Robbie, Patti and anyone with two cents / was: Two year old needing comfirmed or not?

[Guest guest]

Dear Robbie,

I thank you so much. It sounds like you are the one who may know how to help us

since you are having similar problems and having success? Can you answer five

questions? I would like to hear your experience strength and hope. I am glad

that you have consulted with Lucy. I don't like bothering her, but truly

respect her suggestions. She is recovering from IBD/UC to prove that people

can heal.

1.. Did you use enzymes? If so, which ones and how? If not please tell me, I

don't know if they are causing us complications or not. Or if we should stop

them. At this time this is the only thing that we are doing that is not

suggested in the BTVC book. This was a suggestion from her DAN! doctor.

2.. What supplements do you use?

3.. Did he loose significant weight during his flares and how did you put

weight back on him? Kiki's appetite vanishes. She just fell from a " proud " 24

pounds down to 21! It is getting Hard to get her to eat.

4.. At two years he still can't eat raw fruits? I suspect that this is what

caused this last flare.

5.. Without a confirmation (colonoscopy) and cooperative doctors, how will we

get her steroids when she starts to go into a flare? Any ideas? I truly do not

trust this procedure with her. She is chemical sensitive too. God knows what

her immune system is doing.

I hope that you can give me more wisdom. It is becoming very evident that the

Raw fruits and vegetables are a part of this set back. WE thought at 8 months

out that she would be ok with them. It is obvious that she is not. I have

instructed the other family members that they are to NOT eat advanced foods

around her. She always has a way of looking at them with her sad eyes and

getting some! I have threatened to leave home with her if they do not listen to

me!

Dear Patti, your turn since you seem to be the seizure expert.....

Did your daughter have seizures where she would wake up screaming out of a sound

sleep? The Neurologist thinks that she is having them when she does this. The

DAN! thinks that she is in pain. I have to keep a log of all these strange out

bursts she has. They always occur between 1 and 3 in the morning. EVERY SINGLE

TIME SHE HAS A FLARE. Before SCD these episodes where more like deliriums where

she would not recognize me and she would not comfort and would try to beat me up

like I was a monster or something scary.

Now she recognizes me, thank God...but still doing this. She also does

something very peculiar when stressed out or confronted by strangers...she goes

into a " sleep " . It truly looks like a sleepy little girl falling into a sleep.

Even if she is not truly sleepy. They are going to rule out Narcolepsy too.

Some say that she is " dissociating " when she does this. What a word. If any

one has an ASD child who does this let me know please.

She can not talk that well yet, it is impossible to ask her questions about

these things. They can't even evaluate her that well to see where she is

developmentally. She just shuts out strangers and goes to " sleep " . If I could

evaluate her...this would be the only way that they could see where she was. At

this time she is talking like a 6 month old.

I feel like I live in a torture camp sometimes...I get into a deep sleep and

then she does this. Dad can never fix it.....he just makes it worse. Thanks to

SCD, Kiki just recently lets me comfort her without a battle during these

episodes. So I am very tired.

Lastly, They are even suspicious of Fragile X Syndrome now. This is a cause

for her type of autism. With MRI, they also need to rule out brain changes,

that would cause her to be so different. They are going to get a

anesthesiologist who specializes with those with sensitivities to do this

procedure. It scares me to death.

I feel like screaming what's next? Little girls do not always have the features

that go along with Fragile X syndrome because they have two xx's....when I read

about this syndrome I just cried, because she has many of the traits. Loose

joints, hypotonia, high roof top in mouth, short tongue, preoccupation with

words and letters, tantrums, rages, seizures and the GI problems. Wouldn't this

be the cherry on the darn cake if after all this that this was her problem! But

then I also know that many ASD kids are like this that do not have this

syndrome...so we will have to wait and see.

Pray that I get some sleep...Dad is going to try to distract her so that I can

go back to bed and take a nap.

We truly thank all of you for your support. We truly need it. This has not

been easy. Thank God I have healed enough eating SCD to deal with it. I truly

appreciate those who called me a " great mom " ....I don't feel so great sometimes.

Seeing her suffer makes me feel like a failure.

Thanks, Antoinette (cd) mom to Kiki-2 (possible IBD/uc/crohns, cd, fragile

syndrome, narcolepsy, epilepsy and confirmed autism...what a girl) SCD entire

family of five (SCD 2/06)