RE: Does DCCC have casein?

[Guest guest]

I'm a newbie, so I'm just throwing out possibilities, but could die off

increase seizures as the kiddos detox? Detox causes severe horrendous

headaches in nuerotypical people, so could it initially cause increased

seizures in kids with a seizure disorder? I don't know just asking for

my DS's future benefit too.

Colby

SCD 3 weeks 2 days

[Guest guest]

I'm a newbie, so I'm just throwing out possibilities, but could die off

increase seizures as the kiddos detox? Detox causes severe horrendous

headaches in nuerotypical people, so could it initially cause increased

seizures in kids with a seizure disorder? I don't know just asking for

my DS's future benefit too.

Colby

SCD 3 weeks 2 days

[Guest guest]

Hey Sharon,

Just some brain stroming... will he drink coconut milk or another kind of nut

milk? I think pecan milk is supposed to be easier to digest.

Almonds are high in salicylates, and cause some kids behavioral and

neurological symptoms.

Maybe if you went back to what you were feeding him at the beginning then

added the

dccc and almond milk one at a time, you'd get a clearer picture.

Obviously, something is working, but the fine tuning is tedious.

Agape,

SHARON CRUIKSHANK wrote:

I am thinking non-stop about what might be agrravating 's seizures

(aside from the obvious brain damage). He was doing really well at the

beginning of the diet. I have added almond milk (a virtual necessity as

he won't drink anything else) and making custard from the dccc (so eggs

and dccc). I thought dccc would be OK since it wouldn't have lactose,

but maybe it's the casein? We already tried one med increase which

helped with the abscence but the myoclonic clusters are increasing in

number and intensity. While the neuro is ok with another increase I

don't want to do it because I don't think it would help. I'm going crazy

here. Aside from the seizures is gaining weight, his energy

continues to improve, his poops are lovely. I'm stopping the custard

tomorrow. I imagine it will take a few days to get out of his system.

The question is how long do I wait? Could it be the problem?? Any help

would be appreciated. Thanks.

Sharon, mom to 6 weeks SCD

p.s. the amino acid thing turned out to be nothing

Sharon Cruikshank

[Guest guest]

Hey Sharon,

Just some brain stroming... will he drink coconut milk or another kind of nut

milk? I think pecan milk is supposed to be easier to digest.

Almonds are high in salicylates, and cause some kids behavioral and

neurological symptoms.

Maybe if you went back to what you were feeding him at the beginning then

added the

dccc and almond milk one at a time, you'd get a clearer picture.

Obviously, something is working, but the fine tuning is tedious.

Agape,

SHARON CRUIKSHANK wrote:

I am thinking non-stop about what might be agrravating 's seizures

(aside from the obvious brain damage). He was doing really well at the

beginning of the diet. I have added almond milk (a virtual necessity as

he won't drink anything else) and making custard from the dccc (so eggs

and dccc). I thought dccc would be OK since it wouldn't have lactose,

but maybe it's the casein? We already tried one med increase which

helped with the abscence but the myoclonic clusters are increasing in

number and intensity. While the neuro is ok with another increase I

don't want to do it because I don't think it would help. I'm going crazy

here. Aside from the seizures is gaining weight, his energy

continues to improve, his poops are lovely. I'm stopping the custard

tomorrow. I imagine it will take a few days to get out of his system.

The question is how long do I wait? Could it be the problem?? Any help

would be appreciated. Thanks.

Sharon, mom to 6 weeks SCD

p.s. the amino acid thing turned out to be nothing

Sharon Cruikshank

[Guest guest]

Sharon,

One of my foster kids, Cindy, used to have many seizures, and the

only drug that worked was one that made her suicidal. She stayed

with us for 3 years, and made many improvements. After the

antibiotics for an ear infection caused her to go into liver failure,

she had to come off all her seizure meds cold turkey. Her liver came

back, but she never regained the gains she lost. She is now in a

residential school, making limited progress, but it's a good school,

and she is loved.

I learned about this diet because after she got to the school they

consulted with Hopewell Associates in Massachusetts. She was still

having many seizures - we had tried many drugs over the course of

those 3 years. They assessed her vitamin needs and discoved her food

allergies - soy, dairy and eggs. Within a few months her seizures

decreased dramatically, and they staff is able to trace her current

seizures - benadryl and fevers cause them.

Have you consulted with anyone about doing bloodwork, urine workup,

stool analysis, etc? They are not perfect, but are a good starting

place.

I also came across a website that was about die-off for adults, and

this probably applies to children also, that if you've ever had any

disease, then as the nasties die off, the disease will rear it's ugly

head again, but then go away. I came down with pneumonia 2 months

into the diet, and during die off I have trouble with bursitis in my

hips. It may be a die-off reaction, or a reaction to the dccc.

Hang in there - I'm rooting for you!

Sue B SCD 10 months

[Guest guest]

Thanks , while I hate to go back to the tube for drinking, I guess

grape juice will have to be done. I don't want to add coconut milk at

this point as it would be a change too. Intro diet it is, although he's

gotten really bored of chicken+carrots. Of course, I just bought 12

pounds of almond flour too. Agh. I need to get calcium in him too -

which is why I liked the DCCC, plus he loved it. Agape, Sharon

Almonds are high in salicylates, and cause some kids behavioral and

neurological symptoms.

Maybe if you went back to what you were feeding him at the beginning

then added the

dccc and almond milk one at a time, you'd get a clearer picture.

Obviously, something is working, but the fine tuning is tedious.

Agape,

[Guest guest]

Thanks Colby, he never did experience die-off, or anything so obvious as

to be die-off. He lost a little weight at the beginning, then started to

gain. He's been full of energy, happy as clam (has always been happy).

He definately hasn't had any headaches. Back to the Intro we go.

I was thinking that because he is gaining weight that proved the diet

was working, at least from an absorption standpoint, does die-off have

to happen?

Sharon, mom to SCD 6 weeks.

I'm a newbie, so I'm just throwing out possibilities, but could die off

increase seizures as the kiddos detox? Detox causes severe horrendous

headaches in nuerotypical people, so could it initially cause increased

seizures in kids with a seizure disorder? I don't know just asking for

my DS's future benefit too.

Colby

SCD 3 weeks 2 days

[Guest guest]

His MDs did blood workup, urine analysis, stool analysis but I don't

think they were looking for the same things an sc-diet friendly doctor

would look for. I have someone else looking at these right now, and

spoke to a naturopath yesterday who at least knew what the diet was and

agreed that nutrition is key. We'll be seeing her soon. I was thinking

along the lines you were too - maybe the clearing out phase of all the

nasties intensifies everything going on in him, energy and sheer

happiness being good, seizures bad. The seizures themselves within the

clusters are stronger and farther apart, almost like they are getting

more effecient at clearing out the noise. Good thing? Bad thing? I don't

know. Anyway, we'll give DCCC and almond milk the boot for now and see

what happens. Poor kid is going to grow feathers and have rabbits

sniffing at him.

Sharon, mom to , 3yo, HIE, CP, CVI, epilepsy - 6 weeks SCD

[Guest guest]

You got me about die off. Ours seemed to be mild compared to what

others have gone through, but I did have a headache for 2 weeks and my

daughter had " cold " symptoms and seems to be dealing with the yeasty

beasties. But it is soooo good to hear that your DS is full of energy

and gaining weight! That's exciting!

Colby, celiac

SCD 3.5 weeks