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Hi. My son did EEN with steriods until he hit remission, and then moved to SCD and about 20% EN. We are 3 years into it. I'm happy to help! We have been guided by a group at Scottish Rite in Atlanta (very into SCD) and at Boston Children's.

Try coconut. It isn't bad. Sorry but the soy yoghurt is loaded with things not allowed.

We are all hoping it will work too! I feel like it will. You do such a good job shepherding her (and her sister) through this ugly maze. It is time for her to catch a break.

kimmidwife, I am really sorry to hear this about dd#2. Keep us posted.

They use the term clear at Boston Children's and that certainly describes how clean out impacts my son!

The metric isn't bowel movements but completely clear output. I don't want you to have to go through this again! Maybe someone else has a tip?

We want her better too. I'm sorry. I hope the Flagyl works quickly. Sending support to you both.

Some GIs at the big 3 children's hospitals are involved and pretty hopeful.

Hi. My son is on partial EN and SCD, 3 years in. He went into remission with the big bad boy of meds, steroid, and months of EEN before we finally settled on this approach. It is not easy, but it is working for now. You've probably seen some studies that show success in some patients with SCD...

I'm glad to hear this. This and C and you have been on my mind a lot these past few days. I hope you feel a little better to have this ugly step behind you and she recovers quickly. I'm sorry. I'm not sure why some people hit a string of really bad luck that goes on for too long. I'm hoping...

He is always about 20-30% from formula. Occasionally I see him hit maybe 40-50% but not often. Years ago he was at 90% for about two months.

Oh no! I hope she found something to help. Let us know.

My son has been on strict scd for over 3 years. We make no variations and he just had his quarterly labs and FCP, all good. Annual scope coming up in June. I'm happy to talk!

The replies here confirm what I've thought. Working as a mom is a personal decision that is very dependent on individual circumstances. And what is right at one time may not be the best option later. I work full-time but am lucky to have some flexibility sometimes when and where I work. I take...

Pilgrim, My son has been on SCD for over 3 years and it is working well for him so far. I don't post a lot about it because I get replies and messages that diets don't work. I'm happy to answer any questions. I can't give SCD full credit because he went through a long course of steroids and...

Farmwife, I'm sorry to hear about this news. A new diagnosis is scary even if our rational mind knows it can mean new minds can review her and new treatments become options. She sounds like such a happy and resilient little girl. I'm glad she enjoyed her birthday and those authentic Mexican...

Hi. I have a child on scd and I understand. There are times when I am tempted to adjust it for a number of reasons. However, although there are a handful of small scale studies that show good results in patients who can stick to it religiously, there are no studies that show success when people...

Sorry PDX. We went through the same thing. My son already felt like he stood out drinking his "shakes" all the times and didn't want another reminder that he was "different". It is hard to convince kids that the other kids are so worried about themselves at that age that they may not notice what...

I heard new Humira without the burning citric acid could be available in US as early as late Jan. Wonder if it takes a new script or they try to use up old formula first? Would love for little Pilgrim to catch a break in some way!

Hi. I am sorry to hear about your son. I guess having the diagnosis is actually first step in helping him grow and attacking that silent inflammation. My son has been treated with SCD and partial EN for two years. He now has clean biopsies and no symptoms other than being skinny for his height...