discouraged..long reply

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Hey all:

Thank you all for the responses and I am open to more if people have

additional suggestions.

I am reasonably sure that we are 100%. I use only gfcf soaps, shampoos,

lotions, diapers, wipes, ....I can't think of anything else. The only doubt

that I have is cross contamination. The rest of the family is not gfcf and

it is not an option at this time. I have a 16 and 10 yr old stepchildren

that are already not happy about the diet. (I make them take any gfcf

snacks into the basement t.v. room as Ebony is not allowed down there.) I

bought a new toaster for her waffles, etc. I don't think that she has

gotten anything she shouldn't and her teacher and therapists are very

supportive of the diet. She has homemade playdough and only crayola glue,

paints, crayons at school.

She is taking SNT, acidophilus, calcium, magnesium, melatonin. She also

takes zoloft and we recently added clonidine. I have samples of GABA, DMG,

folic acid, scFOS, and enzyme aid. So far, I have only added the GABA and I

don't know if I will keep this or not. She has gone back to sleep more

easily when she woke up at 3 AM, but has been much more irritable during the

day. VERY, VERY, whinny. I tried the TMG liquid and did not like that at

all.. I do plan to try the DMG very soon. If I lose the diet, I will still

work on the yeast and the various supplements. I think that I am going to

stop the Melatonin and the magnesium (I put it in a drink and it doesn't get

into her anyway. It is at the bottom of the cup. She doesn't eat any soft

foods that I can put supps in, so they have to go in drinks.)

She does currently attend an Early Childhood program 4 days a week, 3 hours

a day. She gets speech and OT there. In addition, we have a home program

for ABA and she gets between 25-30 hours a week with this.

It has just been so frustrating to get my hopes up each time I start

something and then have it not work. I really had my hopes very high when

we began the ABA program, too. I have seen improvements...she is very good

at imitation, puzzles, she is taking turns and learning play skills, her eye

contact has improved as well as her social skills. But again, no language.

I feel like this is such a big thing. I read " Let me hear your voice " and

expected my child to improve like hers did. I want her to be at age level

and be able to integrate by kindergarten. I'm just beginning to think that

it may not happen and am trying to be O.K. with it. The diet was the

same...I thought that for sure, this would be it. She would start talking

and gaining skills. I don't know.

I am still thinking about a challenge, but like I said, I hate to admit

defeat. I will probably wait and see. I originally wanted to go a year and

will keep trying to wait it out.

I would like to get the other testing done to test peptides and other food

allergies. I even went to the pediatric allergist and he refused to do the

IgG test. He did five skin prick tests and called it a day. What a joke.

Her pediatrician, while slightly supportive of the diet...she does think it

possibly works for some kids, does not want to do any invasive testing. I

don't know what to do..there are not DAN doctors close within our insurance

and I don't have the resources to pay out of pocket and drive 100's of miles

to consult with someone.

Tamara, mom to Ebony-3 1/2, ASD & -1 month

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[Guest guest]

> I would like to get the other testing done to test peptides and

other food

> allergies. I even went to the pediatric allergist and he refused

to do the

> IgG test. He did five skin prick tests and called it a day. What

a joke.

> Her pediatrician, while slightly supportive of the diet...she does

think it

> possibly works for some kids, does not want to do any invasive

testing. I

> don't know what to do..there are not DAN doctors close within our

insurance

> and I don't have the resources to pay out of pocket and drive 100's

of miles

> to consult with someone.

Tamara,

You sound so down in your note, so first, here's a hug! I can't

imagine how exhausted you must be with Ebony, 2 teenage stepchildren,

and the new baby. You're Wonderwoman in my book just for getting out

of bed in the morning!

It really sounds like you're on the right track with all of Ebony's

therapies and treatments! After 8 months of ABA, Brett is a new and

wonderful little boy. (We're now up to 38 hours/week.) We have seen

leaps in verbal skills and social skills since starting the diet just

over 3 months ago, so I guess we're among the lucky ones. I have a

few suggestions for you:

* Keep up with the diet as long as possible. Some kids may take

longer to show results. You said you'd give it a year, so hang in

there!

* Brett's stools are STILL a mess, so we've been taking him to a GI

doc. He did the battery of IgE testing for us (rather than an

allergist). He also found some " blastocystis hominus " in Brett's

stools that is very persistant. We're going to try some new stronger

drug for it starting today (I haven't picked it up from the

compounding pharmacist yet, so I don't know what it's called). Maybe

Ebony also has a bad bug in her system that's preventing the diet

from taking full effect.

* I can't remember whether you said you were doing any probiotics

and/or colostrum. If not, those may be worth a try. (We're using

acidophilis plus, and are planning to " upgrade " to ProBio Gold when

our current supply runs out, in addition to adding some colostrum.)

* Probably the best advice is to give yourself a break! Have your

husband and/or the teens watch the little guys so you can go out to

lunch with friend, wander the mall, get a pedicure, or sit somewhere

quiet and read a non-autism-related book. Renewing myself a little

always renews my outlook, and somehow Brett seems to do better too!

Hugs to you and your little ones-

Sue