Re: Can anyone answer my question?/Jeanine

[Guest guest]

My boys have thankfully come a long way. That have taught us so much.

Logan was just taken to get re-evaluated and they said it looked more like ADHD

that

ASD. : ) He still is very active and distractable and can go from 0 to 60 in

the excitement

category. He is still on many supplements, but we learned an important lesson

about

getting too comfortable with recovery. He is very fragile metabolically and we

made some

decisions that led to a recent regression. He has PANDAS and it was in

remission. Logan

was doing so well that we stopped the anti-strep herbs and the microbial RNA

that had

helped him so much. Well he came down with a horrible case of strep (no sore

throat, but

a scarlett fever rash) that completely changed his behavior, eye contact,

sensory system

etc. He even developed a very scary facial tick and made sounds under his

breath like a

train. I was so upset. He was the one I was done with! Well- regardless of

what people

tell would lead you to believe if your child is meatbolically fragile- you are

never " done. "

Never let your guard down- trust me! This all happened in mid October and now

he is

almost back to normal. He is just more hyper than usual. The facial tick is

gone, sounds

are under control, fine motor skills are almost back to normal and he is more

sensory

regulated. Most people would never know what he has been through recently or

before.

You used to ask him his name and he couldn't respond. He couldn't answer why,

how or

even what questions. Now he talks like any other 6 year old. Now he has lots of

friends at

school and plays on a t-ball team. He is happy which is all that I care about.

He is

learning to play golf with his daddy and is a very good reader. I often find

him reading

chapter books in his room. (Not bad for six.)

's improvement is the most dramatic, but he still has autism. He is 4.

He is so with

it now and follows directions spoken to him in a conversation out of the context

of a

routine. IE- He wanted to take a bath and my husband said. " We need to clean

out the

tub first. Let's get a cup " He ran to the kitchen by himself and dumped out a

plastic cup's

ice water and ran to give it to his daddy. He now is beginning to answer

questions more

readily and tells us what he wants. has apraxia and along with this he

has

articulation problems. C is pronounced T etc. He plays with other kids, but

has a hard

time if the play turns more language based. His eye contact is great. He gives

these

mischevious looks and raises his eye brows like " look what I'm gonna do. " He

has quite

the personality. VSL3 (probiotic)LDN, IVIG, and Deplin (Rx strength folic acid)

have been

very helpful recently. IV secretin also helped him to start gaining weight. I

just recently

posted about his rash that we call " his valtrex rash " that came out with IVIG.

He never held

a titer to the varicella vaccine. (MMR and varicella vaccines helped him to

crash into

autism quite dramatically.) used to bang his head, not acknowledge

others in the

room, cry when he wanted something with out gesturing, pointing etc. Stomach

aches, up

all night crying, no naps, no sleep. UGH! Now he sleeps all night,

communicates

effectively, runs up to me and says " Mommy. " He smiles and tries get my

attention by

doing things he is not supposed to do while grinning. He knows his letters and

sounds

and is reading sight words. He still has a far way to go in the language

department, but

we are feeling like he is " here with us now " where as before he was a million

miles into his

own world.

Here is to hope! Recovery and improvement is possible! It just takes A LOT of

reasearch ,

A LOT of hard work, A LOT of good therapies, A LOT of advocacy, an awesome DAN!

doc,

and unfortunately A LOT of $ invested. We drained our savings, our equity, our

retirement

and our credit cards- but I must say the " I love you mommy " got from

last night

made it worth every penny. I may have to teach kindergarten until I die- LOL!

But at least

I'll understand the kiddos on the spectrum in my class and my boys will have a

future that

no one thought that they would have.

: ) Jeanine

> >

> > I posted earlier and can't find it to repost. My son is much worse

> > with his OCD, lining up, etc. and has had fever blisters on and off

> > since we started valtrex almost a month ago. Is this normal? Should

> > I continue even though he seems to be regressing?

> >

> > Thanks,

> > Crystal

> >

>

>

>

>

>

>

> ---------------------------------

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[Guest guest]

> Thank you for posting this reply. It is always beneficial to gleam

encouragement and pearls of wisdom from those who have gone before you

on a recovery journey. I've found that older posts in the archives

have proven to provide strength, inspriration and patience.

>

Yes, thank you all for replying. There were a few questions from

earlier I wanted to answer. My son does eat yeasty foods, but is

GFCFSF with about 40 other food allergies. We're taking Yeast Aid by

Kirkman. Should we do something more potent? I've never been able to

tell yeast meds help him, but he's never been on a yeast free diet as

far as fruit and flour. He is very thin and will not eat. We've been

doing DAN for over a year and I can't really tell too much of a

difference. How long are you supposed to stay on Valtrex? Are there

other things to do to go along with it? I did search the files and

didn't find any.

Thanks,

Crystal

[Guest guest]

You are too kind. My boys are both on GF/CF corn free and soy free diets.

Logan also

becomes anaphylactic to beef, eggs and peanuts. So, feeding time used to be

tricky, but

is no big deal any more. My husband and I eat GF/CF/ CF as well. It helps for

the kids to

see us eating the same foods and I feel sooo much better- no more tummy aches

for mom

either : )! Good luck to you on your son's journey.

> > >

> > > I posted earlier and can't find it to repost. My son is much worse

> > > with his OCD, lining up, etc. and has had fever blisters on and off

> > > since we started valtrex almost a month ago. Is this normal? Should

> > > I continue even though he seems to be regressing?

> > >

> > > Thanks,

> > > Crystal

> > >

> >

> >

> >

> >

> >

> >

> > ---------------------------------

> > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it

now.

> >

>

>

>

>

>

>

> ---------------------------------

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>

[Guest guest]

Hi Crystal-

My son was (is) a tough cookie too. It is so interesting how much the gut

plays a role

in all of this. We used glucosamine to decrease the inflammation in his gut and

the very

strong pro-biotic VSL 3 (available at Apothecary shops w/o an RX) Diflucan has

helped as

well. Your son's refusal of foods might be a sign that he is still having pain

when eating.

Maybe the VSL 3 would help. It is used for ulcerative colitis and Chrons

disease. We found

that removing corn was very helpful for . It can cause many allergies and

pain. Have

you tried digestive enzymes? Maybe your son is not fully digesting the foods he

is eating

and this is causing pain. We follow the resarch of Amy Yasko and found that the

Bowel

Support RNA immediately cleared up any stomach problem that was having.

Also,

when we adequately supported 's methyl donors he began to have normal

colored

poop. He takes Deplin, which is an RX for folic acid. So, many factors are at

play with the

gut. I hope this helps. Good luck and feel free to private e-mail me. I will

be more than

happy to share or help if I can. : ) Jeanine

>

>

> > Thank you for posting this reply. It is always beneficial to gleam

> encouragement and pearls of wisdom from those who have gone before you

> on a recovery journey. I've found that older posts in the archives

> have proven to provide strength, inspriration and patience.

> >

>

>

> Yes, thank you all for replying. There were a few questions from

> earlier I wanted to answer. My son does eat yeasty foods, but is

> GFCFSF with about 40 other food allergies. We're taking Yeast Aid by

> Kirkman. Should we do something more potent? I've never been able to

> tell yeast meds help him, but he's never been on a yeast free diet as

> far as fruit and flour. He is very thin and will not eat. We've been

> doing DAN for over a year and I can't really tell too much of a

> difference. How long are you supposed to stay on Valtrex? Are there

> other things to do to go along with it? I did search the files and

> didn't find any.

>

> Thanks,

> Crystal

>