I'm new here with PDD NOS daughter

[Aliza]

My name is Aliza, I have a three year old daughter with PDD NOS. I'd love to hear from anyone who's tried Secretin and/or GFCF diet for their child (or how about oral chellation?).

Tia does not have leaky gut, has no sleeping difficulties. Neither did she start regressing at any given time. She seems to have been delayed from very early on in infancy. No aggressive behavior, no tantrums, no speech.

We're starting to teach her sign language, which she seems to want to learn. She gives good eye contact, is moderately affectionate, parallel plays with her peers.

Any comments/advice?

Thanks.

[Charmaine Leone]

Hi Aliza,

I have a 4yo girl, Nerida, with PDD-NOS.
I haven't tried any of the diets you mentioned with Nerida - if I took away carbo's and dairy, she wouldn't be eating anything!!

Good idea to teach your daughter some signing - we started this with Nerida about 18 months ago, and it really helped her to begin talking. (She had speech, then lost it at around 18 months of age), and still had a few words when we first took her to speech therapy.
Currently, Nerida is linking short phrases of about 3-4 words, so she's come a long way in a short time!

Unlike your daughter, mine does have tantrums!! They have decreased in number though, she used to have them almost daily last year, now it would be one or two a month - much better! I think this area has improved because her communication skills have improved - I always felt her tantrums were due to her being frustrated about not making herself understood/not understanding what was happening or expected of her.

Well, good luck, and bye for now,

:)

[Dad]

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

Here is a really good link with a lot of quality information. Under the general information section are a number of good links about the gfcf diet, including a very, very busy message board with literally thousands of parents posting about their experiences with this intervention.

Good luck to you!

[Aliza]

Thank you for writing! Actually, the gf/cf diet is not at all as difficult as some people would have you believe. It certainly limits available items, but by no means does it eliminate carbs. There's always potatoes, corn and rice! My daughter does not seem to miss either dairy or grain products. Of course, is she spoke, she might say otherwise.

It's interesting that many children seem to start regressing or being delayed at around 18 months. Even those who haven't been immunized. Tia was delayed from much earlier, though.

I've read some of your prior posts, and your daughter sounds adorable. My girl is beautiful, too, and everyone wants to touch her and converse with her. It gets awkward sometimes when people keep insisting on a response from her.

What therapies have you tried for your daughter? Have you considered Secretin?

-Aliza

[Aliza]

"Dad",

Thanks for the link. I will go browse!

[Charmaine Leone]

No, haven't considered any treatments for Nerida - I don't think the Secretin therapy is available in Australia. I've heard of one couple who wanted to try it for their daughter and they had to go to the United States, and it cost them a heap of money for only a tiny, if any improvement.
I don't really know much about it, so it might work - I don't know!

As for the diet, Nerida's digestion is fine (thank goodness!), and doesn't have the diarrhoea/leaky gut problems, etc. so her paediatrician, didn't think it was necessary for her to be on it.

Nerida has Early Intervention twice weekly, speech therapy, adn goes to mainstream kinder 3 days a week, with an aide.
She's doing really well!
Much improved from 18 months ago.
How about your daughter? Have you tried anything with her that has been successful?

Regards,
:)