New with Crohn's child and 2 otherd

[pathfnd1]

I am new here. Please help me with my question about SCD for children. My grandson is 10 with Crohn's. His brother is 8 and has autism, but no Crohn's. Their sister is 5. My question is what do you let the other children who don't need the SCD diet eat? Do you have all the kids eat on the SCD? If not, how can the child with Crohn's handle his or her siblings eating "regular" food?

 

[Maya142]

This is a good question. I'm going to tag some parents who have done diets. Not all have done the SCD, but all have had one kiddo do some sort of restrictive diet (formula only - called Exclusive Enteral Nutrition, IBD AID, SCD, gluten free etc).

crohnsinct
Pilgrim
Tesscorm
Farmwife
Optimistic
my little penguin
Mehita

I'll also add my own daughter's experience. She has many dietary restrictions due to Crohn's and Gastroparesis. For a while she was tube fed and got 85% of her calories from formula and ate very little food. She later went to being about 50% tube fed and 50% food.
Due to Gastroparesis, she cannot eat high fat or greasy things - so a lot of junk food is out.
Due to lactose intolerance, she can't eat things like ice cream, butter etc. She will eat some food with lactose, but does her best to stay away from them.
We also did gluten free for a month, but it made no difference.

Her older sister has no GI conditions. She has never done any restrictive diets. She eats regular food and I cook special food for the younger one. My girls were much older when M was diagnosed with IBD - she was 16 - so it was much less of a problem than with little kids.

M understood why she needed to try the special diet and if she cheated, she usually was nauseous and miserable (except for gluten which didn't bother her) and it was not worth it.
She likes to try and modify recipes to see if she can eat them.

 

[pathfnd1]

Thank you.

 

[Farmwife]

Welcome
Are you the primary caregiver?
It sounds like you have your hands full.
I've heard it happen both ways.
My daughter was tube fed for a long time.
My son (non ibder) had food limitations himself due to allergies when he was younger.
So not much help here

 

[Carolina*]

My daughter was diagnosed with Celiac and IBD recently. I know the gluten-free diet is not the same as SCD, but I think the simpler the better in terms of making 1 meal. The SCD diet is a healthy one so if you can get the whole family on board then it would be good all around I would think. The 5yo may resist the most but also probably the easiest to change in some ways versus years of eating foods you love that you now can't. When we went GF I tried to make GF versions of her favorites like tacos, pizza, pasta, buritto bowels etc. so she would accept it and not feel cheated. That being said, whenever she is out of the house for a sleepover we gluttonously gorge on gluten.

I take back everything I said, I didn't realize it wasn't a great option for non-IBD kids in terms of weight gain, etc. Good luck, it's a lot to navigate!

 

[my little penguin]

We have done every diet out there (no scd)
Plus various food allergies /lactose intolerance etc...

Mine are teenagers now
But when they were little
All sweets (cookie /candy etc ..) were bought /bakes safely so anyone could eat them
And no issues if “sharing “ happened

Breakfast /Lunches during the week were per that kiddos issues

Dinner 1 meal with options
So tacos
One kid may get a coconut based to tortilla and plant based cheese
Safe meat /rice for all
Veggies
So one meal woth variations

Mine are older
You do NOT want to make all the kids eat scd
Scd is hard for kids to gain and maintain weight
But some still try it as a treatment

Jealously will show up big time
Since the other children will assume the ibd kiddo gets special time due to spots etc...
And if they are made to eat the same diet woth a ton of restrictions (which scd has )
They will resent the ibd kiddo big time
And cause you a ton of grief

Since a normal diet won’t phtsically “kill” the ibd kiddo if they accidentally eat the wrong thing
(We have life threatening food allergies in our house where that can happen)
There is no need to force the other kiddos to eat scd

If scd is for life
The ibd kiddo will need to learn how to be around other folks eating a normal diet

That said to make mine FA kiddo not feel alone
I would eat the same main dinner meal when he was very young (age 2 on )
And slowly moved away from that around age 11-12

They need to be trained to deal with it prior to being ateenager
When parents are not constantly watching
So they don’t “cheat” on the diet

Make sure there are plenty of safe goodies
No one cares too much about dinner
But a safe scd cookie /cupcake etc.....

Anything and everything can be made safely
Either through a different type of “flour “ be that nutbased etc

Or egg substitute etc....

You can make everything

 

[crohnsinct]

I am assuming you know this already but the SCD diet gained popularity because of it's benefits for autistic children. So, I am guessing it is the boys on SCD and their sister allowed a more liberal diet.

May I ask why the IBDer is on SCD? Is this adjunctive to maintenance meds? FWIW - SCD diet has only been shown to be helpful with relieving symptoms but not necessarily curing inflammation at a mucosal level. I know there are some centers studying it so maybe he is at one of them. But for people not in a study, I have only heard of one parent here who has been able to manage her son's IBD with diet and EEN paging optimistic.

Both of my daughters were on Exclusive Enteral Nutrition while the family ate. They weren't to terribly bothered by it but they were oder, it was temporary and they were feeling better on it.

If the SCD is adjunctive to meds I agree with MLP that if he goes off here and there, it probably wouldn't cause a problem but you would have to work with your dietician and GI on that.

Incidentally, my younger daughter did a stint on SCD and she loved the food and still asks for many of the desserts and such that she had on it.

 

[Pilgrim]

We did 6 months strict SCD with our daughter H. Actually, we tried it first when she was early in her diagnosis but she was so sick then that we had to stop and go to meds. She was 3 then. Now she's 7.
So we tried it at age 6 when she was feeling better but still high inflammation numbers. She has 6 siblings and so it really wasn't possible to feed everyone SCD as the expense was high for us. We had special food for her and tried to share the family meal at suppertime by making it SCD with options for everyone else.
I found it helpful to have a variety of scd treats on hand, because kids miss the sweets that their siblings receive. Holidays are hard, and our daughter had to refuse every treat she was offered at school. Birthdays, Valentine's day, Christmas, Easter.....all require special prep.
That said, she did it! Her inflammation levels did go down, but I don't know for sure if it was med related, diet, or both.
This diet is used for Autism too, so could be a help all around.

 

[Tesscorm]

I'm sorry, I'm not much help here. We only had to deal with different diets when my son was doing exclusive enteral nutrition (for six weeks) and my kids were older at that time (16 and 17), so a greater understanding of the reason.

But, FWIW, I agree with trying to keep similar meals with different options/preparations. I did do this when mine were younger but it was due to only to 'pickiness' so no health issues.

Good luck... it's hard to accommodate all needs/tastes but, it does get easier once you have some practice with specific meals and how to adjust them accordingly.