure , carnation instant breakfast) 2-3 a day plus 3 solid food meals

easier to get them started before they are pre teens
Crohns eats up a lot of calories so boys tend to need a little extra above what they eat in solid foods to grow during puberty

the shakes help alot and better to get in the habit young
Once he crohns us under control he will gain a lot of weight first then he will grow a lot
But expect the pudgy phase first
Just the bodies way of getting ready for the massive growth spurt at 12-14

hugs

 

[SarahL]

Glad you found us
Sorry to hear the dx but at least you have answers
Steriods can cause kids to eat a lot which is good
But can also cause moon face and water retention .
Did he have a MRE as well as scopes ?
If not I would chat with the Gi and explain the stomach -could be nothing or a lot of things
Especially since it wasn’t there for 3 months during the dx process .

remicade is a miracle drug imo
Ds started it at 8
He was dx at 7 after many years of Gi stuff
He also has food allergies
He is 19 now and on the right combo of meds
Imaging is pretty standard once a crohns dx is made to determine the extent of everything at dx

just let him know it does get better
Things will improve abd this is just a small part of him

strongly recommend starting him on supplemental nutrition (kids boost ,pediasure , carnation instant breakfast) 2-3 a day plus 3 solid food meals

easier to get them started before they are pre teens
Crohns eats up a lot of calories so boys tend to need a little extra above what they eat in solid foods to grow during puberty

the shakes help alot and better to get in the habit young
Once he crohns us under control he will gain a lot of weight first then he will grow a lot
But expect the pudgy phase first
Just the bodies way of getting ready for the massive growth spurt at 12-14

hugs

Thank you! We've been doing Carnation, and extra vitamins for sure, but only once a day. Boost made his mouth itchy so out of an abundance of caution, we stopped. I'll bump that up. Let me ask, he has NOT had the imaging yet, only the scopes. The doctor was talking about a MRI, but I see sometimes an ultrasound is also an option. Can you suggest one over another? I didn't see much on that here through searching. I'm not even sure if they will agree, but I know other countries do the ultrasound. Finances are a huge concern for us, and the MRI (I know from my husbands annual brain scans) aren't covered much by our insurance.

 

[Pangolin]

I have noticed a positive correlation between inflammation and abdominal bloating, given equal food intake. This is one of many indicators you may begin to notice of how sick or healthy he is. Obviously eating more also takes up more space in there, too.

I think there's a good chance MRI will be covered by insurance. They tend to allow more for kids with serious conditions. Ultrasound is great for monitoring but doesn't give you as much information as MRI.

 

[my little penguin]

Depending on the state your in most have secondary insurance for kids with critical conditions regardless of your income through medical assistance
It covers copays, drugs and things your primary insurance may not fully cover
The social worker from the Gi office can point you in the right direction for your state

second the MRE (mri with entography) better at least for the initial scan
My kiddo had a few but us allergic to the meds given so now the best we can do is ultrasound without contrast which doesn’t see much

Definitely talk to the allergist about the kids boost itchy mouth since the only top eight allergen in it is milk
But doesn’t rule out other stuff
Tree nuts and fish allergies here but also oral allergy ( itchy mouth /throat ) to most raw fruit

 

[my little penguin]

Oh and the GI can prescribe the formula as supplemental nutrition for crohns
The durable medical equipment clause covers it as infusion supplies even if he drinks it orally
There are neocate jr (no allergens except corn I think it’s been a while ) but it’s amino acid based so tastes foul

there is peptamen jr which is peptide chain -Tate better just milk as allergen
And then polymeric which is otc (pediasure boost etc..)

 

[SarahL]

Thank you both!!

Eating is a real struggle. He's just not hungry, and I hope once we get on the right medicine, it will help him. The not wanting to eat concerns me and has been a concern for almost a year.

He has been on cycloheptadiene from his pediatrician, but I really don't think that's doing much. GI said we could stop, said it wasn't needed with the steroid, and so I did, but he's had headaches all week, which I've a feeling (though the pharmacist said no) that it's because there was no taper and it's a withdrawal.

I've got some books, and I've been googling for months, but I just don't see answers to a lot of my questions, such as, do they start eating again once they get treatment.

I appreciate the ideas for supplements, and I will see too, if some of those could possibly covered.

 

[Maya142]

It might be worth looking into whether your state has supplemental insurance for kids with chronic illnesses. Some states do and that can really help.

in terms of testing, an MRE is generally considered standard. There is a specialized ultrasound that is done for the small bowel, but only certain hospitals do it - it’s a newer test. A general abdominal ultrasound won’t tell you much - an MRE will give you much greater detail about his small bowel, in case there is inflammation there. I would definitely do the MRE, if you can.

