Re: My 14 year old daughter has Cronhs since 10 years old.

[Guest guest]

Dear Fellow Group Members,

My daughter Saiya was diagnosed with Cronh's since the age of 10. Having tried

this , that and the other, we are at the cross roads where the doctors have now

informed us that she needs to go on the Humira treatment.

We are not so keen, and having spoken to a friend (thank you ), found the

SCD diet and bought the book " Breaking the Vicious Cycle " . It is both

encouraging and scary, scary because it feels impossible, yet having read so

many testimonials, it is very encouraging.

I would like members who have placed their children with Crohn's or other IBD

issues in UK on the SCD to contact me. I really would like to know if a

boot-camp type SCD group camps exists for SCD, or groups that meet locally or

nationally in United Kingdom.

There are so many questions, like how do you start a child that is already very

weak, low in weight and suffering from severe diarrhea start off on SCD

programme?

Thank you, and best wishes to all those on the SCD plan.

Regards

Meena x

[Guest guest]

Meena,I lived in the UK for several years when starting SCD for my husband. The kids and I did the diet with him. My husband is not a firm believer in the diet and he therefore considers my insistence on avoiding sugar and starch 'draconian.' Nonetheless, I have a bit of experience with SCD and kids. There isn't a bootcamp for SCD kids, but what a great idea! The most important thing I can suggest is you tell the school and friends that your daughter has an allergy to wheat and that sugar makes it worse. As there is no allergy testing, in general, in the UK, you can tell them that you did it through the process of elimination and had no other choice but to conclude wheat and sugar were the cause. You can then say that although she doesn't need an epi pen for

her allergy (as it isn't an immediately life threatening response), consuming wheat and sugar can bring on incredible pain and disability (even hours later), so that she will feel as if she were dying -- which isn't a lie. Tell the teachers that you do not want her consuming any outside food. Have them let you know when a child is celebrating a birthday so that you can provide a treat for her so she is not left out (there are some fantastic tasting and looking SCD treats -- even ones made with coconut flour if nuts are banned at school). The point is, you have the right to the expectation that your daughter receive the same consideration for her food issues as someone who is nut sensitive. Of course the school is not going to ban wheat and sugar (although they should!), they should at least respect you and your daughter to the same degree. Even though your daughter is weak, you still need to start the

diet. The chicken/bone broth is very nourishing. She will have die off and it will make her symptoms worse at first, but you can also give her epsom salt baths (order the salts from the chemist) which will help her body heal and detox (if you don't have a bath, a foot bath will work too) -- 2 cups in a bath of very warm water up to her navel soaking for at least 10-15 minutes using a wash cloth or cup to pour it over her so that as much of her skin is covered as possible. Don't rinse off, and do it at bed time and she will relax and sleep well. Also make sure you stress that she chew her food until it is smooth in her mouth -- her intestines do not have teeth! If you think she isn't doing that, puree her food at the beginning to make savory smoothies with the broth. It will take time, there will be ups and downs, you will have to discover which foods she does well with (not all SCD legal foods sit well with everyone),

but you will see progress -- whether it is better colour in her skin, less pain, fewer trips to the bathroom, less cramping, etc. So keep track of these things as it will help you know what is helping and what is hurting her as she progresses. Keep reading and asking questions, we are here to help. BTW, did you know that there is a SCDUK yahoo group too?Good Luck in your journey!AmeliaTo: BTVC-SCD Sent: Thu,

October 14, 2010 4:44:45 AMSubject: RE: My 14 year old daughter has Cronhs since 10 years old.

Dear Fellow Group Members,

My daughter Saiya was diagnosed with Cronh's since the age of 10. Having tried this , that and the other, we are at the cross roads where the doctors have now informed us that she needs to go on the Humira treatment.

We are not so keen, and having spoken to a friend (thank you ), found the SCD diet and bought the book "Breaking the Vicious Cycle". It is both encouraging and scary, scary because it feels impossible, yet having read so many testimonials, it is very encouraging.

I would like members who have placed their children with Crohn's or other IBD issues in UK on the SCD to contact me. I really would like to know if a boot-camp type SCD group camps exists for SCD, or groups that meet locally or nationally in United Kingdom.

There are so many questions, like how do you start a child that is already very weak, low in weight and suffering from severe diarrhea start off on SCD programme?

Thank you, and best wishes to all those on the SCD plan.

