Re: Always worsening before bettering?

[Guest guest]

> has been gfcf since april; we are doing very good now and I am

> trying to reduce the phenolic foods to the very minimum, w/o cutting

> him off of them completely. He has also been on supplements since

> april (started different ones at different times): SNT, DMG, zinc,

> folic acid, magnesium; I recently started melatonin (about two

weeks)

> and just last week the enzymes.

My son tolerates NO highly phenolic foods, altho some [but not very

many] he can have in SMALL amounts with HNI enzymes. SNT also

aggravates phenol issues in sensitive children, so you can consider

another of the vitamin supplements from Kirkman, or give the SNT in

the morning and not at all after lunch. My son does not tolerate TMG

at all, and DMG is similar, so you can consider that also. The

enzymes also do cause hyper in some children [more on that later down

here]. Also you can consider giving the zinc and/or magnesium in the

evening, that helps some kids sleep.

> DMG showed the best results above all, besides the diet; it seemed

> all ok until he was taking the liquid forms of the supplements, then

> did fine for a while with the capsules, and now I am not sure if the

> capsules are a problem, if we hit a " plateau " , if it is that I

> started new things and he reacts to them, or if he is just having a

> bad time lately, because we had a guest with us for a week.

>

> He looks like he is regressing behaviorally, tho I am not even sure

> when all this started. He started stimming again, right after I

tried

> the CLO; then I suspended it and re-tried it and noticed he was not

> doing good with it, so I took him off of it. Now it seems like he

> never got off of that phase of when he was taking CLO: always hyper,

> always stimming, always less compliant, eating less, not happy with

> anything, and always focused on those darn flashcards!

My son was similar to this, altho not exactly the same. I have been

trying to find a vitamin A supplement that my son tolerates, and I

finally did. It is Nature's Life Beta Carotene from my health food

store. It removed my son's final eye stims, plus also helped with his

language, which was strange to me but nice!

>

> I am not sure if I am doing anything wrong with his diet or if some

> supplementing are not doing good anymore. he has done so good for so

> long! the only ones I could have doubt about right now are the

> melatonin (that works sometimes and sometimes doesn't, why I don't

> know?) and the HNI enzymes. I cannot get him to sleep through the

> night, and I am getting very tired.

Melatonin works for some AS kids, but for some it makes their sleep

patterns worse, and for some it works sometimes and sometimes not.

If you son is phenol sensitive and eats too many high phenols in one

day, especially after lunch, the melatonin will not help much. I

would recommend you not feed highly phenolic foods after lunchtime.

Here is my info on that.

http://home.pacbell.net/cscomp/phenol.htm

HNI enzymes do cause hyperactivity in some children, which many of

them it is the L-glutamine. The new formulation does not have

L-glutamine, so you can ask for a sample or purchase some of the new

formulation and see if that helps.

You can also teach your son to stay in bed/room or come out to the

couch, like I did, so he can be awake in the night but not wake anyone

else. Here is how I did it for my son, you can use any ideas here

that might help you.

http://home.pacbell.net/cscomp/sleep.htm

>

> To top it all, my twins are putting out new teeths, so they have

been

> grumpy for almost a month and they sleep with us almost every night

> both. So I can't really take this, much longer.

I do not allow my children to sleep with me, because I need my sleep,

so you can consider that also, if it would work for your family.

>

> What I want to know is if any of you are in this same situation

right

> now and how are you dealing with it, and what was that caused the

> problems if you have figured that out yet? Is it the capsules? is it

> the disruption of routine (tho he was already like that before my

> friend came)?am I doing the diet wrong w/o noticing?

Could be any of these things. Do you give the capsules as capsules,

or open them and mix with something? Some kids do not tolerate the

material which is in the capsules, for example my son cannot have

gelatin capsules because he does not tolerate beef and gelatin is a

beef product. Also, if you give the enzymes in the capsules, it takes

about 30 minutes for the capsules to dissolve, so perhaps your son is

partially digesting some of his food before the enzymes get out of the

capsule and into his stomach. I open the capsules and mix the enzymes

into honey, then spread the honey onto a cracker. Works great for my

son.

>

> I am at the end of my rope again, and I thought it could only get

> better when I started the diet; now I am not so sure anymore....

It goes up and down.

Dana