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Rhonda:

Did your son always have problems of insomnia? My daughter had horrendous

problems. Secretin immediately helped her sleep through the night. In

addition to a lot of other beneficial things.

Elise

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Hi Elise

He has always suffered from insomnia, but it was MANAGEABLE at the

same time. It went in about every 3 months in cycles where for about

7-10 days he would battle it.. other than that, he was a GREAT

sleaper. A week ago today, he had his first infusion of secretin.

Since then, the insomnia has been AWFUL.. I am NOT going to be doing

the secretin again.. if he gets the benedryl at night time, then he

is fine the next day.. his behaviors are mild if any at all, but last

night, we tried without the benedryl to see how he would react, and

today was HELL for him. After speaking to a few people, and to out

pediatrician, we attribute this to the secretin.. there isnt a way

to PROVE it, but up until the infusion, he didnt have this.

Rhonda

NH

> Rhonda:

>

> Did your son always have problems of insomnia? My daughter had

horrendous

> problems. Secretin immediately helped her sleep through the

night. In

> addition to a lot of other beneficial things.

>

> Elise

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Hi Elise

He has always suffered from insomnia, but it was MANAGEABLE at the

same time. It went in about every 3 months in cycles where for about

7-10 days he would battle it.. other than that, he was a GREAT

sleaper. A week ago today, he had his first infusion of secretin.

Since then, the insomnia has been AWFUL.. I am NOT going to be doing

the secretin again.. if he gets the benedryl at night time, then he

is fine the next day.. his behaviors are mild if any at all, but last

night, we tried without the benedryl to see how he would react, and

today was HELL for him. After speaking to a few people, and to out

pediatrician, we attribute this to the secretin.. there isnt a way

to PROVE it, but up until the infusion, he didnt have this.

Rhonda

NH

> Rhonda:

>

> Did your son always have problems of insomnia? My daughter had

horrendous

> problems. Secretin immediately helped her sleep through the

night. In

> addition to a lot of other beneficial things.

>

> Elise

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Share on other sites

Hi Elise

He has always suffered from insomnia, but it was MANAGEABLE at the

same time. It went in about every 3 months in cycles where for about

7-10 days he would battle it.. other than that, he was a GREAT

sleaper. A week ago today, he had his first infusion of secretin.

Since then, the insomnia has been AWFUL.. I am NOT going to be doing

the secretin again.. if he gets the benedryl at night time, then he

is fine the next day.. his behaviors are mild if any at all, but last

night, we tried without the benedryl to see how he would react, and

today was HELL for him. After speaking to a few people, and to out

pediatrician, we attribute this to the secretin.. there isnt a way

to PROVE it, but up until the infusion, he didnt have this.

Rhonda

NH

> Rhonda:

>

> Did your son always have problems of insomnia? My daughter had

horrendous

> problems. Secretin immediately helped her sleep through the

night. In

> addition to a lot of other beneficial things.

>

> Elise

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I remember the Secretin infusion days. We used Antihistamine to help Bear

sleep. Then used transdermal which didn't interfere with sleep cycles.

Barrets allergies are such that we use Zyrtec now and he sleeps all night.

We have also been able to wean him off Secretin now that we are treating

Underlying Virus and we have tried going back but he is actually functioning

higher now without the Secretin and the new treatment. However it took

months to get here.

Miriam

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I'm Curious about those of you using secretin we tried it last year and

Maranda made some good gains but we have been unable to get any in over a

year any suggestions?

Thanks Valarie in Ca. (mom to Maranda 5asd and Nick nt)

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  • 2 years later...

Hi Everyone

I will be six weeks post-op tomorrow and I must say, it has been a

hellish recovery. I can eat soft foods, but it is very uncomfortable

as my chewing pattern is weird, and i have a lot of discomfort. i

also stil have a lot of numbness - my entire lower lip and chin are

still numb, making it hard to eat in public (drooling) and Istill

ahve numbness in my nose and up to my right eye as well. None of this

has improved much since the surgery and I remember the pre-surg

waiver I had to sign saying that numbness may be permanent!

Anyone else have trouble sleeping? Since surgery I can count on one

hand the number of nights I slept well. I did not have sleep problems

before surgery and in fact, I slept like a baby the night before the

operaiton! A lot of the problems are due to soreness and swelling

(still chipmunk face at 6 weeks) and a lot to congestion. Any ideas?

Mliz

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