Regards

Meena x

[Guest guest]

I'm not in the UK but I have a son almost 14 years old, diagnosed with Crohn's

at 11 years old. I completely understand your hesitation to use Humira because

I also wouldn't use drugs that I felt had such a high risk of terrible side

effects. I started my son on SCD a few months after he was diagnosed when I

realized the doctor's medicine wasn't going to help him. It was very difficult

for me (and him) to make such a drastic change in his diet. I backed into the

diet - I took away 1 forbidden thing at a time. Milk first, candy second, bread

third and so on. He had small improvements almost immediately. Then after a

couple months, I did the intro diet 100% for a 4-day weekend and he got better

still. I used the SCD multivitamins recommended in the book and he tolerates

them perfectly. When I found food that he could digest he became ravenous - I

couldn't make enough chicken soup, yogurt, scrambled eggs, etc. He still can't

tolerate almond flour, coconut flour or peanut butter. I used ground English

walnuts in place of almond flour in a recipe called Yonana Muffins and he could

eat those without trouble. I think you really have to experiment to find what

will work for you. Every recipe I try I only make a small fraction of the first

time because I hate wasting expensive ingredients on something that doesn't

work. It has been worth it though because his new doctor couldn't believe how

healthy he was and how on track his growth is. He is going through puberty

normally, his height is 50th percentile and weight 15th percentile. The doctor

said we were obviously doing something right and to just keep it up. I think

your SCD bootcamp idea is wonderful, especially for teens. It's hard for a

teenager to eat different from their friends and my son is never 100% compliant.

Best of luck to you and your daughter.

>

> Meena,

>

> I lived in the UK for several years when starting SCD for my husband. The

kids

> and I did the diet with him. My husband is not a firm believer in the diet

and

> he therefore considers my insistence on avoiding sugar and starch 'draconian.'

> Nonetheless, I have a bit of experience with SCD and kids. There isn't a

> bootcamp for SCD kids, but what a great idea! The most important thing I can

> suggest is you tell the school and friends that your daughter has an allergy

to

> wheat and that sugar makes it worse. As there is no allergy testing, in

> general, in the UK, you can tell them that you did it through the process of

> elimination and had no other choice but to conclude wheat and sugar were the

> cause. You can then say that although she doesn't need an epi pen for her

> allergy (as it isn't an immediately life threatening response), consuming

wheat

> and sugar can bring on incredible pain and disability (even hours later), so

> that she will feel as if she were dying -- which isn't a lie. Tell the

> teachers that you do not want her consuming any outside food. Have them let

you

> know when a child is celebrating a birthday so that you can provide a treat

for

> her so she is not left out (there are some fantastic tasting and looking SCD

> treats -- even ones made with coconut flour if nuts are banned at school).

The

> point is, you have the right to the expectation that your daughter receive the

> same consideration for her food issues as someone who is nut sensitive. Of

> course the school is not going to ban wheat and sugar (although they should!),

> they should at least respect you and your daughter to the same degree.

>

>

> Even though your daughter is weak, you still need to start the diet. The

> chicken/bone broth is very nourishing. She will have die off and it will make

> her symptoms worse at first, but you can also give her epsom salt baths (order

> the salts from the chemist) which will help her body heal and detox (if you

> don't have a bath, a foot bath will work too) -- 2 cups in a bath of very warm

> water up to her navel soaking for at least 10-15 minutes using a wash cloth or

> cup to pour it over her so that as much of her skin is covered as possible.

> Don't rinse off, and do it at bed time and she will relax and sleep well.

Also

> make sure you stress that she chew her food until it is smooth in her mouth --

> her intestines do not have teeth! If you think she isn't doing that, puree

her

> food at the beginning to make savory smoothies with the broth. It will take

> time, there will be ups and downs, you will have to discover which foods she

> does well with (not all SCD legal foods sit well with everyone), but you will

> see progress -- whether it is better colour in her skin, less pain, fewer

trips

> to the bathroom, less cramping, etc. So keep track of these things as it will

> help you know what is helping and what is hurting her as she progresses.

>

>

> Keep reading and asking questions, we are here to help. BTW, did you know

that

> there is a SCDUK yahoo group too?

>

> Good Luck in your journey!

>

> Amelia

>

>

>

>

>

> ________________________________

>

> To: BTVC-SCD

> Sent: Thu, October 14, 2010 4:44:45 AM

> Subject: RE: My 14 year old daughter has Cronhs since 10 years old.

>

>

> Dear Fellow Group Members,

>

> My daughter Saiya was diagnosed with Cronh's since the age of 10. Having tried

> this , that and the other, we are at the cross roads where the doctors have

now

> informed us that she needs to go on the Humira treatment.

>

> We are not so keen, and having spoken to a friend (thank you ), found the

> SCD diet and bought the book " Breaking the Vicious Cycle " . It is both

> encouraging and scary, scary because it feels impossible, yet having read so

> many testimonials, it is very encouraging.

>

> I would like members who have placed their children with Crohn's or other IBD

> issues in UK on the SCD to contact me. I really would like to know if a

> boot-camp type SCD group camps exists for SCD, or groups that meet locally or

> nationally in United Kingdom.

>

> There are so many questions, like how do you start a child that is already

very

> weak, low in weight and suffering from severe diarrhea start off on SCD

> programme?

>

>

> Thank you, and best wishes to all those on the SCD plan.

>

> Regards

>

> Meena x

>