High dose riboflavin/PPDNOS

[Guest guest]

My daughter has battled autistic like behavior for a while.

Last yr. we noticed it getting bad. I was very worried. We saw Cohen

for our routine appt. I mentioned putting her on riboflavin (to help

with an unrelated issues GA). She responded immediately to it. Her

fits declined and her behavior was entirely different. At the time I

didn't put it together that it was the riboflavin I just noticed the

change. Anyways, after about 7-8 mo. some behavior returned and when

we saw Cohen in the fall, he increased her to 400mg bid. The

behavior normalized again.

When she was in the hospital for her surgery this winter, after

speaking with many mito doc, her primary decreased her ribofalvin on

the assumption that she was not utilizing this high of a dose and

was probably excreting most of it.

Anyways, we went down to 100mg bid and noticed a major behavior

change within a week. Huge fits, and increased frequency. She would

just sit and cry for no reason, like she was depressed. I increased

her back up to 200mg bid and she did better within 1 wk. She started

again to have fits, though not as bad and I increased her back to

300mg in the am and 200mg a night. What a differnece.

I have read an article online (cannot remember where though) that

50% of autistic kids esponse well to high dose riboflavin.

Has anyone else seen this? I think it is great and just wanted to

pass it along.

Dawn

[Guest guest]

Some thing else to consider; we use DMG for Leah that is suppose to also

help with autistic behavior if I remember reading that some where or

Leah's nurse from her metabolic office did a search on DMG. Anyway,

since we started Leah on that; she isn't crying as soon as people come

in to a room and other autistic behaviors. Don't know if that is

related; but we find it has helped her in many ways. Even boosting her

immune system. Knock on wood, Leah wasn't hospitalized at all this

winter and hardly had any colds. We are now dealing with ear infections

because her tubes are out and she has some hearing loss because of fluid

build up; but since starting DMG we noticed neat things happening to

her. We all learn from each other don't we?

Nerenhauen

mom to Leah

thefiveofus02 wrote:

>My daughter has battled autistic like behavior for a while.

>Last yr. we noticed it getting bad. I was very worried. We saw Cohen

>for our routine appt. I mentioned putting her on riboflavin (to help

>with an unrelated issues GA). She responded immediately to it. Her

>fits declined and her behavior was entirely different. At the time I

>didn't put it together that it was the riboflavin I just noticed the

>change. Anyways, after about 7-8 mo. some behavior returned and when

>we saw Cohen in the fall, he increased her to 400mg bid. The

>behavior normalized again.

>

>When she was in the hospital for her surgery this winter, after

>speaking with many mito doc, her primary decreased her ribofalvin on

>the assumption that she was not utilizing this high of a dose and

>was probably excreting most of it.

>

>Anyways, we went down to 100mg bid and noticed a major behavior

>change within a week. Huge fits, and increased frequency. She would

>just sit and cry for no reason, like she was depressed. I increased

>her back up to 200mg bid and she did better within 1 wk. She started

>again to have fits, though not as bad and I increased her back to

>300mg in the am and 200mg a night. What a differnece.

>

>I have read an article online (cannot remember where though) that

>50% of autistic kids esponse well to high dose riboflavin.

>

>Has anyone else seen this? I think it is great and just wanted to

>pass it along.

>

> Dawn

>

>

>

>Please contact mito-owner with any problems or questions.

>