I would discuss the bloating with his GI. My daughter has bloating with certain foods but she also has a motility disorder (Gastroparesis or delayed gastric emptying). So certain foods that have more fat or fiber can cause bloating.
So can steroids. She's also noticed that when she has gastritis - inflammation in the stomach - she tends to have bloating after eating..

My daughter also needed supplemental enteral nutrition. Her GI wanted her on a semi-elemental formula (which is more broken down than something like Carnation and so easier to absorb), so she tried to drink Peptamen Jr. at first.
Polymeric formulas (made of whole protein) like Ensure and Boost (Carnation too though she never tried that) caused diarrhea, nausea and some bloating for her. Pediasure Peptide is another semi-elemental formula that you can try. Then there are elemental formulas that are broken down into amino acids, which are easiest to absorb, like Neocate and Elecare.

I will say that the semi-elemental and definitely elemental formulas are much less palatable than the polymeric ones like Boost. But some kids need them - my daughter ended up tolerating Neocate the best and did tube feeds overnights. A feeding tube is an option if necessary - my daughter was very malnourished and could not drink enough Neocate to even maintain her weight, much less gain. So a feeding tube it was and it made sure she was getting the nutrients she needed. She inserted it at night, did her feeds overnight, and pulled it out in the morning, so no one at school had to know. She was in her teens when she did this, but at our children's hospital, kids as young as 6 as taught to insert an NG tube daily. Or they can choose to keep it in for as long as they need it.

I’m glad you’re getting him Remicade ASAP. My daughter was also put on it when first diagnosed with Crohn’s. Within 8 months, she was in medicated remission. It’s a great drug and most kids tolerate it well.

This is a great place to come for questions and concerns - I'm glad you found us.
Good luck!!

 

[SarahL]

It might be worth looking into whether your state has supplemental insurance for kids with chronic illnesses. Some states do and that can really help.

in terms of testing, an MRE is generally considered standard. There is a specialized ultrasound that is done for the small bowel, but only certain hospitals do it - it’s a newer test. A general abdominal ultrasound won’t tell you much - an MRE will give you much greater detail about his small bowel, in case there is inflammation there. I would definitely do the MRE, if you can.

I would discuss the bloating with his GI. My daughter has bloating with certain foods but she also has a motility disorder (Gastroparesis or delayed gastric emptying). So certain foods that have more fat or fiber can cause bloating.
So can steroids. She's also noticed that when she has gastritis - inflammation in the stomach - she tends to have bloating after eating..

My daughter also needed supplemental enteral nutrition. Her GI wanted her on a semi-elemental formula (which is more broken down than something like Carnation and so easier to absorb), so she tried to drink Peptamen Jr. at first.
Polymeric formulas (made of whole protein) like Ensure and Boost (Carnation too though she never tried that) caused diarrhea, nausea and some bloating for her. Pediasure Peptide is another semi-elemental formula that you can try. Then there are elemental formulas that are broken down into amino acids, which are easiest to absorb, like Neocate and Elecare.

I will say that the semi-elemental and definitely elemental formulas are much less palatable than the polymeric ones like Boost. But some kids need them - my daughter ended up tolerating Neocate the best and did tube feeds overnights. A feeding tube is an option if necessary - my daughter was very malnourished and could not drink enough Neocate to even maintain her weight, much less gain. So a feeding tube it was and it made sure she was getting the nutrients she needed. She inserted it at night, did her feeds overnight, and pulled it out in the morning, so no one at school had to know. She was in her teens when she did this, but at our children's hospital, kids as young as 6 as taught to insert an NG tube daily. Or they can choose to keep it in for as long as they need it.

I’m glad you’re getting him Remicade ASAP. My daughter was also put on it when first diagnosed with Crohn’s. Within 8 months, she was in medicated remission. It’s a great drug and most kids tolerate it well.

This is a great place to come for questions and concerns - I'm glad you found us.
Good luck!!

Thank you! I appreciate the ideas so much.

I'm terrified of the Remicade side effects, and we are over an hour away from the hospital he will have it at, but I'm seeing good stories here about it, and trying to ignore the bad ones, and praying for the best, because I want him to get the help he needs and just hope he won't have terrible or scary side effects. I feel so helpless, and that's the worst. I've felt this way for over a year, as we've tried one place then another to get answers.

 

[my little penguin]

Remicade for the parent is scary
It is
Watching the benefits
In our case a kid who could complete swim meets and practice like a normal child again
Eating like a normal kid again
No more dark circles
No more naps
A full school day
Priceless imo
He did have to change meds (allergic reaction even with iv steriods ) after 8 months
Went to humira no issues for over 5 years
And now Stelara for over 5 years
So it is possible to get the good out of theses meds
And for them to eat

and get into trouble again for minor things
Aka act like a child instead of being too tired to cause mischief